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 process.  Should I still take Forteo?  or Boniva or zoldrenic acid?

Did you have any other health issues that may have caused the Forteo not to work?  There is so little info out there it would be great if you provided more details to help people understand why and why Forteo does not work.

I've taken Forteo for 1 year and it's already improved my osteoporosis.

How can I get free sample of Forteo to help with my cost?

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?         

I was just told the retail cost forteo is now 1,012.58 each pen. This is from CuraScipt

that supplies me. Is there any one out there getting  FREE SAMPLES ? Another company cheaper ?

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

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.

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.

Has anyone experienced a stiff neck from using Forteo?  My doctor has not heard of it as a side effect.  I have had the problem for four weeks, right after starting the injections.  If I skip a day or two the neck stiff is alleviated, but returns again when resuming.

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.

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?

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.

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.

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. 

Do not stop your medication. If you need financial assistance, there are many, many ways to receive help. Ask your doctor asap for an assistance package from the drug company. Research sites on the web!! But please get the info so you can have your medicine!!!

Despite severe osteoporosis, a few fractures, and now five months on Forteo (after no luck with Fosamax) I've quit Forteo despite a strong recommendation about its effects....$4500 (beyond insurance) a year out of pocket expense???  I share your concern about cost. 

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 Anon, Congrats on your wonderful improvements and t-scores from Forteo!!  Do you know what you'll take to maintain those fantastic results? 

I did really well on Forteo and am trying to decide what to take next.

Good luck to you...

Hi Pam,

Thanks for your encouragement.  I will have to continue the Forteo until May, 2010.  At that time, have to take another bone density test and meet with my doctor to discuss the results and the best way to maintain my levels.  Thank you and good luck to you too.

Anon/Angela

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)

Pam,

Thanks.  Good luck to you too.

Angela

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 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???

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.

The rat cancer limits Forteo use to 2 years, but I heard that it'll be lengthened to 3 years because of a comparison study with Fosamax. I think that'll be great news for many many patients. Hopefully, they'll study more so it can be 5 years!

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.

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

I have the same question.  I'm just about to start my fourth month, and have experienced chest pressure, lethargy and nausea for the past 3 days.

Anybody else experience this?

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?

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.

PLEASE report this to the FDA MedWatch drugside effect reporting program so that it can be included in the data that is being accumulated on Forteo.  There are two deaths reported on this blog alone, but the drug company does not include either of them in their statistics.  1-800-FDA-1088

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'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 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 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.

The FDA has a side effect reporting process called MedWatch.  I have been told that if you do not report these cases directly to the FDA, they will not be included in warnings or disclosure to drug users in the future.  1-800-FDA-1088

Don't take steroids like cortisone and prednisone!  Deal with your pain some other way.  The steroids make your bones turn into soda crackers.

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.

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!

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.

oh wow, I just realized you're at Columbia. My doc consulted with someone at Columbia before taking a deep breath and agreeing to start me on Forteo. I owe someone there a big....thank you!

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

Be aware that Dr. Brown is selling a "plan" for bone health. 

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.