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one case, but what of the uncounted like dingus who can find a doctor who can recognize a reaction to Reclast even when told by the person having the reaction.
We only get this much information because the patient was at a teaching hospital with fellows desperate to publish.
I was in a bit of a panic when you headed off for your Reclast infusion because of the connection to autoimmune.
Even knowing that 4mg is as effective as 5 the dosage remains at 5mg.
We all need your doctors.
Replies to "one case, but what of the uncounted like dingus who can find a doctor who can..."
@gently I am moving and making so many typos! I just wanted to say that was one case which means it won't affect the course of treatment for any of us unfortunately. I think pharmacists know more about side effects sometimes.
Not sure what actual support (besides gee we are sorry) anyone can offer. There is on antidote. Physical therapy? Pain meds? Immune system testing?
@gently Thanks for that paper. Your comment about the patient being at a teaching hospital in the just the right circumstances may be the only reason we have even this one bit of formal recognition of a serious problem with Reclast. I even wonder if they had not found at least one marker (the ESR) that they would have even produced the paper. There are many conditions where it is very difficult to find any blood marker indicating the condition. For my food and chemical sensitivities there were not any markers. I guess most researchers don't want to produce a paper saying sorry reviewers we know it happens but it's just a mystery and we cannot prove it.
Oh, one thing about the paper is that they say this is so rare as they could find only two other similar reports. Well all one has to do is look at osteoporosis forums to see that this is happening all the time. What a strange disconnect between doctors/academia/research and us folks who have osteoporosis.
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Yes 1 mg with one hour IV hydration and infusion of 1 mg over one hour with tylenol and I still had a fever for 5 days. I am quite sure spinal pain is worse. Some pins and needles in hands and feet. I am having another 1 mg next week and then meeting with doc about what to do next. I know he wants me on 2mg or 3mg in three months after the last 1 mg which brings me to 4-5mg for the year but I am going to discuss stopping if I have had enough to "lock in gains."
There is not long term plan for any of us as yet, at least not one approved in practice. If I could take a drug holiday I would do Tymlos after awhile. Another option if alternating Evenity and Reclast. I figure I have 15-20 years left. I want to see a clear plan for that but I doubt anyone knows.
My scores in spring 2022 after 18 months on Tymlos were -2.5 spine, -2.9 hip and -3.7 for femur neck as I remember. Dramatic improvements. I get my next DEXA this April. MY CTX is pretty low.