forteo and bone pain

zoespil2 Community Member June 08, 2008
  • Hello,

    I started Forteo August 2007, my diagnosis after a bone biopsy showed it is the only drug that will work for my condition.  In November I really had severe bone pain - the shooting kind I hear some of you describe. It was becoming almost constant and not tolerable even with pain medication.   On December 6, upon visiting my doctor, we decided to take a "holiday" from the drug, especially with the holidays coming up.  I think it took about 4 weeks before I noticed , hey, I'm not having that shooting pain.  I then resumed using it Feb. 1, 2008.  Instead of injecting between 7-9 pm as my doctor had suggested, have been injecting early afternoon, thinking maybe if I walk and move around rather than closer to bedtime it would be better.  So here it is June 7 and I have not had the severe pain of the first round - have had a little. I  am fortunate to have  a prescription for ty.#3  and tramadol for back pain, so maybe  would be  in some worse pain if not for that.  However I  cannot stress how severe it was  last fall and the  description  of the deep shooting pain  is  accurate. 

    The reason I found your site is because I googled "bone pain and fever" - I have been running a low grade fever for a couple months and investigating other causes - but this is interesting that some of you have the fever.  I really want to stick out the treatment as long as possible, I am 53 and have had fractures, so need to do it. Especially since the other options won't work. 

    There is evidence in the research on Forteo that intermitent  use can still be beneficial, either one month on, one off or 3 on 3 off. 

    I would love to correspond with anyone on these matters, thank you

13 Comments
  • kathybeth
    Feb. 03, 2009

    I have been on forteo for 2 months now. I have started having pain in both my knees, legs and lower back. My doctor does not agree that forteo is causing this. I live with chronic pain on a daily basis and have for several years. I know the difference in what is now new pain since I started the treatment. My T score is -4.4. I have been on other treatments...

    RHMLucky777

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    I have been on forteo for 2 months now. I have started having pain in both my knees, legs and lower back. My doctor does not agree that forteo is causing this. I live with chronic pain on a daily basis and have for several years. I know the difference in what is now new pain since I started the treatment. My T score is -4.4. I have been on other treatments but had to discontinue due to problems. I see so many posts about the osteoperosis drugs causing problems but most doctors will not admit that the drug is causing it. I can only hope for the best with this one.

  • trishr46
    Aug. 25, 2008

    I have been totally the opposite.  The very day I started forteo, my pain lessened.  I fell and did some good damage to my legs and lower back due to fractures.  But I also noticed fractures nearly everywhere in my body.  I got scared.  The doctor I am seeing now put me on Forteo and it has taken care of the smaller areas.  That...

    RHMLucky777

    Read More

    I have been totally the opposite.  The very day I started forteo, my pain lessened.  I fell and did some good damage to my legs and lower back due to fractures.  But I also noticed fractures nearly everywhere in my body.  I got scared.  The doctor I am seeing now put me on Forteo and it has taken care of the smaller areas.  That has helped me so much.  The larger fractures are trying to improve but it will take more time.  I have realized that it is a rotating thing.  We get fractures every day and Forteo heals what it can every day.  But it's the worse places, usually the spine, the lower back and the hips (femar bones) that causes the most pain.  They are harder to heal.  But at least I got relief from my arms, feet, head and other smaller places.  ANd I do not miss a single shot.  Not on your life!  THat is what they told me when I started this and I am sticking to it. 

     

    When I finish the Forteo, I'll be on the once a year infusions.  So please all of you pray big for me.  I will for you too!

    • Anonymous
      Scared but Hopeful
      Nov. 21, 2013

      Trish - thanks for your post.  You provide optimism for me and that's half the battle, I think.  All my docs want me to start Forteo and I have been very resistent and frightened of it and its side effects.  I sustained a fall (out of bed - no less) this summer and fractured my T-9.  Healing has be very bad and the pain unrelenting and still...

      RHMLucky777

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      Trish - thanks for your post.  You provide optimism for me and that's half the battle, I think.  All my docs want me to start Forteo and I have been very resistent and frightened of it and its side effects.  I sustained a fall (out of bed - no less) this summer and fractured my T-9.  Healing has be very bad and the pain unrelenting and still with me 4 months later.  Now I am told that I really need the Forteo and should start ASAP.  I think I have to now.  I am so hopeful that in addition to the bone building benefits, I will realize some pain control from it.  Any thoughts on that?  There are so many differences of opinion on the pain question.  Any answers and experiences on these questions really appreciated.  Thanks, Scared but Hopeful.

  • Anonymous
    sue smith
    Aug. 20, 2008

    I was on Forteo for 2 months and stopped.  I had depression and could sleep 24 hours/day.  I still have the pains in my legs, but feel so much better.  I'm happy to read you can go on and off forteo.  Maybe I will restart next week.  I also always felt like I had a cold, and it was zapping my energy.  I'm much happier off the medicine....

