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Monday, September 28, 2009 Vivianna asks

Q: Has anyone with fibromyalgia ever have reclast bone infusions

I have fibromyalgia along with osteoporosis. My doctor recommended  that I have the reclast infusion because I had quite a bit of bone loss. I never could take the standard meds that you would take for this condition because of very severe body pain.

I deeply regret having that bone infusion. It has been three months since I had it.

I have never been in so much pain in my life. My fibromyalgia is at its worst. I can barely move when I wake up in the morning. It hurts to move. I can barely function until noon time. I went to see my doctor the second day after the infusion because of everything I just stated. She told me that it should be better in a few days and that some people do have that reaction. She did some blood test to see if my kidneys were filtering  it correctly. They called me  with the results and said the kidneys were OK and also that the pain might last as long as seven days due to the effect of the reclast infusion.

Well, its been three months and nothing has changed. I don't know what else to do.

My life has been hell and I wish that I never ,never let them talk me into this bone infusion. They will never admit that this is the result of the infusion , but you will never convince me otherwise. I was tolerating my fibro OK up until this infusion. I use to have good days and bad days, but never anything like this. I would tell anyone out there that has fibromyalgia to beware. 

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Answers (3)
Pam Flores, Health Guide
9/28/09 6:51pm

Hi Vivianna, welcome and thanks for your question.  I'm so sorry you are having so much pain from your FM.  One of the common side effects of Reclast is bone/muscle and joint pain, which the drug company lists on the package insert.  I wish your Dr. would have discussed this with you and hope your pain subsides soon.

 

Can you ask your Dr. if there is some other medication you could take that doesn't have this type of side effect when the year is up?

 

There are other options, but I don't know if you'd be a candidate for them.  We're hoping that Denosumab will be approved by the FDA in Oct/Nov which is a twice yearly injection and it's not a bisphosphonate like Reclast.  There's also Forteo, but again the Dr. would have to recommend it and see if you qualify for it.

 

Good luck and I hope any members with this reaction will respond to your post.  Hang in there!!Smile

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12/29/10 8:52pm

Thank you for your answer, Vivianna.  I also have fibromyalgia and now osteoporosis and could not tolerate the oral meds because they made me sick from one dose to the next.  I have contemplated the yearly Reclast, thinking I could tolerate the pain for one week out of a year, but your input has saved me from a lot of misery.  How long did it take for the Reclast induced pain to resolve?  I sure hope it did.  Fibromyalgia is enough to cope with.  Now, I'm wondering if anyone with fibromyalgia has tried the Forteo injections.

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3/ 3/11 9:12am

Don't do reclast if you have fibromyalgia.  I have neve experienced so much body pain, headache and dizziness in my life.  Had to go to emergency to get the pain stopeed

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By Vivianna— Last Modified: 03/03/11, First Published: 09/28/09