I'm on the same treatment for the same condition. The reason I was put on forteo was because my Ostioblast process had shut down because I'm not producting any PTH. So far my test results are showing an increase in ostioblast activity. I do not know if that will transalate to actual bone growth. Good luck.
My doctor suggests that I take Forteo. However, the Forteo site says that if you have had radiation to your bones not to take it. I have had radiation for breast cancer but the bones are nearby and certainly had some radiation in the p...
What is the answer to this. I had radiation for breat cancer and have started with Forteo. Should I stop Forteo. I am conflicted about this decision.
Dr. Gonter, I took Forteo for 7 months. For the first time I became very nauseous,legs very painful ,weak and very tired. My doctor ran a lot of blood tests and found I had anemia and kidney failure. I was told to stop the Forteo right away as some other tests came back very high. Two and a half months before Forteo my hemoglobin was 13.4 , 7 months after ,my count was 9.2 Have you heard from any one else with these problems?
My doctor gave me the first supply of Forteo. She received it from Eli Lilly Co. They generally give them to doctors for distribution. Also, contact, Eli Lilly Co. they have different areas of assistance depending upon your age, income etc.
You need to fill out forms etc., but, it's worth it. Good luck
I am a 42 yr. old female who has Cushing's and has had periods of steroid use from pituitary tumors (2) removed. About a year ago, I fell and injured my lower back which has left me with osteoperosis due to the Cushing's and the steroid use and I am now dealing with severe neuropathy in my feet and lower back pain. My bones are not strong enough to hold the screws which are needed to fix the breaks in my vertebrea so I need to take the Forteo injections to see if we can make them strong enough to have the surgery. My insurance denied our request for the drug, and I do not qualify for disability medicare insurance until June, 2010 so I am looking to see if I can get a few months of samples to start the process until my insurance will cover the cost. I am on pain medication constantly and am very anxious to start the drup asap. Can you please help me with obtaining some samples of this drug? Please advise-thank you. M
I am 52 year old woman that broke my femur in a brutal fall. (not normal fall in your house. I have just been told to by my doc and am general very good health, ha, I have spinal and hip osteo. just like my 82 year old mom. How did you deal with your insurance company? I just found out my results today. I could use some advice before I go to bat. Thanks!
Why is Forteo not available in Canada? I explored the idea of getting it
there as my insurance coverage (am on Medicare) won't cover until January;
I did not apply for insurance last fall during the 3 month period to register for
drug coverage because I was not then taking a prescription drug. I just
got my first sample (for 28 days) from my doctor. My nurse practitioner
seemed unaware of the high cost of the drug when I told him. Is there any
company selling it cheaper than Eli Lilly?
Jeanne,
I know it has been awhile since you made this post, so you may already know this but I live in Ontario, Canada and I just got approved by Green Shield for Forteo. My doctor worked with the drug company, who inturn worked with my insurance provider and they got me completely covered. I would like to know though, if you don't mind sharing, how benefical was this drug for you. I am a 36 year old male who has been diagnosed with Osteoporosis due to taking Dilatin for 15 years because I am epileptic. The doctor feels this is the best way to prevent any more loss to the bone density in my hips and back. Needless to say the drug company was surprised to see my age when they were first contacted.
Thanks for writing. Unfortunately, my mom died the following month on Jan 11, 2008. We didn't suspect that the Forteo was causing her symptoms until it was too late. I am still very interested in knowing if anyone else experienced similar symptoms while on Forteo. My mom was very healthy, other than her osteoporosis. The doctors were unable to attribute her sudden decline to anything! I feel so helpless, still tormented by what happened. I would appreciate any feedback. Thanks. Cindy Stewart inayellowwood@yahoo.com
Hello Cindy,
That is very tragic, I'm sorry that your mom passed.
I just found out about Forteo a couple of days ago, from an Orthopedic surgeon. He was suggesting to me that this drug may help me. I don't suffer from osteoperosis, that I know of. I was just researching it prior to trying it out.
God speed to you in your quest.
My mom and mom-in-law started taking Forteo at about the same time..Within a year they had both lost a lot of weight and are nothing but skin and bones...They both are having serious diarrhea ,gas and poor appetite..but they keep taking the drug..My mom had a DEXA scan after a year which showed very slight changes some are worsened..but she keeps taking it at full cost..I feel this drug has been detrimental to both. Mom and mom-in-law both complain of being tired and no energy...Since these changes were very dramatic over a years time I would like to attribute it to Forteo..Mom is 70 y.o. and mom in law 79 y.o with similar body builds and height and are both now skin and bones..Mom does say a lot now I"I keep forgetting things" ( no alzheimers or dementia in the family)
I am very confused. I don't know what to do. In the past two months, I have had all kinds of tests and blood work. Everything was good. Then I was referred to a specialist for my osteo because my gyno. did not like what he saw on my recent bone scan. I am frustrated because I am healty and active and now the specialist wants me to use Forteo. I have researched this drug and my gut says don't do it and take my chances. I am presently on Boniva once a month. Maybe my frustration lies in the fact that in the past few months, I have becone leary of drs., treatments, etc. Somehow, I guess I feel that I just don't want to take a chance of feeling worse for two years taking the Forteo. Thanks for listening.
Hi Char, welcome...Can you get a second opinion on this to be sure that you are indeed a candidate for Forteo? There are pre-requisites that one must meet to get an insurance company to pay for this. If you need more info on this let me know.
One thing, the half-life of Forteo is really short at about one hour. However, I suppose it's possible to have side effects longer than that. I took Forteo without any side effects, but we all react differently to it, so be sure it's something you think you want to do and if not look for something else.
Here's a question of the week on Forteo experiences if you'd like to read it and talk to others taking it, or those who decided not to, with many links on the drug and how it works, who should take it, and who shouldn't take it.
Good luck with your decision...
Pam:
Thank you so much for your insight. I had pretty much decided not to take the shots. The dr. that wanted me to take the drug had run blood work and said she would call and let me know the results and the plan to take the Forteo. I finally called yesterday and you are not going to believe what the report on the blood work was! You see, in the last few months, I have had extensive testing, blood work (I don't think I have any left for them to take), etc. The dr. that scared the whits out of me about the Forteo, found nothing wrong. She said that my calcium was too high. I have never heard of such a thing. My gyno. had told me to take at least 1200mg/day. This dr. said take my 600/with Vit. D in the morning and take my multi vitamin in the afternoon or evening. I asked three times about the Forteo or any other medication and was told I was fine and she wanted to run more blood work in three weeks. I said, "I thought my scan was so bad that I needed the Forteo"! She kind of laughed and said "you are fine". What the heck? I am on Boniva already and will continue to take that. I am not knocking drs., but it makes you wonder about what they tell you and scare you half to death. My confusion was when the dr. had asked about drinking a lot of milk, eating yogurt, cottage cheese, exercising, etc. I do all of it. Now my calcium is too high? What a hoot! I guess I will just keep on doing what I do.
Just writing all of this makes me feel better.
Char
This is Char. One more thing on the insurance. I checked it out. The drug is approximately $900/mo. Even with insurance, it would have cost me over $400. The dr. had said that she could make special arrangements and get the Forteo for me at about $30/mo. ??? Far cry from $900/mo. I am feeling very fortunate at this point that all I am taking is Boniva.
I wanted to say also that I have a lot of sympathy for those on this website that have had the bad experiences. My mother is 85 yrs. old and never had any problems in her life. She only found out she has osteo in the past five years. Of course, she is not on the Forteo, but another medication.
Good luck to all. My only comment to anyone else is to be sure to get a second opinion before jumping into any medication. I, myself, do not do any kind of medications well. If there is a side effect, I will surely have it.
Hi Char, boy you got me, I don't know why your doctor did the big turn around
There is one thing you mentioned, and that's the elevated calcium. If you do have hypercalcemia (high blood level of Ca2+), then you might not be a candidate for Forteo. If you read the Clevelenad Clinic pdf on this or any other on Forteo, high calcium usually has to be corrected before you can start on Forteo (pages 1 and 4). Forteo can cause high calcium levels, so they have to check your levels before you start to see if they are high. If it is high, I would try to find out why since having hypercalcemia can be a sign of some other problem and could explain your bone loss. Since we need calcium for our bones and other things, you might think that having a higher score than normal is good, but that's not the case. Just be sure that the lab results were not an error, and watch the calcium levels. Ask you doctor about this and about hypercalcemia--don't ignore it.
Good luck with all of this, and here's an article on calcium if you'd like to read it.
Hi Char, yes the price on Forteo is out of sight!! Some insurances cover it with a resonable copay and some don't. I would love to know how your Dr. could get it at $30.00. We constantly get questions about this and if there is any way to obtain it cheaper. Eli Lily does have a assistance program, but your income must be low, and you can't have any other insurance even if it doesn't cover it. Since there is so many insurances that have a high copay or don't cover it at all, it can be out of reach for many.
