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DiscussionI am afraid of trying Tymlos and other drugs due to side effects
Osteoporosis & Bone Health | Last Active: Sep 27 2:28pm | Replies (151)Comment receiving replies
Replies to "I feel we have to agree to disagree or maybe we are talking at cross-purposes. I..."
(read to the end - there is a test I found for you).
We can when we get to an impasse. I'd rather come to an understanding before walking away. So much to be learned for others.
First, let me ask - we are just talking about these particular medications, yes?
I want be sure you don't think I mean all others or in general! Additionally, if we are talking about these specific meds, I am passing along what the UCSD Endocrinology dept. stated about my horrid Reclast reaction THEY SAID was because the medication was stimulating my bones to produce what it was not doing on its own. This makes sense to ME because like I said about my hep C meds did the same and I had a relative on life-saving bone marrow stimulation medication which also was painful and did the same. So yes, it definitely could mean that those who don't end up in the hospital "benefit far less" (did you see my test results? they are amazing!) but it also could mean that others don't have the particular "need." So my DEXA was all osteopenia then normal - and when they opened me up they found C5 fell apart in their hands! So, who's to say who is in particular need, what "benefit" may mean and who even knows what the reality is with our bones until falling or surgery.
Here is a case in point filed with the NIH which does claim adverse sudden events are reported in the FIRST infusion:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9754987/
I can tell you that my 25 years of severe lumbar back pain for which I take low dose percocet is changing! I've informed my doctor. There is one morning this week I skipped a dose. Today I skipped a dose in the afternoon. I am so tired of bone pain and the humiliation of taking opioids, I could die, so this is a big thing for me. Important things that SHOULD HAVE been implemented with my first dose but were entirely neglected! I should have been informed to drink water to hydrate and start Tylenol to keep fever/aches/pains down. (I did that with the Hep C med protocol.) We will discuss doing a lower dose when time to repeat. I get overmedicated quickly. These things aren't moderated for size - its one dose size fits all. They didn't check my D level and Calcium levels before infusion (but maybe they looked in my chart without me knowing) but I doubt it. I made them give me the tests, subsequently.
UCSD is a gold standard as a teaching hospital. The medicine has been around for a decade or more. I felt like I was a pain in the ass with my questioning and complaints. We didn't know if my problems stemmed from doing the infusion too close to a major double surgery.
Here's the thing - there are so many circumstances that could cause debilitating pain and difficulty. Can they be corrected so you can have a non-event infusion next time? The Endo team thinks my problems can be mitigated. I'm disappointed they didn't prepare me properly. Did you receive the preparation information?
I have 2 years on the Tymlos before I would go back for the 3 infusions and then be done. So I have breathing time. Oh - also - a lower dosage was suggested. but I am an overachiever and I will probably try once more at full dose UNLESS there are reports that lower dosage gets results.
I totally agree with your last sentence. I live by myself. It's all a hardship. I am only 67 and my bones needed replacement (two hips, lumbar and cervical.) THAT has all been suffering. So its an imperative for ME to stave off the ongoing destruction going on inside my body.
Finally, your sentence about hospitals, adverse reactions, and who benefits or doesn't isn't what I suggested. "Benefits," "suffering," "who" needs these medicines are not something I can speak to. Reclast is a "promise" of future independence, health, and less suffering. I've read all the literature I can get my hands on. I am rolling the dice. Its a risk either way.
OH HEY! if you read this far you are in luck! Here's a test that looked at the adverse reactions over first, second, third year!
"APRs were observed in 10.81% (152/1406) overall. The incidence rate of APR was 10.31, 1.01, and 0.55% after the first, second, and third infusions,..Most APRs occurred after the FIRST infusion, and the incidence decreased after the second and third infusions... An analysis by patient background showed that age < 65 years, no previous bisphosphonate use, and no concomitant use of active vitamin D were the risk factors for APR"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9978276/
@windyshores maybe you will find these articles helpful, too.