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Monday, November, 23, 2009
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Forteo: Do the Benefits Outweigh the Risks?

Neil Gonter, MD
Neil Gonter, MD
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Internist, Rheumatologist

Neil J. Gonter, M.D., is a board certified Internist and...

Neil Gonter, MD

Monday, November 13, 2006
View All of Neil Gonter, MD's Posts
Even though Forteo has been on the market for four years already, it is one of the newest medications approved by the FDA to treat osteoporosis. It is therefore understandable that patients are still seeking reassurance that the drug is safe and effective. From magazine articles to internet searc...
  1. Untitled Comment
    Pamela H. Flores
    Friday, November 24, 2006 at 10:55 PM
    Dear Dr. Gonter: Could I have permission to copy and paste your article on Forteo posted 11-13-06 on the HealthBoards? If I can do this I would assure you I would include proper Modern Language Assoc. rules for citations. I can't post the URL to this article on the HealthBoards because it's against their rules, so I am trying to get this info to forteo patients in the proper/legal manner. I would then have to get the HealthBoards to agree as well.
    Reply
  2. Untitled Comment
    Pamela H. Flores
    Friday, November 24, 2006 at 10:59 PM
    Dr. Gonter: I was wondering if you had any idea when it would be determined what the cause was for the patient that passed taking forteo (forteo or other health problem). At this time this has not been ascertained and wondered how long something like this would take? Thanks...
    Reply
  3. Untitled Comment
    Gordon Douglas
    Monday, February 12, 2007 at 08:17 AM
    Dr. Gonter, I am a 51 year old male who has been taking Forteo for 3 and 3/4 years. I had severe Osteoporosis that was attributed to immobility from hospitalizations from a motorcycle accident. The forteo took my Osteoporosis and turned it into Osteopenia. About year ago my blood calcium came back high and we switched to every three days versus every day injections.Now my BMD test came back -5.6 change and the doctor switched me to every other day injections.I then went to see a couple of other experts for their opinions.I was wondering on how long I should be taking Forteo. One is nationally known Dr. Michael Kleerekoper who told me to stop taking Forteo and had me start taking vitamin D-3. The other doctor is at the University of Michigan Dr. Roger Grekin who done a complete physical of me and asked me if I have ever had Prednisone shots. I told him that in mid 1996 an Orthopedic Surgeon gave me Celestone Injections into my left Femur to treat a chronic Fascitis. None of the other doctors including the Endocrinologists at Henry Ford Hospital ever asked me about cortocosteroids but couldn't figure out what was the cause. I was diagnosed with severe Osteoporosis in 1997 and none of the other doctors done a hands on physical of me. My question is, now that we know the cause ( corticosteroid induced Osteoporosis)what are my options? Is the disease treated different than when they thought it was from dissuse. Also since I have Barrets Esophagus is Fosamax out of the question? I know this letter has been long but I would appreciate your advice. Gordon Douglas
    Reply
  4. Forteo
    Anonymous
    Thursday, March 15, 2007 at 12:51 PM
    I took Forteo for 2 years and it didn't improve my osteoporosis
    Reply
    re: Forteo
    Nitra Peck
    Saturday, October 27, 2007 at 04:36 PM
    My Doctor wants me to take fortero because I have osterporosis and i don't know how good this would be for me. I have hypothroid and take synthroid.I also take calcium and 600 vitamin d. I take magnesiam and toprol and now I don't know if I should take fotero or start with the Boniva pill. Please let me know what you think
    Reply
    re: re: Forteo
    Angela Rainsberger
    Wednesday, April 15, 2009 at 12:08 PM

    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.

    Reply
    re: re: Forteo
    Miriam Klein
    Sunday, November 01, 2009 at 09:25 PM

    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?

    Reply
    re: Forteo
    Angela Rainsberger
    Wednesday, April 15, 2009 at 12:12 PM

    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.