Anyway, since you won't be taking it you won't have to worry about this. Good luck with the Boniva.
Take Care...
oh and watch your calcium levels-ok? I would also ask the Dr. when he/she plans on checking it again so you'll know if it's a problem and if it is really elevated over the reference range.
The following are approximate numbers on normal calcium range (vary from lab to lab):
Total calcium: 8.5 to 10.6 mg/dL
Ionized calcium: 4.4 to 5.3 mg/dL
You might also ask for some other blood tests, if the calcium is really above range, like intack PTH or PTH, vitamin D, urine calcium, phosphorus and magnesium. Double check these with the Dr. since you may have already had some of them done in a Basic Metabolic Panel or Comprehensive Metabolic Panel.
My mother is 80, she has been on Fortero for 9 months and has had a drastic personality change since being on this drug. She is always tired, can't even seem to sit up long, 15 minutes at the time, she lays in the bed, puts off doing anything, says I'll do it later but she is unable to remeber or to do anything. She says she doesn't know what is wrong she just feels zapped of all her energy, she is pitiful.The dr.'s prescribing this med dismiss any relationship to the med, just age, she was mentally fine, now she really cannot remeber yesterday, she cannot remember how to cook, she was a wonderful cook, she cannot function at all now. I asked her Dr. to take her off for 1 month and she was very put off. I was confused by the Dr.'s reaction to my request, doesn't she too want to know if it is the drug? I am taking my mother to a memory special;ist today, I will attempt to discuss my concerns with her.
Hey Karen, I have just been reading all of these sad stories and it makes me want to cry. Our mom has changed drastically in the past year since she started taking Forteo injections. She too was a wonderful cook and has completely forgotten how to cook, and says she is in constant back pain, she is totally hunched over, wasted away to skin and bones, and has severe leg cramps almost every night. Her memory seems to be fading fast and I fear she will soon forget her family if she doesn't stop this medication soon!!
Concerned daughter, good for you for being there for your Mom. Couldn't you express your valid concerns with your mom's Dr. to see what can be done here? If the Forteo is causing this, then the risks may outweigh the benefits, unless it's kept her fracture free. In any case, this sounds terrible and I would try to go and see the Dr. and have a conversation with your mom included so the Dr. can see what's going on.
Good luck with this and I hope you find a solution.
I justed read your comment online regarding your mom and the Drug Forteo. I'm currently reseaching the side effects as well. My mother was 64 years old and very active when she was precribed forteo. She was on forteo for two years. During the time she was on Forteo, she complained to her doctor about chronic back pain, increase hip pain, chest pain, depression, shoulder pain, lower adominal pain over and over again while taking these injections. She was told to keep taking the foteo along with pain meds for spasm. Why wasn't she taken off forteo? GREED! My mom and other elderly ones are been used as a Guinea Pig for this drug. My mom's back pain got so bad that we took her to an orthopedic specialist because we all wanted answers as to why she could not walk and why she was having so much joint pain. Sadly, we found out that cancer was eating away her bones, stage IV cancer and had spread to her liver. After reveiwing her medical records, we feel that this could have been prevented only if her GREEDY doctor would have truly cared about her and listen to her complaints! My mom would still be walking and dancing if it was'nt for GREED of FORTEO! ELDERLY BEWARE OF FORTEO! MORE PAIN THAN GAIN!
I am so with you! And thank you for writing to me. It has been over two years since my mom died and I still feel there is something that I need to do to rectify the damage that Forteo/that her doctor did to her. You are so right. It was GREED. I am so angry with myself for not seeing this and persuading her to stop the injections. I honestly did not make the connection until after she died. Please keep in touch. inayellowwood@yahoo.com
Cindy Stewart
I am so with you! And thank you for writing to me. It has been over two years since my mom died and I still feel there is something that I need to do to rectify the damage that Forteo/that her doctor did to her. You are so right. It was GREED. I am so angry with myself for not seeing this and persuading her to stop the injections. I honestly did not make the connection until after she died. Please keep in touch. inayellowwood@yahoo.com
Cindy Stewart
I am a 52 women who was told at age 46 I had osteoporosis. Went on actonel for years. My bone density tests got worse. Took myself off of it and now my doctor wants me to take forteo. I am very confused about this drug and not in any rush to start treatment. I exercise 4-5 times a week and take calcium and vitamin D. Nothing seems to help me. I eat calcium enriched foods also. Help.
I am a 52 women who was told at age 46 I had osteoporosis. Went on actonel for years. My bone density tests got worse. Took myself off of it and now my doctor wants me to take forteo. I am very confused about this drug and not in any rush to start treatment. I exercise 4-5 times a week and take calcium and vitamin D. Nothing seems to help me. I eat calcium enriched foods also. Help.
char i am in agreement with you, as i am curious on how many perks a dr gets to have their patients take it, !! and i also dont trust Drs from experience with my father dieing of cancer! all i know sitting in my dr office there were a total of 9 medical salespeople come thru his off office some with snacks and 1 brought in lunch and 1 brought in star bucks fozen coffee, all to get the drs to get his patients to take their companys drugs !!!! errrr
Cindy
I am sorry for your loss. You and I are in the same boat. I lost my mother 12/2009 to Osteosarcoma. She was on Forteo for approx 13 months. Diagnosed with Osteosarcoma (cancer) February 2009 at stage 4 in her lung, spine, hip, and stomach.Too late to do anything except try chemo and radiation that might give her a year. My mom was a healthy 73 year old that had been diagnosed with osteoporosis (she would get nausea from fosamax,boniva & calcium supplements) gerd, basically nothing major in health issues. Long story short 14 injections of forteo, 8 months of chemo, 3 months of radiation, my mother is no longer here to enjoy her children, grandchildren, great grandchildren, family, cooking, gardening, traveling and LIFE. Forteo stole our mother from us. A few weeks before she passed she asked me if there is a way to tell other people about what happend to her because she would not want to see anyone else go through what she is going through.
Tracie, welcome! I'm so sorry to hear about your mother! She was so young and then had this problem, how terrible. How are you and your family doing?
I'm confused as to how long she took Forteo...was she on it for 2 years or 2 weeks? You mentioned 14 injections, so I can't figure this out. Anyway, this is so horrible. I'm sure our members will be touched by your story and wish you their condolences!
Have you reported this to Eli Lily? If not, I hope you do.
Take Care and all the best to you and your family for your loss!
The night sweats are horrifying and I really don't know what to do about it. I took Forteo for nine months and the whole time I was trying to figure out what was causing them. They kept getting worse and worse and I'd wake up wrung out and in pain all over, hardly having slept because of sweating so much. Also fatigue and my heart is beating faster than normal, although that symptom hasn't gone away since taking a holiday from the Forteo. the sweats went away after about a week. I get intense cramps in my lower back. My doc says the Forteo can't be causing these symptoms too. They read the initial label and, if it isn't on there, they think it doesn't exist. There are always other side effects that appear once a drug hits the general population. I plan to call the Forteo people, because I've heard that some studies have shown that even taking it just once a week helps. that may be what I do.
The only way to have these experiances incorporated into information provided with the drug in the future, is to report the side effects to the FDA. I have been told by a drug rep, who is a trusted friend, that the MD's almost never report anything to the FDA.
If people are getting sick please report it to the FDA MedWatch program. The number to call is 1-800-FDA-1088 or the have a website http://www.fda.gov/medwatch/report/consumer/consumer.htm
Blogs are great, but please make sure your experiance make a difference for future users as well.
Hi Connie
I have been on Forteo since June9, 2009. I immediately experienced within minutes pain in my bones. Every bone in my body hurt and still hurts within minutes of taking my shot. The pain is not as severe as it was at first but I still dread taking the shot every evening. I take it at bedtime and believe that helps me get through the pain that goes with it. I don't mind the shot but I dread the pain that goes with it. My teeth have become very sensative and my jaws hurt. I will be seeing my dentist this week comming up. I think all of these symptons are related to forteo. I have red skin irritation where I inject myself for the shot. I am not sure I will be able to continue taking it. The doctors say it is better than anything else for severe osteoprosis.
Good luck -- Linda
I have been on Forteo for 2 months and have sideffects from the drug. I am very fatigued, nauseated most of the day, bone pain that changes from my lower spine to knees to fingers and pretty much throughout my body. I also have a constant mild headache. My physician has me taking my injections before bed and also taking Tylenol PM. This has relieved the nighttime discomfort but I am still experiencing the discomfort during the day. Needless to say, Forteo has really diminished my activity and my quality of life. I have stopped taking the medicine and will get a second opinion. Of course as with the rest of us, my doctor says 95% of people have no side effects while 5% do. I am 51 with a -4 T score. I really don't know what to do. Eli Lilly is not helpful.
