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Windyshores, We're probably on the same wave length. But when I call a doctor and say I think I'm having side effects from Reclast, I think they should try to find out if it is from the Reclast. That would go right along with your belief that there is research being done along the way. None of them suggested I come in for an exam. Can't do research if you don't examine the patients who are having problems with the drug.
Replies to "Windyshores, We're probably on the same wave length. But when I call a doctor and say..."
ikhender, I hope this message gets to you. I'm replying to myself because I don't know how to reach someone if there is no recent post from them. In one of your posts, I think it was in September, you sent an article from the publication "Cureus" entitled "A Rare Presentation of Zoledronate-Induced Systemic Inflammatory Response." It's an excellent article about an 82 year old that had severe side effects from Reclast. I made a copy of the article, and refer back to it often. I tried to find your post that had the link with it, but couldn't find it. I wonder if you could post it again. I want everyone to see how the doctors helped this woman, and all the tests that are available to determine if the side effects are from the Relast. Several people seem to think that doctors cannot come up with a definitive diagnosis. The tools are there. Just have to find a doctor willing to use them.
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@dingus I agree we are probably on the same wave length. I don't think doctors have any way to know if a side effect is from Reclast other than googling just as we do (and some of them don't do that!). An exam won't answer that either. I am fortunate to have a doctor who cooperates with my sensitivities but even he said "I have never heard of that" when I described a side effect. I think that doctors' tendency is to wish and hope that a drug will be tolerated (and work) out of concern for the health issue and view it as up to us to decide if it is not possible to continue. My doc actually said that: "It is up to you to decide if the side effect is so bad that you need to stop."
I am having a neuro issue right now involving facial pain and numbness. It could be autoimmune (I have two autoimmune disorders), it could be an acoustic neuroma, it could be from my neck stenosis, it could be from paraneoplastic syndrome (I had that before with cancer and it might signal more) and yes it could be from Reclast.
So many of us have complex situations. I am so overwhelmed trying to figure out which doctor to help- so far none have- so I am not a Pollyanna about limitations of doctors! I am meeting with PCP about a strategy. Perhaps we all need to evaluate each side effect one by one and by process of elimination, get to Reclast as the culprit. I don't see how any endo can say that without us going to a lot of other specialists unfortunately.