Does anyone have a solution to help manage Reclast side effects?
Does anyone have a solution to combat Reclast side effects. I had the infusion a year and a half ago and the side effects started shortly after I had the infusion. I still have weak legs, swelling in feet, pain in bones, dizziness (serious dizziness), cold sweats, tired all the time and nervous twitching in bones. Any suggestions?
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findtheanswer, I'm not medical but agree with your assessment that your best option is Forteo (or Tymlos). A steroid would not make any sense for you. It is a medication that can help with painful conditions after Reclast, which you have not taken, will not take.
And while a 5 day steroid could briefly delay healing after surgery the bigger problem is that it could increase the risk of infection.
The use of these anabolics is not recommended after romosozumab because they don't reduce CTX and will increase CTX after some months of use. There is also bit of rebound in CTX recognized after romo use.
You were really smart recognizing in advance that you did not want to be sequenced out of Forteo. Your expression should have been recognized and honored. I suspect that there wasn't knowledge of the sequence issue rather than dishonoring. That is that you were possibly better informed that the physician, though it may be that your bones were weak enough to require the immediate bone bulking possible from no medication other than romosozumab.
It may be that your physician hasn't the choice of whether of not to follow protocol because they are restricted by the institution they work for, or they may just see a bigger risk for you in taking an anabolic after romosozumab because of the two confounding CTX factors.
You may be able to find a physician who will prescribe Forteo. I don't think anyone would prescribe after hearing the whole story of a previous doctor's refusal. And it is very hard work to go to doctor after doctor while you are recovering from surgery.
A default option might be low dose zoledronate followed by Forteo.
I feel the terror in your posts and am sorry you're in this position, especially after so intelligently figuring the situation in advance.
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I am so sorry that you are going through so much.
Great Bones is a book by Keith McCormick. He is a chiropractor not an MD. He and his book are mentioned by a number of members here as a good source of information about Osteoporosis.
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1 Reaction@gravity3 yes, beware of some of the books…some are pushing their own products…McCormick has some good info, but there are other sources…like Mayo Clinic, Cleveland Clinic, and NIH….I have gotten a lot of useful info right here from other patients, and the info is monitored carefully.
@findtheanswersdn my endro is local here in Vermont. Of course there is always the possibility of some kind of side effects! The side effects I am experiencing he says are not from the infusion, sends me to Rheumatology, who sends me to Neurologist, who wants me to go to an orthopedic and the list goes on! I started on this merry-go- round and as doing so, I thought long and hard; “ This needs to stop” and the only person that can do that is me! It has been 19 months since my first and last infusion! I go bi-weekly to physical therapy and I am not going to be tossed around any longer. Prior to the infusion I suffered from Ankolosing Spondylitis and pain was manageable. With this infusion I don’t know what to expect from one day to the next. With that being said, it is getting a little bit better or I am learning to tolerate the level of pain and I do not need more. Good luck to you! I do feel the FDA should pull this drug off the market without further research!
@findtheanswersdn my endocrinologist is in Burlington Vermont. He never mentioned anything about the side effects and does not believe that the Reclast caused my shoulder, left leg pain that started the day after infusion, along with nausea and groin burning. The later two have got some better!
@nycmusic
Yes.
@findtheanswersdn
I am so sorry that you have suffered through all these issues. Dr. Kieth McCormick is a Chiropractor who also had Osteoporosis. Here is a link to his website: https://greatbonesconsulting.com/.
He does consultations for $395 He does not take insurance.
Best wishes in your bone and and healing journey!
Doctors will tell you it’s not the reclast they are full of it. It is the reclast. Ine has lasted 6 months. I was hospitalized twice on the beginning. A good acupuncturist helped e. Asia. I still have pain, but not bad. It grudually wears off.
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