I am a 55 yr old female and had used Forteo for 4 months. In the 4th month I started experiencing some confusion and memory loss. At first I thought I was just being absent-minded but then actually couldn't remember if I had gone to a dentist appointment or not. My doctor suggested quitting to see if that would make a difference and it did. I called the company and reported the memory loss and my doctor also had the drug rep call me to ask the serial number on the pen I was using at the time. I was told that in order to recognize something as a side effect 2 percent of the people using the drug have to report the same problem, so if anyone experiences a side effect that is not listed call the company and report it. My memory is better now and the confusion is gone but the feeling was horrible and made me think I was losing my mind. I haven't started on anything since and haven't had another scan yet to see if the Forteo made a difference although it probably wasn't long enough.
I'm 53 and haven't started Forteo yet because I didn't realize I needed a separate Rx for the needles, but I'm extremely afraid to use it, first because of the osteosarcoma, and secondly because I have kidney stones. I agree when you say the manufacturer isn't very helpful. I've called numerous times with different concerns, and although the representatives are very nice, they can only read from the general info they have, it's usually "discuss with your dr". My t-score is -2.7 in my back and osteopenia in my hips. My ortho dr scared me when he said I'd be crippled in 10-20 yrs, and recommended the Forteo. I hope you start to feel better soon!
Pat, your doctor is using extreme scare tactics on you! Your scores are NOT that bad, and personally I dont' think they warrant forteo and maybe not even bisphosphonate drugs. You may be able to do a lot naturally. My scores are -3.3 and my new doctor said don't rush into drug treatment, wait for another bone scan to see if my natural supplements are working at all. THEN if not, maybe Fosamax................
Forteo is the "Big Gun" for osteo and with your scores, I personally would try somethng else first.
That's exactly how I was feeling all along, but I listened to the dr. I wish I could find a better dr. Right now I'm having some stomach problems, and I also have a thyroid issue. I always thought that it was the thyroid and my high sodium intake that snowballed to the osteoporious if that makes sense. I did make a mistake with my score, it's 2.9 in my spine, and osteopenia in my hips and thigh area. Thank you for the good insight. What do you take? I was taking the Forteo since 11/30/09, and everytime I use that pen, I get so scared!
Hi again Pat,
Take calcium, Vit D, Vit K2, magnesium, fish oil, just added Strontium......all I read says it can increase bone, and few side effects. K2 is supposed to offer good fracture protection and is the new "very important" vitamin for bones.
I chose "Drs. Best" Strontium, avail. at health food store. Have never taken the osteo drugs. Last Dr. handed me a paper that said Forteo or Fosamax. Most the Drs. deny side effects which I find amazing. I really think they are unaware. They should get on some of these patient sites and read up! One Dr. got really snotty w/me when I resisted the drugs. Goodbye to her! They should go on "askapatient.com"............so many horror stories on Fosamax, Boniva and Actonel. I know many people have no side effects, but there are quite a few that do..........and I don't think I want to risk being in that group that gets severe reactions. I also think exercise is very important and have gotten some good ones online that are good for the spine. Also go to gym every other day, do hip abduction machines, stretchy bands for upper body, treadmill, and had been in Phys. Ther. so had the therapist show me some other stuff for spine etc. If you are interested in natural methods, womentowomen.com site is good, also saveourbones.com. Just read a very interesting book "The Myth of Osteoporisis" by Gillian Sanson. There is SO much more to this condition than T-Scores! Trying to eat more fruits and veggies.........veggies being the big thing to help bones, so I read. Keeping your body alkaline is important........if it is too acid, calcium is leached from your bones. Pop is very bad, so only drink water and juice now. Had a severe back injury a year ago.........treated as a sprain but now wondering if it was a fracture??? At the time, I did not know I had osteo. In the past few weeks, my chronic back fatigue/discomfort has really eased up. I'm not sure why..........maybe the strontium???? But I sure do feel better. . I don't know a thing about thryroid issues. I had been on steroid drugs for allergies years back.........that's what probably helped deplete my bones. Other than that, no known reasons.......... hereditary, too. I'm a horse rider so this condition is quite a problem.........must be very careful........walking only now and hope for the best! I just can't quit riding or get rid of my horse! Not yet anyhow.
Wanted to add, my new Dr. says he is a little leery of Forteo re: only studied for two yrs., much is unknown about it. He does use it for some patients. HE has low bone density, and I asked him if HE would use it..........he would not say Yes. He said even with my scores, 3.3 and 2.3 in hips, I may never fracture. Family history is a good clue too. My mom has had one frac. (age 89). The Dr. thought that was great and said I could be just as lucky! Also so important to stay active and avoid falls, have good balance...........falls are the main reason for fractures in the elderly. Interesting fact: 63% of fractures occur in people who do NOT have osteo! Also, I am sick of worrying about osteo! I am going to "lighten up" and hope for the best, live normally but cautiously and keep getting my bones tested. Might try Fosamax IF bones are worse in August scan, tho don't want to.
This is very interesting to me as I just got my results back for a severe broken femur.(I took a very severe hit that would have probably broken anyones femur according to my surgeon. I'm 52 years old with newly diagnosed osteo. I have never broken a bone and have been until now very althletic. I come from mother and sister who went thru early surgery for female problems. I never went thru that but I did go thru total menapause at 45. Just not liking what I'm hearing about this drug and I am young and quite healthy and not thinking I want to get involved with taking this drug. Advice please.
My mother who is 54 started using Forteo about 2 months ago every day. In the past month about every other day 5 minutes after she takes the injection she gets a horrible pain in her lower back to the point where she can't move or talk or even breath, it takes about 5-10 minutes and it goes away...i have been trying to research online but can't find anything about this side effect at all and i know it is caused by Forteo because she didn't have this symptom before. Of course her doctor doesn't think Forteo is causing this. As I read through the posts I see she's not the only one experiencing this. Also it is disturbing to know that some peoples condition is not approved by this drug at all :(
My mother who is 54 started using Forteo about 2 months ago every day. In the past month about every other day 5 minutes after she takes the injection she gets a horrible pain in her lower back to the point where she can't move or talk or even breath, it takes about 5-10 minutes and it goes away...i have been trying to research online but can't find anything about this side effect at all and i know it is caused by Forteo because she didn't have this symptom before. Of course her doctor doesn't think Forteo is causing this. As I read through the posts I see she's not the only one experiencing this. Also it is disturbing to know that some peoples condition is not approved by this drug at all :(
My mother experienced severe back pain as well as hip and shoulder pain while on forteo. Her doctor didn't take her off the forteo but rather treated her pain with medication. The Pain never completely went away and at time she could not get out of bed. My mom was on the forteo for two full years and DIED exactly two years later with STAGE IV spine cancer. She found out only two months before she died that the severe pain in her back, hips and shoulders was CANCER! TERMINAL! She was lead to believe that Forteo was going to strengthen her bones and prevent fractures, instead her spine, hip and shoulders were completely destroyed ...a mass of cancerous tumors. No severe pain or cancer prior to Forteo... I truly believe that my mother would be with me and the rest of my family today if she would have never taken forteo. Her life was taken away from us way too soon....I wish she was alive to share her story with your mom and others who are suffering. I would encourage your mom to take the natural route...enjoy her health and enjoy her family. Only GOD can create human bones, not man.
Reply to anonymous......your comment helped. I, too, have had neck pain and pain running up behind my ears. Started after taking Forteo for 3 months......have been wondering if it was my arthritis or the Forteo. Am going to stop the Forteo and see if the pain subsides. I am almost at the end of my fourth month
My husband is taking Forteo. He's stopped it twice because of side effects. The first time he stopped was because of the nausea, bone pain in legs, arms and hands, and feeling like he was "in a hole and couldn't get out". He also had night sweats. At his doctor's encouragement, he started it again after a two week lapse, but changed the time from evening to morning for taking the shot. Nausea went away, but bone pains and night sweats remained. He has stopped it again, but is trying to decide if he should continue it. His osteoporosis is chemically caused by the drug prednisone which he has taken for about 20 years for an autoimmune problem he has. Today, he said he's going to give it another try. I'm very concerned about the bone pain and no one (not the doctor, Lilly or Forteo, are able to give us some hope that the pain will stop over time. He doesn't seem to have as much energy when he takes Forteo. When he doesn't he can walk 5 miles every day and is very active. He's 74 and after reading the other problems in seniors, I'm wondering what his alternatives could be. He took Fosamax and Boniva for about 10 years total but that, too, has serious cancer side effects if taken for a long period of time. Has anyone else had the bone pains and do they go away?