    Reply
    re: Forteo
    Anonymous
    Saturday, August 29, 2009 at 11:58 AM

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

    Reply
  5. pricing
    Cora Alexander
    Tuesday, September 25, 2007 at 12:46 AM
    I am wondering the cost per month ?
    Reply
    re: pricing
    F. Ann
    Wednesday, March 18, 2009 at 04:00 PM

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

    Reply
    re: re: pricing
    F ANN
    Thursday, October 08, 2009 at 08:44 PM

    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?         

    Reply
    re: pricing
    F. Ann
    Saturday, March 21, 2009 at 08:18 PM

    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 ?

    Reply
    re: re: pricing
    Anonymous
    Monday, October 12, 2009 at 03:29 PM

    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

    Reply
  6. Forteo
    Linda Rubin
    Tuesday, September 25, 2007 at 04:32 PM
    Type is too small . . . can't read it.
    Reply
  7. Severe Side Effects!
    Cindy
    Sunday, January 06, 2008 at 10:23 AM
    My 85-year-old mother is experiencing severe side effects from Forteo. She started the daily injections around Aug 1, 2007. Four months later, she became extremely tired all the time, confused, had no appetite, was having brain seizures and fainting, weight loss and muscle weakness. Before this, she was perfectly healthy. They put her in the hospital for 10 days and ran every test imaginable...no signs of dementia or alzheimers, no sign of a stroke. I have been researching Forteo and I feel certain that she is experiencing side effects from that. I discovered that the elderly may be more sensitive to the effects of the drug. I also discovered that the side effects may not appear for months. At the end of her 10-day hospital stay, she needed 24-hour care as she was not able to even stand up, go to the bathroom, feed herself. This is a woman who was living by herself and completely independent 2 weeks prior! Now we have her placed in a nursing home. I desperately need to contact someone about these side effects to determine if they are permanent or temporary, and I need to know if there is anything we can do for her. I also would like to know if any other patient is having similar side effects. In my opinion, this drug has totally incapacitated my mother. She stopped taking Forteo three weeks ago. Please send me any information that you can. Thank you.  inayellowwood@yahoo.com
    Reply
    re: Severe Side Effects!
    Jeannette
    Saturday, December 13, 2008 at 03:06 PM
    Did your grandmother show signs of improvement after she stopped taking forteo.
    Reply
    re: re: Severe Side Effects!
    inayellowwood
    Saturday, December 13, 2008 at 03:19 PM

    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

     

    Reply
    re: re: re: Severe Side Effects!
    Jeannette
    Saturday, December 13, 2008 at 04:51 PM

    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.

    Reply
  8. Forteo Side Effects?
    connie ivey
    Saturday, February 09, 2008 at 12:20 PM
    Hello my name is Connie, I have been on Forteo for two weeks, did ok the first week then started having night sweats and severe pain in my spine. Worst pain ever experience. Started 10 min.s after taking shot,Called pharmsist and Doctor said forteo was not the cause. Next day 10 mins. after giving myself the shot same thing happen but didn't last as long. has anyone experience the same symptons?
    Reply
    re: Forteo Side Effects?
    Ronni
    Saturday, February 16, 2008 at 09:15 AM
    I have been taking forteo for 3 months and have severe hot flashes
    Reply
    re: Forteo Side Effects?
    Anonymous
    Sunday, May 11, 2008 at 04:01 PM

    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.  

    Reply
    re: re: Forteo Side Effects?
    Angela Rainsberger
    Wednesday, April 15, 2009 at 12:23 PM

    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.

    Reply
    re: Forteo Side Effects?
    Anonymous
    Friday, November 14, 2008 at 11:07 AM

    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.

    Reply
    re: Forteo Side Effects?
    Linda
    Sunday, August 02, 2009 at 08:44 PM

    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

    Reply
    Forteo Side Effects
    Susan
    Wednesday, September 16, 2009 at 05:50 PM

    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.

    Reply
    re: Forteo Side Effects
    CT
    Thursday, October 08, 2009 at 12:52 AM

    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.