    RHMLucky777

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    I was on Forteo for 2 months and stopped.  I had depression and could sleep 24 hours/day.  I still have the pains in my legs, but feel so much better.  I'm happy to read you can go on and off forteo.  Maybe I will restart next week.  I also always felt like I had a cold, and it was zapping my energy.  I'm much happier off the medicine.

    • Anonymous
      Anonymous
      Aug. 20, 2008

      Hi Sue,

      I just re-started the forteo, so hard to tell what is going to happen.  I think it did increase my hot flashes so will "look foward" to that again"!  I still had some off of it, but not so severe.   The bone pain is the worst.  I really believe you and I think the drug is new enough they just don't know what it will do as far as...

      RHMLucky777

      Read More

      Hi Sue,

      I just re-started the forteo, so hard to tell what is going to happen.  I think it did increase my hot flashes so will "look foward" to that again"!  I still had some off of it, but not so severe.   The bone pain is the worst.  I really believe you and I think the drug is new enough they just don't know what it will do as far as side effects and each person is different.  It does work though, and I seem to have no other option, so am going to try to tough it out.  When I have been off, I keep getting the product,  as my insurance only approved it for the 2 year period, and it won't expire -do you know what I mean?  That would not be a problem if your insurance covers injectables. 

      We are moving our son back to college today.  I will get back on my computer again when things settle down - so will try to write more.  Thank you for writing to me, tracy

    • Anonymous
      Sue
      Aug. 20, 2008

      Hi, I don't know your name, but I hope your trip to take your child to college was a good one.  Wish those days were back for me!!

       

      Thank you for responding.  I am going to my doctor Friday to see what she suggests.  I'm thinking of NOT taking any other meds, as I am distrustful of all of them.  I may just return to the Forteo soon. ...

      RHMLucky777

      Read More

      Hi, I don't know your name, but I hope your trip to take your child to college was a good one.  Wish those days were back for me!!

       

      Thank you for responding.  I am going to my doctor Friday to see what she suggests.  I'm thinking of NOT taking any other meds, as I am distrustful of all of them.  I may just return to the Forteo soon. 

       

      Take care,

      Sue

  • Anonymous
    Kip
    Jul. 20, 2008
    I have Ra and it has been basically dormant, I also have osteporosis and been taking fosamax,,no help just started forteo and now seem to have more joint pain, Can this drug effect RA?
  • HBlitz
    Jun. 20, 2008

    Hi, I'm 57 and was diagnosed at 52.  Doc is not sure what is causing it.  I'd asked about a bone biopsy but she was not 'entusiatic' about it.  I'm curious as to what dx the bone biopsy came up with.  Hope your feeling well.  I'm a bit frightened of the forteo but it sounds like the only thing that really works.  Also, may I ask...

    RHMLucky777

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    Hi, I'm 57 and was diagnosed at 52.  Doc is not sure what is causing it.  I'd asked about a bone biopsy but she was not 'entusiatic' about it.  I'm curious as to what dx the bone biopsy came up with.  Hope your feeling well.  I'm a bit frightened of the forteo but it sounds like the only thing that really works.  Also, may I ask what your t score is/was?

     

    Thank

    • zoespil2
      Jun. 21, 2008

      Hi,

      I just wanted to let you know I got your message.  I will get out my my records and tell you what the diagnosis was.  My doctor, in Denver, sent the biopsy to a doctor at Creighton in Omaha, there are only a few  docs who conduct the pathology.  They are not sure why mine is so bad either, but it is and Forteo was the only choice. ...

      RHMLucky777

      Read More

      Hi,

      I just wanted to let you know I got your message.  I will get out my my records and tell you what the diagnosis was.  My doctor, in Denver, sent the biopsy to a doctor at Creighton in Omaha, there are only a few  docs who conduct the pathology.  They are not sure why mine is so bad either, but it is and Forteo was the only choice.  I will try to get that information to you, it might help with your doctor.  thanks, tracy

    • HBlitz
      Jun. 21, 2008

      Thank you!  How are you doing on the Forteo now?   Do you know yet if it is working?  So sorry for all the questions, I'm trying to stay out of panic mode!

    • zoespil2
      Jun. 21, 2008

      Hi,

      My doctor said last month that my bones should be 75% better than they were when I started August 2007.  I did have to take about 6 weeks off around the holidays because of the bone pain.  He would like to do another bone biopsy to assess things, however I'm not sure I want to go through it again.  My dexa scan numbers were -2, does that...