Hello ,Wanted to give a up-date about my side effects. Took Forteo for 2-weeks, did o.k..Then had severe pain in my spine after taking injection, call Dr. , reply was that the forteo had nothing to do with the pain. next time it happens go to the emergency room, is what I was instructed to do. Next shot of Forteo wasn't as severe , started having pain in spine and some cramping after about 10min.after injection but pain manageable. Following 2 injections symptoms stay the same. Then on Sunday Feb.10 after taking injections for 2-1/2 weeks pain returned,
Started 6-8 mins after injection, pain started in spine then wrap around thigh until it enter the right knee. Pain was unbearable to the point of nearly passing out. After about 20-mins pain started to subside. Call Dr. said not to take injection for Monday see him on Tuesday. After seeing me We determine not to do the shot anymore. Dr said he hasn't had any patients show these kind of symptoms before. I am 46 years old, had many surgeries within a 3-year time frame, broke 5 ribs in Dec 2007 for no apparent reason then found out the severely of my osteoporosis that I did'nt know I had. At this time don't know what to do, It is Feb. 14th and still having pain in right knee. Had to use a wheel chair for first time in my life, Dr. said pain should go away. Can anyone give me any advice? Thanks, Connie
How have things worked out for you? Have you reported your condition to the drug company?
I to have been taking Forteo for 9 months. I'm only 35 but I have IOP and 7 broken bones from sneezing. With two small children I'm concerned about the long term effects of Forteo. I have benifited from the 9 months of injections as my back was broken in 3 places and did not heal at all prior to the Forteo treatment.
Columbia Presbyterian Hospital in NYC is doing a study on young wemon with IOP and the impact of Forteo. I can't wait for the results as I have no other treatment options.
I also have noticed some side effects. Spinning room. Low energy. Sick stomach. I started taking it at night plus sleeping pills. This solved the side effects problem for me.
I have had 6 various infections in the last 9 months as well. Before Forteo I had no infections for the last 10 years.
Cancer is my big concern. Could bone cancer be the underlying cause of some cases of OP? Perhaps at an early stage that the Dr's missed?
Dear Dr. Gonter,
I would like to say Forteo has been very important in helping my back pain.
I am a 51 year old women, with a family history of osteoporosis and compression fractures. I went through surgical menopause at age 47.
I was diagnosed with osteoporosis in 2005.
The biphasphomates(please excuse my spelling) gave me unbearable pain in my bones. Forteo was prescribed by my rheumatologist. I started last year. I've had no side effects.
I feel grateful for this med, and wish I could take it longer than the maximum two years.
This is one of the very few positive results from taking Forteo. Most commentaries are horror stories. I would like to hear from others who have taken Forteo for at least a year and who have had great results. By great results, I mean a greatly improved bone density test. Are there any such people out there? - Patricia Coveny, 3 week Forteo user.
I have just finished a two-year stint using Forteo for my osteoporosis. My last bone scan showed a better T-score as well as increased density, putting me into the osteopenia category. This is the great news! However, since I can no longer take the Forteo, I am experiencing the extreme pain in my bones and muscles experienced before use of the drug. Because I am in a class of patients that have had surgical removal of small intestine, I cannot use medications taken by mouth as they have no effect. I am currently awaiting infusion with Reclast, which will take place in September. My doctor cannot explain the pains I am currently experiencing; I am wondering if there are "withdrawal symptoms" after using Forteo and if anyone else has experienced these and if they go away. It would be good to know as I would like to use it again instead of trying a new drug. Why has it been limited to a 2-year program by the FDA???
As I mentioned, I have had very good results with Forteo, with no side effects.
I hope you are having a similar response.
I had a DEXA scan last Thursday.
It showed a signicant improvent in my spine.
I had been having severe pain in my back.
After the first month of Forteo injections the pain was a lot
better, with continued improvent as I took the medication.
My next step is a Reclast infusion.
I wish you the best.
And that you have a similar response.
I had an improved T-score as well as you did.
I think the reason the FDA reccommends only 2 years is the possibility of
bone cancer.( not enough studies have been done for approval)
I, too, am now going to have a Reclast infusion (next week)
I have not felt a return of the back pain that the Forteo helped, yet it
has not been very long since I stopped taking the medication.
I am happy for you that Forteo has helped.
I wish you the best, and that Reclast can help.
I am wondering why you cannot have the Reclast infusion before September?
I hope you get relief from your pain.
Thanks, Julie. I guess rats get cancer from just about anything in massive doses. Hopefully, people are smarter than rats and don't overdose! Anyway, I had the Restasis infusion early in September. For the first week or so, the pain continues and I was really tired. Then, the pain was gone but my energy level is still quite low. I am being checked for other possible causes. The procedure was 15 minutes and quite painless, except for the IV, of course. I won't know the results until next July when I once again have a bonescan. Thanks again for the info.
Fourteen months ago, at age 49, I stumbled, fell, and received three compression fractures in my lumbar spine. That is how I found I had severe osteoporosis. I'd been having a lot of pain in certain joints prior the diagnosis; almost debilitating. Additionally, the pain from the broken back was intense. My phsycian sent me to an endocrinoligist who started me on Forteo.
I've had no side effects at all from the Forteo. My bone scans show ever increasing positive results. I have now fully recovered from the fractures. Additionally, there has been significant improvement in the pain I'd had prior to the fractures, before receiving my diagnosis; my fine motor skills have improved as a secondary result. I now have a much better quality of life.
My only problem is that my health insurance premium has recently been increased to be out of my reach. I'll be unable to continue the Forteo, which is a great concern, since I've had such overwhelmingly positive effects from the treatment. It will simply be unaffordable to continue.
Dear Judy
I had been on Forteo for the past 22 months.....my dexa showed high T scores due to hyperthryodism. I am 70 years old, never had one problem with the Forteo except being a pain in the neck doing it every night. Now my dexa showed 20% improvement in my spine and 14% in my hips still putting me in osteo. My GYN suggested that I do Forteo for another year, however, my family doctor wants me to do Reclasp. I am scared to death about the Reclasp and I am at an impass as I don't want to try another drug that can cause problems. Can't take any of the pills as I have gerd and they all affected me in a bad way. Where did you get the information about using Foreto for longer than 2 years.
My husband is also on Forteo with no side affects. His was steriod induced.
Mary
My doctor put me on Forteo because I am taking Aromasin for an estrogen active breast tumor. Aromasin causes bone loss. I already had osteoporosis when the breast tumor was discovered. I have had good results from Forteo. I have been taking it for 23 months. My back pain has almost gone away. I believe this is from taking the Forteo. I will be finishing it soon and the doctor is going to try Reclasp as I have three more years to take Aromasin. I have had no side effects while taking Forteo. I am grateful for it!
I was on Forteo for two years with no side effects and 8% improvement each year. I have been off 1 year received the Dexa Scan results this week, and I lost 8% in my spine. I have family cancer history. My doctor wants me to start Forteo again, but I am fearful. However, I can't keep losing 8% a year. I am on Evista which should have maintained my gains. I don't know what to do.
t
I just had my dex scan last week after taking Forteo for 23 months and my resuts were amazing. I don't have Osteoporosis any more, have Osteopenia again.
Hip - DualFemur went from T-Score of -2.7 to -1.3
AP Spine went from T-Score -2.0 to 0.6.
Taking the last month of my Forteo and then going on weekly again for the next two years and if my next scan is still good will stop taking anything Doctor said.
I had no side effects but did worry about the bone cancer warning but will continue to get my annual blood work and hope for the best.
Hope that helps others with concerns on this drug. The only reason I agreed to take it was when I went to the class to show us how to use it there was a doctor with his mother who was going to take it so was a possive sign for me.
Hi Angela, sorry I miss read your post
I thought you were nearing completion, but I see now that you have a way to go. I hope your remaining time on Forteo continues to be easy and simple, filled with wonderful results. Your scores are fantastic, so I hope that gives many some encouragement about this type of treatment.
Join us any time; we'd love to hear how you are doing if you like to Post a Comment, or a Sharepost, or even Ask a Question. We love to talk to our members and I'm sure you'll find some one in a similar situation to yours that you can chat with.
Continued success with Forteo!!
Pam Flores (community leader)
I have been taking forteo for nearly 2 years without any side effects. My dexa scores of November 2008 put my lowest scores into osteopenia range. I'll have a dexa on November 21 2009 and finish my second year. I wish I could continue to take forteo. Unfortunately, I can't and I'll probably resume taking fosamax. A lot of people have benefited enormously from forteo. I'm sorry for all of you who had debilitating side effects because it's a wonderful drug. Good luck out there!
I have had fantastic luck with Forteo. I was dianosed with osteoporsis after many years of having liver disease. I finally had a liver transplant which was a complete success. I was left however with multiple compression fractures plus a couple of fractured ribs and cracked pelvis. My liver specialist referred me to an endocrinologist who put me on Forteo. I have been on it for 1 year and my bone density has increased by 42%!!! My doctors were floored when they saw these results. Now my bone density is considered to be in normal range! In addition to that, I can now have surgery on my back which they said 2 years ago could not be done due to poor bone quality. I was very skeptical about this drug but I am living proof that it works. (I am a 44 yr old female).
(The first week or so I did experience hot flashes immediately after my dose, but that was the extent of any side effects.)
jstronnes@hotmail.com (Jill)
Dear Dr. Konter,
I do not wish to be unsympathetic to the people who have had severe side effects to Forteo.