    Reply
  9. Had to stop using Forteo
    Connie Ivey
    Thursday, February 14, 2008 at 10:54 AM

    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

    Reply
  10. bone cancer
    duane cooper
    Thursday, April 17, 2008 at 03:38 AM
    the lady that had the bone cancer.  Do you know where (which bone) it occured in when she was first diagnosed.  I have been on forteo for about 12 months and now have developed a lesion on my jawbone. i have been told that i may have osteonecrosis or possible cancer and i will be seeing an oral surgeon in 2 weeks. I also started haveing migrating muscular pain, low grade fever (especially at night), nights sweats to the point i have to change my sheets, no energy, and even my hair hurt! all of this started 4 weeks prior to the development of the jaw pain (march 1, 2008) The pain in my jaw is so uncomfortable that I am now taking Lortab 7.5 mg. I now have stopped the Forteo on my own accord. I am a 62 year male and am atesticular.  I am a retired nurse and have research this and coming up with few answers.  
    Reply
    re: bone cancer
    Angela Rainsberger
    Wednesday, March 04, 2009 at 01:03 AM

    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?

    Reply
  11. Positive response to Forteo
    yellowrose
    Thursday, May 15, 2008 at 01:46 AM

    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. Smile

    Reply
    re: Positive response to Forteo
    Patricia Coveny
    Thursday, July 10, 2008 at 08:06 AM

    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.

    Reply
    re: re: Positive response to Forteo
    yellowrose
    Wednesday, July 23, 2008 at 03:48 PM

    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.

     

    Reply
    re: re: Positive response to Forteo
    Ro
    Tuesday, February 24, 2009 at 09:09 AM

    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. 

    Reply
    re: re: re: Positive response to Forteo
    Jackie
    Thursday, July 02, 2009 at 02:41 PM

    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!!!

    Reply
    re: re: re: re: Positive response to Forteo
    J.Clare
    Sunday, October 25, 2009 at 12:24 AM

    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. 

    Reply
    re: re: Positive response to Forteo
    Ruth
    Saturday, April 11, 2009 at 09:20 PM

    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!

    Reply
    re: re: Positive response to Forteo
    Sue
    Thursday, July 30, 2009 at 09:28 PM

    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

    Reply
    re: re: Positive response to Forteo
    Jean
    Friday, September 04, 2009 at 10:51 PM

    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.

    Reply
    re: re: Positive response to Forteo
    Anonymous
    Monday, October 12, 2009 at 02:31 PM
    I am a female in my 70's. I started Forteo injections April, 20008 Had some side effects which got better as time went on. I still feel tired and have knee pain. However, my June, 2009 test came back -1.91, I was at -3.74 when I started. Fosamax and Boniva did not help me at all.
    Reply
    re: re: re: Positive response to Forteo
    Pam Flores
    Monday, October 12, 2009 at 02:56 PM

    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...

    Reply
    re: re: re: re: Positive response to Forteo
    Anonymous
    Monday, October 12, 2009 at 03:23 PM

    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

    Reply
    re: re: re: re: re: Positive response to Forteo
    Pam Flores
    Monday, October 12, 2009 at 03:54 PM

    Hi Angela, sorry I miss read your postFrown  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)

     

     

    Reply
    re: re: re: re: re: re: Positive response to Forteo
    Anonymous
    Monday, October 12, 2009 at 04:00 PM

    SmilePam,

    Thanks.  Good luck to you too.

    Angela

    Reply
    re: re: Positive response to Forteo
    Raven
    Sunday, November 08, 2009 at 04:39 PM

    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!

    Reply
    re: Positive response to Forteo
    Nancy Smith
    Tuesday, July 22, 2008 at 01:40 PM

    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???

    Reply
    re: re: Positive response to Forteo
    yellowrose
    Wednesday, July 23, 2008 at 04:00 PM

    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.

    Reply
    re: re: Positive response to Forteo
    Julie Knauf
    Thursday, October 23, 2008 at 01:19 PM

    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!