      RHMLucky777

      Read More

      Hi,

      My doctor said last month that my bones should be 75% better than they were when I started August 2007.  I did have to take about 6 weeks off around the holidays because of the bone pain.  He would like to do another bone biopsy to assess things, however I'm not sure I want to go through it again.  My dexa scan numbers were -2, does that sound right?  I had severe osteopenia to start out with, then in doing blood work, my N-telo.creat, ratio was high, indicating something was going on and thus the bone biopsy.  

      This is what my doc wrote in a letter to my insurance company ( I had to appeal for the Forteo)

      "I performed a quantitative double tetracycline-labeled bone biopsy for histomorphometry which was read by Dr. Robert Recker at the Bone metabolism Program at Creighton University.  this showed a decreased bone formation rate and decreased mineralized surface, compatible with very low bone remodeling.  these results make her a very strong candidate for the anabolic agent Forteo, which stimulates bone formation.  Her condition is a contraindication for the use of bisphosphonates, since she has a low bone formation state."  He further refers to me as having "severe osteoporosis." 

      The Creighton doctor wrote  "...the bone formation rates were all decresed and the mineralization lag time was quite prolonged when measured only on double labels.  The bone formation rates were all depressed and the activation frequency was quite low at .01 per year.  There was only one area of trabecular double label seen in the entire specimen.  Impression:  osteoporosis with reduced bone remodeling. "  He wrote a lot of other technical stuff, that is the gist of it.   The biopsy was important for me though as you can see he says  the bisphosphonates would not be appropriate for my condition. 

      I think the forteo is increasing my hot flashes, which I had not had for several months before starting last year, maybe some low grade fever and the bone pain.  The bone pain has not bothered me  as much this past few months.  I had changed the injection to earlier in the day, perhaps that helped.  We are going on a trip next week, by plane and I made a decision to stop the injections for about a month and see if the hot flashes decrease.  I have traveled with it and there is no problem, but it is time for another holiday for me right now, and in doing so I feel somewhat empowered and the drug isn't controlling me.  It was really funny, shortly after I started Forteo, we had to travel out of state, I was showing the security guy the drug, etc. and he told me to "take a deep breath", he said "we aren't mean", I was pretty nervous I guess trying to get through with my syringe and needles!!

      Oh, very importantly, the blood test that was elevated is way down, and my doctor feels that is a very good indicator that it is working.  I try to look at the side effects in the big picture of it is a two year treatment - not forever.  We do not know what I will follow up with,  maybe there will be something new by then. 

      If you think of any other questions about the biopsy or anything , let me know, I will try to answer. 

    • HBlitz
      Jun. 23, 2008

      Hi,

          Yes, it definately makes sense.  If you're not making any bone, there's nothing for the bisphosphonates to keep from dissolving  I mentioned this to my doc but she says that I am producing bone.  It sounds like the Forteo is working for you..  I'd love to have .2.  I'm barely holding on to -2.5's.   ...

      RHMLucky777

      Read More

      Hi,

          Yes, it definately makes sense.  If you're not making any bone, there's nothing for the bisphosphonates to keep from dissolving  I mentioned this to my doc but she says that I am producing bone.  It sounds like the Forteo is working for you..  I'd love to have .2.  I'm barely holding on to -2.5's.    I have an additional - serious issue - that I hadn't mentioned re: the Forteo.  4 years ago I had a chondrosarcoma removed from my let.  For this reason my doctor says I'm not a candidate for Forteo.  However, if my bones are going to continue to dissolve I sometimes wonder if it might be worth the risk.  My curiousity about your numbers is based on me not really having a clear idea as to how bad my situation really is.. and if the Forteo is worth the potential risk Thanks for the communication, it helps.  ANd congratulations on your numbers.  I think at -2 you only have osteopenia!

       

      Helene

       

      Thanks,

       

      Helene

       

  • Maria Gifford
    Jun. 09, 2008

    Hello. Welcome to our community. I'm glad you've found us.

     

    As you know, the pain and fever you experience are common side effects of Forteo, and many people share them with you. However, it's interesting that the change you made in the time of day of your injection has seemed to make a difference in the amount of bone pain you have. Please keep...

    RHMLucky777

    Read More

    Hello. Welcome to our community. I'm glad you've found us.

     

    As you know, the pain and fever you experience are common side effects of Forteo, and many people share them with you. However, it's interesting that the change you made in the time of day of your injection has seemed to make a difference in the amount of bone pain you have. Please keep us posted on how this continues for you.

     

    Here's a helpful SharePost by our site expert, Dr. Neil Gonter:

     

    Forteo: Do the Benefits Outweigh the Risks?

    http://www.healthcentral.com/osteoporosis/c/73/2677/forteo-risks/

     

    Thank you for offering to correspond with other community members. Our site is a great place to connect and share.

     

    Write again soon. We'd love to hear more from you.

     

    Best,

    Maria

     

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