Just wanted to show it can help some people..
My bone pain was excruciating when I took Fosamax, even though my blood calcium levels were normal.
I think this is an uncomman side effect and I am perplexed as to what caused the pain.
The pain subsided slowly after stopping the Fosamax.
My wife had severe Osteoporosis but needed spine surgery for severe disk disease and collapse of two vertebrae. After being on the drug for one year her 'osteo' was so much improved that she was able to have her necessary surgery. The 17" of rods in her back could not have been installed otherwise.
Absolutely fabulous result for her!
i've been taking forteo for 4 months.is it normal to feel chest pain?
My mother has recently started taking Forteo and she is having a rapid heartbeat. Always right after she gets the injection, it feels like her heart is pounding outside her chest. She has talked to the doctor's about this and they seem to think the Forteo is not the cause. Is your chest pain similar to a rapid heartbeat?
My mother has recently started taking Forteo and she is having a rapid heartbeat. Always right after she gets the injection, it feels like her heart is pounding outside her chest. She has talked to the doctor's about this and they seem to think the Forteo is not the cause. Is your chest pain similar to a rapid heartbeat?
I have been on forteo for about 21 mos. I experienced very rapid heart beat. It really concerned me. My dr. seemed to never have heard of this side effect from forteo, but she did record it in her notes. I had been taking it before bedtime, and I was advised to take it in the morning, and this has helped. It seems that laying down after the injection made me feel like my heart was racing. I no longer have this problem when injecting in the morning. After the first full year of using forteo, my spine gained and my hips lost bone mass. Hopefully I will have gained more in both areas....can't wait to see.
I am a healthly, athletic 43 yr old female. Had ostopenia and a hip stress fracture (from overtraining, ironman triathlete). My dr. put me on forteo 6 months ago and just recently realized that I have been having severe side effects. My entire body feels like I have been hit by a train. I have never felt this bad, even after doing a race. I was thinking that I was just getting older and training was getting a little harder on my body. I wasn't motivated and wanted to sleep all the time. Finally, I went for a run and was trying to figure out what I had done differently in the last few months to make me feel so bad. Nothing, except for the forteo. I immediately stopped it. I am starting to feel like my old self again. I am thinking that the risks do not out weigh the benefits in my situation.
My mother took forteo for 2 years. Her dr. never followed up with blood tests of any sort. She was a healthy young woman, 55 years old. Very active and energetic. She was diagnosed with cancer Feb 1, 2008 and passed away March 3, 2008. The cancer was so bad in her bones, that by the time they found it, she had such low blood counts, blood transfusions didn't even help. No doctor would even touch her to put in a port for chemotherapy, because her blood counts were ridiculously low. The only option was for hospice care at home and keep her comfortable. Sorry about the bad news, but she may have been that "one out of a million cases"
My grandmother took her Forteo for two years and experienced amazing results. It was a huge investment for me and my family, but soon after she started, her pain was gone, she no longer needed a walking cane and her BMD increased substantially. We were nervous to start her because of the bone cancer, but the drug company said only one person has had a causal relationship with Forteo + bone cancer over 6 years. You should inform the company immediately to let them know about your mother.
how long after taking Forteo was she diagnosed with bone cancer? I am sorry for your loss-my daughters would be devasted. I am around -4, and my daughters have the same bone structure. I feel I need to fix my bones because my daughters will probably end up with it too. My grandmother died from a broken hip.
I am sorry to hear that your mother died at such an early age. You mentioned that she had cancer. Was it identified as osteosarcoma? Could she have had a different cancer that had metastasized to the bones? Not all bone cancers are primary cancers. A pathology report is helpful in classifying any cancer and would be necessary before any cancer could be attributed to Forteo.
I am a new patient and am scheduled to start forteo in 5 weeks, but after reading the comments on this site, I'm scared to death. there are more negative comments than positive and that worries me. Dont know what I am going to do. Need to read more about the side effects.
I'm also awaiting training and forteo perscription and after reading some of this info, I'm scared also. I'd like to know whether I'll improve enough to warrant any of the side effects. Will I get worse if I don't use? I have other problems also, gerd so can't take Fosamax; renal deficiency; diabetes; and COPD. How wiill those problems relate to Forteo? I'm told I'll have no problems by doctor's office, but I'm not sure.
I started Forteo last month; with the first injection I had dizziness and rapid heartbeat. I had read the possible symptoms so it did not frighten me, I just lay down until they went away. I never had these symptoms after the first injection. I had severe sweating maybe a couple of times after being outside in the heat, and my leg bones had pretty bad cramping for about three days. I have also experienced some stomach pain but that has also subsided. On the upside, I feel stronger... don't know if this is psychological or not, but I feel stronger. On an overview, I feel better taking Forteo. Don't be afraid, if side effects are too severe or last longer than normal contact your doctor. But I would recommend it based on my experience.
I started Forteo July 17, 2009. I've taken it before for about six months, stopped because developed either high or low calcium count, that was in 2004. Dr. says this is the only thing left for me. Will attempt to take it now for nineteen months and keep my fingers crossed. After reading some of these blogs it scares me but what choice do we have. I'm keeping a journal and hopefully it will help someone else. Lily Co. has been really great listening to my concerns. Good luck to all of us.
I started my treatment about 16 months ago. I have had no serious side effects other than pimples that i can live with. but generally i am very healthy...have hi blood pressure that was also inherited. After one year treatment, my bone density did not increase, doctor was disappointed. But the way I looked at it was it did not decrease. I am scheduled for another bone density at end of March. that will determine whether I will complete the two year treatment or not. So far I am ok. Obviously i have to still be careful with what i do but i am still very very active and there have been no further fractures. good luck!! P.S.
I started my treatment about 16 months ago. I have had no serious side effects other than pimples that i can live with. but generally i am very healthy...have hi blood pressure that was also inherited. After one year treatment, my bone density did not increase, doctor was disappointed. But the way I looked at it was it did not decrease. I am scheduled for another bone density at end of March. that will determine whether I will complete the two year treatment or not. So far I am ok. Obviously i have to still be careful with what i do but i am still very very active and there have been no further fractures. good luck!! P.S.
62 yr old wife suffers so many serious side affects from fosamax [aches, pains, and so dizzy she cannot drive, jaw bone loss, dentist has warned her] that she stopped exactly 11 days ago. But the side affects have dramatically increased--dizzy, pain, light headed, but we hope these are withdrawal symptoms. The idea was to begin fortero, but after all the problems that fosamax caused, and reading these horror stories, she is really depressed. We have no idea what to do. Her doctor says to stay on fosamax, but wife can barely function with that med. Really really confused.
I was borderline osteoporosis. Started first with Fosamax but had to stop after 10 days because of severe joint pain.
Then went to Evista, which worked to improve bone density, but was concerned about the blood clots it can form. Then went to once a week Actonel, which also worked but was a bit inconvenient. Am not on once a month Boniva, which appears to be working - there is some minor joint pain in the hands, but it is tolerable.
I posted on this site for the first time last weekend. I have been off Forteo 3 weeks today and still suffering from symptoms that are causing me pain. I started Forteo in Dec/2007 and was excited that I qualified and thought I would finally stop experiencing stress fractures and ruptured disks. Almost immediately I suffered from insomnia and a rapid heartbeat after administering the drug. I believed the drug was helping and I thought I was feeling stronger when doing weight bearing activities. In June I started to have pain in hip bursae, Both hips have been involved and I have had cortisone injections that seems to have helped the trochanteric bursa on both sides but the Iichial bursa, especially the left side remain problematic. It has been a week since the last injections and the pain continues on the left primarily getting worse throughout the day. I am using a ROHO pillow that helps as does the icing of the area a few times a day. I honestly can say that the pain from the ischial bursa is scary as I have suffered from RSD for 20 years and thought I could tolerate a lot of pain because I must each and every day. I have no arthritis in the areas of concern that was believed to be the problem until x-rays showed differently.
I am still having problems with sleep and some increased heart rate periodically and that scares me. My physician said that I should resume taking Forteo last week but I feel this would be a mistake as I am not sure it it not the cause of my 4 month bout with bursitis.
Is Forteo causing more problems then presenting successful outcomes? There are not that many people taking the drug but I do see many complaints posted for those taking or having taken it. Any totals of those patients and lists of the various complaints regarding the drug? Not one doctor that I saw because my rhumatologist was on maternity leave would even acknowledge the question about Forteo causing any problems. My internist treated the trochanteric bursae but told me that there were no other bursae and that I could not not have any steroid injections for 6 months. That day my rhumatologist gave me 2 steriod injections It appears there are many questions and concerns and I really feel no one is addressing my physical problems.
Who is documenting and validating Forteo complaints and outcomes? Lily has given me some support but no one has contacted me for further information as indicated that Lily Pharmaceutical does to follow-up with all calls regarding their drugs.