    Reply
    re: re: re: Positive response to Forteo
    Nancy Smith
    Thursday, October 23, 2008 at 03:24 PM

    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.

    Reply
    re: re: re: Positive response to Forteo
    Mary S
    Saturday, March 28, 2009 at 08:17 AM

    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

    Reply
  12. Positive response to Forteo/added comment
    yellowrose
    Thursday, May 15, 2008 at 04:37 AM

    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.

    Reply
  13. Untitled Comment
    Bob Smith
    Sunday, June 01, 2008 at 07:09 PM

    Thanks for these helpful comments.

    Reply
  14. Without Forteo my wife could not have had spine surgery
    davenavigator
    Monday, June 16, 2008 at 04:50 PM

    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!

    Reply
  15. Chest pain
    Milagros
    Saturday, June 28, 2008 at 03:00 PM

    i've been taking forteo for 4 months.is it normal to feel chest pain?

    Reply
    re: Chest pain
    jack
    Thursday, July 24, 2008 at 06:50 PM

    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?

    Reply
    re: Chest pain
    Concerned
    Tuesday, October 21, 2008 at 03:56 PM

    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?

    Reply
    re: Chest pain
    Concerned
    Tuesday, October 21, 2008 at 03:57 PM

    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?

    Reply
  16. side effects
    Pam Maxwell
    Saturday, June 28, 2008 at 05:14 PM

    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.

    Reply
  17. Bone caner
    Andrea
    Tuesday, July 01, 2008 at 07:05 AM

    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"

    Reply
    re: Bone caner
    Julie Knauf
    Thursday, October 23, 2008 at 01:11 PM

    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.

    Reply
    re: Bone caner
    karen
    Friday, January 16, 2009 at 06:45 PM

    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.

    Reply
    re: Bone caner
    Angela Rainsberger
    Wednesday, April 15, 2009 at 12:35 PM

    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

    Reply
    re: Bone caner
    mary
    Sunday, May 31, 2009 at 09:59 AM

    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.

    Reply
  18. New patient
    C Swisher
    Wednesday, July 30, 2008 at 12:15 AM

    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.

    Reply
    re: New patient
    Anonymous
    Monday, September 08, 2008 at 04:35 PM
    I am also a new patient that is suppose to start forteo. I am doing research as you have. I don't know what to do either. I was wondering if you have started the treatment? If so, how are you doing and do you have any side effects. I also need more comments from uses. Thanks
    Reply
    re: New patient
    Mary
    Sunday, June 21, 2009 at 05:32 PM

    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.

    Reply
    re: New patient
    gonesoon3
    Wednesday, September 02, 2009 at 07:47 AM

    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.

    Reply
    re: re: New patient
    Second time around
    Thursday, September 03, 2009 at 07:42 PM

    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.

    Reply
  19. withdraw symptoms-fosamax, before starting forteo
    robertpri
    Thursday, September 11, 2008 at 10:29 PM

    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.

    Reply
    re: withdraw symptoms-fosamax, before starting forteo
    Sam
    Thursday, October 16, 2008 at 10:39 PM

    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.

    Reply
  20. Forteo Side Effects
    kare3n
    Wednesday, September 17, 2008 at 10:43 AM

    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. 

    Reply
    re: Forteo Side Effects
    Theresa
    Wednesday, October 15, 2008 at 05:32 PM

    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.

    Reply
    re: Forteo Side Effects
    Julie Knauf
    Thursday, October 23, 2008 at 01:16 PM
    I heard that unless your doctor tells the salesman for Lilly, your complaint will not receive as much validation. Apparently, the company sends your doctor all of the follow-up requests and deals with the doctor, not the patient.
    Reply
    re: re: Forteo Side Effects
    Angela Rainsberger
    Wednesday, April 15, 2009 at 12:53 PM

    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

    Reply
    re: Forteo Side Effects
    Dave
    Wednesday, March 04, 2009 at 08:48 PM

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

    Reply
  21. Forteo...Good or Bad?
    Jo McMillen
    Tuesday, September 23, 2008 at 08:38 PM

    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).