I am on this site researching Forteo. About one year ago, I had terrible bursitis in my right hip. A co-worker recommended her neuro-musulcar therapist. It seems my bursitis was caused from tight muscles (the IT-band). It only takes about 3 visits to the neuro-muscular (massage) therapist to notice a marked difference.
Being unable to use the "other" osteo meds, finding myself with a broken hip 9 years ago and entertaining severe osteo, my specialist advised Forteo. Currently am in my 8th month of treatment and can say nothing bad about the exciting new drug made possible to patients! Keep up the good work Lilly. Many need your help! Jo McMillen, M.T. (ASCP).
I have just finished 2 years of Forteo. Luckily, I had not major side effects...only the hot flashes and vivid dreams. Unfortunately and disappointingly my bone density test did not show much improvement. They are not talking about my going the reclast route. I have read horror stories about that so I am really wondering what to do. Last month I had my first vitamin D check and it is way low. I wonder if getting my vitamin D level up would solve the problems, as in I can absorb the calcium with the D. Fortunately I have been lucky with having no fractures.
I am no doctor, but there have been a lot of stories reporting studies showing that having satisfactory Vitamin D levels are critical for calcium absoption and bone maintenance and construction. You should make sure you are taking enough, supplement if necessary.
I would have expected your doctor(s) along the way to have done a test for blood Vit D.
I'll have a new DEXA next week. Hoping the regimen I chose after careful study will indicate improvement. I'm a young 59, life-time athlete/marathoner, with a prolactin-secreting pituitary microadenoma that has suppressed estrogen production since I was 30 years old. Low estrogen led to low bone density in this otherwise extremely healthy woman. After DEXA indicated low T & Z scores, I read up on and started using daily 900mg Strontium (NOT Strontium 90/no relationship) used in Europe as Strontium Renalate and available in US as Strontium Citrate (absorption not reliant upon the form). In addition, I supplement with calcium -taken separately as each competes wth the other for absorption,- Vitamin D 3, Ipriflavone to enhance calcium absorption, proper magnesium ratio, and adequate bioidentical estrogen/progesterone , good diet & exercise regimen -even vibration exercise therapy. I feel great, looking fw to a positive result! MD prescribed FORTEO-- without telling me about any side effects or the bone cancer studies-- I doubt I'll use it. Good luck to all.
Hi, I too am 59 and was just told I had mild osteoporosis in both hips, and moderate in the spine. Without consulting with me on the side effects etc. or the PRICE, my Dr. said I should start Forteo. After researching it on line I am shocked that there are so many awful side effects. I have been looking into "Natural" treatments, including strontium and other programs. The biophosphates don't sound so great either, please let me know what you find out from your DEXA scan. Thanks and good luck to you!
I was told by my MD at the Mayo Clinic not to take strontium because it tricks the Dexa scan machine into thinking the bones are stronger because Strontium is heavier than calcium. There was a recent study that showed the quality of bone built with the aid of strontium is very poor. The goal is not to have higher DEXA scan results it is to have stronger bones. Angela
To Angela, from Mar. 2010.. Anyone please tell me about the controversy concerning strontium. I have had it suggested to build bone strength, etc. I am facing the beginning treatment of Forteo, and am truly scared because of all the negative side effects that have happened to so many. I am told that at 57 I must take this as the only way to actually build bone again. Never taken any drug for bone. I did not know that I was such advanced stage of osteo. My t score for hips is -3.04. Anyone who feels they can lend info to my about the Forteo or other ways to approach, please respond. Need to make decision in 4 weeks. Thanks so much Kay
To Angela, from Mar. 2010.. Anyone please tell me about the controversy concerning strontium. I have had it suggested to build bone strength, etc. I am facing the beginning treatment of Forteo, and am truly scared because of all the negative side effects that have happened to so many. I am told that at 57 I must take this as the only way to actually build bone again. Never taken any drug for bone. I did not know that I was such advanced stage of osteo. My t score for hips is -3.04. Anyone who feels they can lend info to my about the Forteo or other ways to approach, please respond. Need to make decision in 4 weeks. Thanks so much Kay
Hi Kay, welcome... Have you been checked for secondary causes of osteoporosis? You might want to consider this before making your decision.
I took Forteo for 2 years, after having 6 vertebral fractures, and did really well on it. That said, I had all the testing done for secondary or medication causes before I started the Forteo. If you have some other problem that causes bone loss and it's diagnosed, that could be treated completely differently than osteoporosis is and your scores could improve.
Good luck deciding what to do and if you haven't had these tests or looked at the medical/medication causes, I would certainly consider it. The links to these are in the above paragraph. Let us know how you do...
Hi Ann, I forgot to mention that if you'd like to read more about Strontium Citrate, we have a members review of Strontium Citrate. Just remember that this is a members results from this supplement, and we all react differently to them. UC Davis is studying SC, but we don't know when the results will be avaliable. There's also a company that is in clinical trials on Strontium Malonate, but as yet, it hasn't been approved by the FDA. If you want to read more about this version of this look for Osteologix's info on Strontium Malonate.
Good luck!
Sorry I meant to say Kay Also, I didn't have any side effects from Forteo excepted for greatly improved scores and became fracture free after many years of suffering from these. That said, we all react differently to these meds, and my experience may be different than others. Here's another thread we did on Forteo experiences if you want to read it. Just read as much as you can and go with your gut instinct, with the help of your Dr., who I hope will give you an unbiased review of the drug. But it is true it's the only drug that creates new bone, all the others just slow down bone loss, but it absolutely has to be your decision.
Take Care...
I'm a 65 yr old male with a bone density score low enough to make Forteo the drug of choice. My condition was picked up during a shoulder x-ray previous to a surgical shoulder repair. After almost 1 year on the drug, no side effects or obvious issues. I was a long time user of Aciphex for chronic indigestion, and switched myself back to the less effective H2 antagonists with the idea that they were somewhat less effective at shutting down acid production. Since acid is necessary for Calcium absorbtion I wondered if there was any connection between long term use of PPI's and Osteoporosis. I found one non-conclusive study.
p.s. I also came up with low testosterone which may be may be more pertinent here.
The article on Forteo never once discussed absolute risk or even the inflated statitistic that is often used in medical research--relative risk. Absolute risk is really what counts. Moreover, the doctor did not discuss longterm data on safety or efficacy of Forteo; probably because there are none! Now that bone loss has been medicalized and termed a disease, instead of a consequence of aging (one death/per person), many people will be treated, inflating health care costs even more without reducing mortality, or only marginally reducing absolute fracture risk. Read Nortin M. Hadler M.D.-- The Last Well Person and Worried Sick. Also read Gerg Gigerenzer-- Calculated Risks. Be skeptical, ask questions and do research.
Your assumption that osteoporosis is a consequence of aging is absurd!!! I have witnessed my 29 year old son suffer from this condition and the last I heard, 29 was not considered old. He never took steriods, was active and lived a normal life until two years ago when he broke one foot 5 times and his toes on the other foot. Get your facts straight and never assume.
I am so sorry to hear of your son's condition. As a parent, I understand why you reacted to my comment with such hostility: you are afraid and looking for answers. My heart goes out to you. However, you over-looked or failed to realize that I was talking about a different population than your son. Your son is obviously out of the norm and has a serious condition! If you haven't, you should encourage your son see an endocrinologist and research environmental chemicals and products that could effect bone density. Scientific American had an article a few years ago (sorry I can't give exact ref.) explaining the complexity of the biochemical pathway involved in bone formation and destruction. If your son has a defect in this pathway, he may be more prone to osteoporosis?? One can't change their genes, but epigenetic factors in the environment can be altered. Lastly, your son may be faced with some difficult choices about treatment and a current osteoporosis drug may be the only option. But, if he has some other metabolic or endocrine problem that is acclerating bone loss then perhaps that can be corrected and he can avoid long-term treatment with osteoporosis drugs??
I wish you the best and hope your son gets the information and help he needs.
Dear STG: I appreciate your response and the fact that you read and understood my statements. I can assure you we have connected to every Physician we could find and researched every word that has been spoken to us. My son was dx with osteoporosis only after a fracture and even that took six weeks to confirm. He is young and otherwise healthy so we had to find the right doctors and the right medications....thus the Forteo (which came at a cost of apx $12,000.00 last year). We ended up in New Orleans at the best facility we could find with the best endo guy we could find. After a multitude of tests and tears, his "only" problem was no Vit-D for some reason. I do not mind stating that the Forteo has worked. His 5 fractures finally healed as well as the other broken foot. Apx. 3 months ago we were terrified again when the doctor thought his back was fractured. By the grace of God (and I literally mean that because we are a praying family) the dx was incorrect. We along with his doctors believe he is a testimony to prayer and the use of Forteo. This drug may not work for everyone. But it has worked for my son. What choice did we have anyway. I would encourage anyone, regardless of the condition or disease, to become involved and never give up hope. We must all fight battles and while we may very well loose a personal battle, our efforts may help future generations! Keep us in your thoughts and prayers. And should you hear of anything new or a writing of interest...let me know.