    Reply
  22. Forteo
    Thadia George
    Thursday, September 25, 2008 at 06:29 PM

    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.

    Reply
    re: Forteo
    Sam
    Thursday, October 16, 2008 at 10:45 PM

    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.

    Reply
  23. Strontium instead of Forteo?
    Marielle
    Saturday, November 15, 2008 at 10:18 PM

    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.

    Reply
    re: Strontium instead of Forteo?
    Donna
    Wednesday, January 14, 2009 at 03:15 PM

    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!

    Reply
  24. PPI's, calcium absorption and Osteoporosis.
    Sailor
    Sunday, November 16, 2008 at 05:24 PM

    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.

    Reply
  25. Forteo
    STG
    Monday, April 20, 2009 at 10:36 AM

    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.

    Reply
    re: Forteo
    Jackie
    Thursday, July 02, 2009 at 02:55 PM

    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.

    Reply
    re: re: Forteo
    STG
    Thursday, July 02, 2009 at 03:40 PM

    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.

    Reply
    re: re: re: Forteo
    Jackie
    Thursday, July 02, 2009 at 04:10 PM

    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.

    Reply
  26. Forteo Too Aggressive??
    Anonymous
    Thursday, April 23, 2009 at 04:08 PM

    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?

    Reply
  27. I believe it does!
    Anonymous
    Thursday, June 04, 2009 at 02:16 PM

    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.

    Reply
  28. I benefitted greatly from Forteo with no adverse effects
    Pam
    Thursday, June 04, 2009 at 02:31 PM

    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.

     

     

    Reply
    re: I benefitted greatly from Forteo with no adverse effects
    Pam (again)
    Thursday, June 04, 2009 at 02:42 PM

    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!

    Reply
  29. 24 year old with osteoporosis
    nlarcomb
    Thursday, June 04, 2009 at 10:16 PM

    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

    Reply
  30. Severe leg fracture post 13 months on Forteo
    Anonymous
    Thursday, July 02, 2009 at 05:01 PM

    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!

    Reply
    re: Severe leg fracture post 13 months on Forteo
    Doctor Lani
    Sunday, July 26, 2009 at 06:52 PM

    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

     

     

    Reply
  31. http://www.betterbones.com/osteoporosis/forteo-bonedrug.aspx
    Jacqueline
    Friday, July 31, 2009 at 12:26 AM

    Dr. Susan Brown did a wonderful job breaking down forteo's risk/benefit analysis for the common person to understand. Here's the link -

    Forteo — is this bone drug too good to be true?

    Reply
    re: http://www.betterbones.com/osteoporosis/forteo-bonedrug.aspx
    Anonymous
    Monday, August 31, 2009 at 02:36 PM

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

    Reply
  32. severe side effects from Forteo
    Pam
    Wednesday, August 12, 2009 at 01:45 PM

    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.

    Reply
    re: severe side effects from Forteo
    mustang
    Tuesday, October 20, 2009 at 02:01 PM

    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.

    Reply
  33. forteo
    Marti
    Friday, September 04, 2009 at 01:58 AM

    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

    Reply
  34. forteo
    Marti
    Friday, September 04, 2009 at 01:58 AM

    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

    Reply
  35. forteo
    Carleen
    Tuesday, September 08, 2009 at 09:06 PM

    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.

    Reply
  36. 2nd 28 days of forto.
    Anonymous
    Wednesday, September 09, 2009 at 11:34 PM

    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?

    Reply
  37. Untitled Comment
    praisejmj
    Sunday, October 04, 2009 at 02:21 PM

    I was told that I have to go on Forteo for thin bones and factures. But I'm scared because of all the side effects like rapid heart beat, nausea and joint aches. I suffer from alot of pain already from my fractures and spine.

    Does anyone have bad side effects from this drug?

    Reply
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