I am a 53 year old female who suffered a hip fracture this past January, but is in excellent health otherwise. It was only a hairline fracture in the femural neck, but a hip fracture nonetheless. It was a result of a fall from a car onto the concrete. I was diagnosed with osteopenia shortly thereafter with a Tscore of -1.4 in both hips. I am NOT postmenopausal ... more like mid. My MD wants me to go on forteo injections to increase my bone mass to avoid future fractures. The injections un-nerve me a bit ... but the side effects of the oral meds un-nerve me even more. My surgeon and ob/gyn find this course of action too aggressive for my age and Tscore. Would you agree?
I took the Forteo injections over 2 years ago. Had a significant increase in bone mass! However, after the 2years...I had lost most of that due to my body simply not absorbing the fosmax/actenol..ect....Have had my first Reclast infusion. Now, my 83 year old mom has osteo really bad also. She fell and shattered her wrist/forearm. There wasn't enough bone to put a plate in, so the external extenders were used. She began Forteo injections within the first week and just last week when the screws came out, the dr. said there was enough bone that he could break it and repair better with plates...at 83 she simply smiled and say 'no way'...this really makes me a believer in Forteo. Other than leg cramps neither of us had any serious side effects.
I had osteoporosis (T scores -2.5 with a history of fragility fractures--compression fracture at T9 and numerous breaks of metatarsals). I did not benefit from 2 years of Actonel. To the contrary, I had dynamic bone loss (8-9% from baseline) and suffered additional fractures in my thoracic spine.
I actually had to talk my endocrinologist into Forteo. During screening labs, I had slight elevation of intact PTH and serum calcium. Parathyroid sestamibi was negative, but he was still hesitant and I went without treatment of any kind for at least 6 months.
I persisted in my requests for active treatment and began Forto in November 2006.
My intact PTH and calcium normalized, as did other biomarkers. After 2 years on Forteo, I did not have improvement in bone mass, but my T scores stabilized at around -3.2 with no subsequent fractures despite a significant unprotected fall on ice (enough to cause presacral edema and some free fluid on pelvic MRI that resolved in 6 weeks or so).
After Forteo, I had an infusion of Reclast, which was convenient, but I have jaw issues and had joint pain afterward. I'll have a post-Reclast DEXA in July and I'm betting my T scores are stable, but I really don't want any more Reclast and would return to Forteo injections if I hadn't already used it for 2 years.
I'll try not to be too much of a pain when I see my endocrinologist in August (and even a good listener), but I'm not content to let my osteoporosis go untreated.
I had to wait at least 6 months for Reclast (to correct a vitamin D deficiency). I'm a small boned postmenopausal Caucasian. I can't take HRT due to chronic liver disease (PBC stage 2-3). Bisphosphonates haven't worked for the other women in my family and I see the devastating effects of progressive osteoporosis every time I look at my mother.
I'm actually thinking of asking about the biologic that's in clinical trials. I've had enormous luck with other biologics (e.g., Rituxan as off label treatment for PBC, which basically normalized my liver biopsy and normalized all lab parameters for the first time since 1998, including IgM and GGT). We'll see. In the meantime, relevant to Forteo, I'm glad to say that I had a very positive experience.
Hi all,
Thought I would scan through the comments looking for feedback that would help me decide about putting my 24 year old daughter on Forteo. Well after reading the comments, h!!! no am I putting her on this drug! She is severely handicapped and non vocal (we have a hard time telling when she is in pain, she doesn't cry either) She was diagnosed with osteoporosis years ago, we started the Reclast last year. She really should be on Forteo (her numbers are that low), but her dad refuses to give her the daily injections. I see his point and after the comments, I really see his point. Unfortunately she has fallen and broken her arm 2 times since Feb., I'm afraid we are in a downward spiral here. I don't know what we're going to do. Thanks Nadine Larcomb
I suffered a leg fracture after approximately 13 months on Forteo. The tibia, fibula and medial maleolus were fractured in my right leg and ankle. During the surgery to repair the fractures, my bones were so soft that some of the eleven screws used to put in two plates and stabilize the comminuted fracture in my ankle, pulled through the bone before the surgeon could finish the surgery. Obviously, Forteo was not helping me. Be sure to follow your progress frequently if you decide to take it. I would recommend taking something else!
I have been working with patients with osteoporosis for over 15 years. What I get from reading this blog is that many people who are participating in this blog may not have been diagnosed correctly in the first place. In other words, have all the right lab tests been ordered and do you feel you have a grasp of what caused your osteoporosis. Often what is seriously missing is nutritional support. This is critical with or without medications. I am not a fan of bisphosphonates for most people. Forteo, for the right person is amazing. Yes, blood work must be followed, for everyone on medications.
A balance between conventional medicine and alternative medicine is the way to go. For those of you who may be interested I offer a webinar series on osteoporosis that up to date information regarding medications, lab work, nutrition and exercise. www.LaniSimpson.com
Dr. Susan Brown did a wonderful job breaking down forteo's risk/benefit analysis for the common person to understand. Here's the link -
From one injection I experienced servere side effects, rapid heart rate, high blood pressure, body feeling like it is on fire, I felt like I was on speed, diarrehea, every muscle in my body was stiff, headaches, it felt like I was having a stroke, I could not sleep. 2 weeks later I am still having stiff neck, headaches. I was told by professionals this would be out my system in 24 hours. I do not recommend taking this medication.
I took Forteo for 9.5 weeks. After 8 weeks, I passed out. I took it one more week and that's when the chest pain and all other kinds of muscle pain, earache, stiff neck, stabbing muscle pain started. These episodes happen about every 4 days and vary in severity and longevity. I am also weak @ times. Shakey and quakey, too.
I stopped the Forteo after the first chest pain episode. I thought that I was having a heartattack. Now it has been 3 weeks off of it and I am still having pains, weakness, odd feelings, hot flashes, etc. They have lessened but I would never take this drug again. I did call Forteo connect. They took all of my info and said they would report it to their safety officer. I am seeing a heart Dr. to make sure nothing is wrong with my heart. Part of the time I felt like I was going crazy as well. Needless to say I am not happy with this outcome @ all. I did research but never read any of these forums. If I had, I would never have taken Forteo.
I was wondering if this med is recommended for me. I have alkolosing spondylitis, osteochondritis Dessecans, and possibly other such as ra. waiting to see a rhumetologist. I just recently had the tendons and cartilage pull bone off my bone in the ankle( this also happened 13 years ago to the other ankle ,yet they did not tell me it was OCD) My first time it was just put in a cast for 8 weeks and it was fine. This time after casting did not work, I had surgery where 4 screws were placed in to attach the parts and try to stimulate blood flow to this part of the bone. Hope to hear from you. I was just informed today that with everything I do have that I may have Lupus also. some things seem to go together and it seems to stretch for a long time. Thanks Marti
I was wondering if this med is recommended for me. I have alkolosing spondylitis, osteochondritis Dessecans, and possibly other such as ra. waiting to see a rhumetologist. I just recently had the tendons and cartilage pull bone off my bone in the ankle( this also happened 13 years ago to the other ankle ,yet they did not tell me it was OCD) My first time it was just put in a cast for 8 weeks and it was fine. This time after casting did not work, I had surgery where 4 screws were placed in to attach the parts and try to stimulate blood flow to this part of the bone. Hope to hear from you. I was just informed today that with everything I do have that I may have Lupus also. some things seem to go together and it seems to stretch for a long time. Thanks Marti
I am real nervous about starting this injection, after reading all the comments, I'm 53 broke 2nd metatarsal off work for six months, In June 09 broke 3rd metatarsal still off work also have a bone stimulator. I have been on actonel and now boniva, gums are swelling up and bleeding. It just sucks to have been active and now i can't even walk the dogs, gaining weight. How do you get over this saddness in our lives.
I did, I used it 5 days, when I became real tired, and my joints started to ache. I thought well I guess I did to much on the weekend, I rested all day on Monday, on Tuesday the same, but worse, then on Wednesday I called the doc they said to continue tx and call back in a week. I literally laid on the couch for five more days. Called back the doc and they said to stop tx.
I actually laid on the couch for two more weeks to get out of system. I was very achy, extreme lethargy wanted to be my no one not even my grandkids, which come every wednesday and a couple on the weekend. I made dinner one night for my boyfriend.
I did get IV Reclast the middle of November, I was fine the next day and for two days after somewhat achy, I laid on couch mostly. And I have been fine.
I actually did drink lots of water ( 12 glasses)the two day before my IV Tx and increased my calcium also before the Tx.
The day of Tx I drank about eight glasses of water took tylenol and kept lots drinking water and increased calcium level also as is instructed. Good Luck to you. Let me know how you did. God Bless
I am on my 2nd series of forteo. My bone density was -4 and I have had 2 fractures in the last 3-4 years. I am also taking calcium with vit. D and additional 50000 unit capsule of vitamin d weekly. I have a harder time taking the shots in my sides. Any suggestions how I can aim the needle more straight in my sides? I am 61 years young, but had a complete hysterectomy at age 27 and could not tolerate estrogen due to migraines. Do you think this contributed to this condition?
I am finding from research, and my doctor has confirmed, that T-scores are NOT the greatest indicator of fracture risk. Thin bones can still be strong bones. If you have never fractured, think long and hard about drugs which often have serious side effects. Be sure you get plenty of Vit. D, calcium, magnesium, Vit. K2. I am trying strontium as a drug alternative. I am not willing to be a guinea pig for the drug industry...........not yet, anyhow.
I was told by my MD at the Mayo Clinic not to take strontium because it tricks the Dexa scan machine into thinking the bones are stronger because Strontium is heavier than calcium. There was a recent study that showed the quality of bone built with the aid of strontium is very poor. The goal is not to have higher DEXA scan results it is to have stronger bones. Angela
Hi,
I am a 56 year old active female who was diagnosed with osteoporosis in May 2009 after a dexascan - t score in lower spine 4-4.5, not as bad in hips. I was shocked - did a lot of long distance hiking in 2007-08 and have been active each day for years, walking a few miles with my dog. Weight is good. Thought activity would help prevent osteo but unfortunately have a family history.
I started Forteo in September 2009 and immediately noticed that my legs felt like I had weights attached to them. Also have some cramping in abdomen after injection but this goes away within a few minutes. Legs and feet burn at times and toes cramp. Some of my joints hurt - didn't before Forteo. Also have fibromyalgia but never had these symptoms prior to Forteo - just had the sore muscles usually associated with fibro.
I have just started hiking again this spring. I refuse to let these symptoms drag me down. I recently saw my rheumatologist and reported symptoms but she said that she wants me to continue on this. My Vitamin D level was low - since increasing Vitamin D intake have noticed some improvement.
I was wondering if Forteo lowers potassium. I would sometimes get cramps in my legs similar to now when I used to hike long distances. I would then up my potassium and this would help.
Trying to do that now - eating bananas, drinking Gatorade or electrolyte enhanced water when hiking. Calcium intake is good daily. Recent bloodwork showed calcium level is fine.
Just wanted to relay my experience. I will continue with the Forteo for now, but I told my rheumatologist if these symptoms worsen I will stop.
Thanks to all who comment on this site - your comments are very helpful and interesting.
Karen
Hi Karen,
I am contacting you because of similarity when I noticed your blog post from August 2009. I am wondering how you are doing now on Forteo. I started Forteo 6 months ago, 61 yrs, active and healthy, work fulltime, walk 1-2 mi per day. Have you had any measure of improvement with Forteo? I hope you have. I live in the Boston area and would enjoy hearing from you.
Thank you,
Carol
thanks for your reply, Carol. I live in Pa. I actually went off Forteo on 4/5. Am waiting a return call from my doctor this week as to what happens next. I stopped it because of side effects becoming more severe. The side effects were gone within 24 hours of discontinuing it! My doctor suggested stopping for a few weeks - I have requested a followup Dexascan and may have to pay out of pocket for that but don't care - this is just for my own knowledge.
My doctor wanted to prescribe pain meds when I complained again about side effects before 4/5. I refused - not piling med upon med. I can't believe how well I feel without Forteo, but still must figure out what to do about the osteo.
Will post again when I see what will happen next.
Thanks for your quick reply Karen, although I hate hearing you've had side effects and have discontinued Forteo. Glad to hear your symptoms stopped. I hope you'll have positive and clear direction from your physician. Would be interested in further details if you care to share them. I think everyone who takes Forteo has their fingers crossed to some extent, hoping it will work but not having any certainty and such limited options. Please stay in touch and stay active! Carol
i wish i had found this website before using forteo. I have used it to 12 months and all of a sudden I started having severe leg cramps, cramps are so bad it wakes me up at night. I called my doctor and she told me to stop taking the injections NOW. She also did a bone test with no shown improvement. I have schedule an appointment to a rheumatologist because my back still hurts. I do take vit d3 but will try vit k
Just a followup to my comment last posted in May. I was prescribed Fosamax in May, and have noticed gradually increasing issues - again - with bone and muscle pain, most notably when I exercise such as hiking. I also had what was possibly a kidney stone attack (family history of this) two weeks ago, and am pretty sure I am having symptoms of one currently. I saw a urologist and had an ultrasound and cystoscopy (both normal) due to some blood in urine back in June. A followup on 8/11 indicated no blood in urine then, but doctor said might have had a kidney stone pass the night before when I had the episode.
I have decided to stop the Fosamax, and maintain some level of calicum supplementation - not as high as now - until my Dexascan in eight weeks, and the followup with the rheumatologist.
Hate to say it, but the treatment seems worse than the illness - osteopororis - and thinking I should stay active, eat right, etc, but skip the drugs. Side effects are simply not worth it.
Karen
Just a followup to my comment last posted in May. I was prescribed Fosamax in May, and have noticed gradually increasing issues - again - with bone and muscle pain, most notably when I exercise such as hiking. I also had what was possibly a kidney stone attack (family history of this) two weeks ago, and am pretty sure I am having symptoms of one currently. I saw a urologist and had an ultrasound and cystoscopy (both normal) due to some blood in urine back in June. A followup on 8/11 indicated no blood in urine then, but doctor said might have had a kidney stone pass the night before when I had the episode.
I have decided to stop the Fosamax, and maintain some level of calicum supplementation - not as high as now - until my Dexascan in eight weeks, and the followup with the rheumatologist.
Hate to say it, but the treatment seems worse than the illness - osteopororis - and thinking I should stay active, eat right, etc, but skip the drugs. Side effects are simply not worth it.
Karen
Just a followup to my comment last posted in May. I was prescribed Fosamax in May, and have noticed gradually increasing issues - again - with bone and muscle pain, most notably when I exercise such as hiking. I also had what was possibly a kidney stone attack (family history of this) two weeks ago, and am pretty sure I am having symptoms of one currently. I saw a urologist and had an ultrasound and cystoscopy (both normal) due to some blood in urine back in June. A followup on 8/11 indicated no blood in urine then, but doctor said might have had a kidney stone pass the night before when I had the episode.
I have decided to stop the Fosamax, and maintain some level of calicum supplementation - not as high as now - until my Dexascan in eight weeks, and the followup with the rheumatologist.
Hate to say it, but the treatment seems worse than the illness - osteopororis - and thinking I should stay active, eat right, etc, but skip the drugs. Side effects are simply not worth it.
Karen
My doctor started me on this and after 2 months I was finished with it.. My joints were hurting so bad I couldn't stand it.. Now almost 2 months of being off the injection my elbow joints still hurt..never had pain there before.. I wish I never took this drug.. I hurt more now then I ever did. I'm a 51 years old and that drug made me feel like I was 90... never again will I inject myself with that...
I was diagnosed with severe osteoporosis when I was only 38 years old. I have been on every osteoporosis medication on the market over the last 9 years. I got my best results from Forteo which I took for 2 years. I was switched to once yearly Reclast and have had several small fractures and a serious thinning on the ankle bone. I am going back to the endocrinologist and I hope he will put me back on Forteo. It is expensive even with insurance coverage, but it was well worth it. Giving yourself an injection everyday takes some getting used to, but it is not a big deal.
I do not like all the side effects,i called my Dr to tell him my face turned Blood red after I take my shot.Also you better be ready for bed it is almost a sleeping pill.
This is my 2nd month i will give it a while longer.Also I have a heat that racrs and skips beats and Forted makes it worse. Should i stay on this medicine or not? Pat Nashville,Tenn
Where are the positive reports? I have been on Forteo for 15 months, no side effects with excellent results. I'm 69 years old.
Hi Bev welcome.. I took Forteo and did really well. I went from severe osteoporosis to osteopenia and am still in the osteopenia range after 4 years post Forteo. I know that most feel you automatically lose all your gains after stopping Forteo, but that hasn't been the case with me. I did follow up my Forteo tx with Evista, since I couldn't take a bisphosphonate and have maintained the same osteopenia score for over 2 years.
Of course we all react differently to these meds, and my experience may not be the norm, but that's what happened. I also didn't have any side effects either.
Good luck and I hope you continue to improve and maintain that improvement once your 24 months are up.
Take Care
I presently have a kidney disease that is not active - membraneous glumerylnephritis. Whenever I take Boniva, Fosamax, Actenol, etc. my kidneys start dumping protein and my nephrologist asks what I'm doing differently so I have been unable to take anything. My hip measurement is -3.6. I am 63 years old and told to take forteo. I am so scared. Does anyone have any experience with kidney issues taking forteo??
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