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Bisphosphonates or Not? Both No Win
Osteoporosis & Bone Health | Last Active: Jan 30, 2022 | Replies (92)Comment receiving replies
Hello JK, thx for replying. You are the first and I am surprised because I received possibly 40 to 50 emails a day from the Neurology Group. They may be larger than this group?
You sound like me in that you have had some side effects from prior medication. I do not know if they were serious side effects or not? For example, my demodifying anti Rheumatic drug (DMARD) harmed my kidneys, prednisone cause my osteoporosis, cataracts and adrenal gland disease, 20 years of Plaquenil use cause some tissue death in my retina and the list goes on.
With the bisphosphonates, not so serious side effects could still be debilitating such as bone/joint and muscle pain, flu-like symptoms, fatigue weakness excetera. All of which I already have and live with so if it were worse I don't see I could get out of bed at all were I to have those.
Also, they can go the duration of the medication, which depending on which drug, can be 3, 6 or 12 months and then I believe you must start again.
It is a very hard decision because the Sirius and not serious side effects which again are supposed to be rare , except for the flu like symptoms for maybe the first 3 days or so and then resolved.
You don't mention if you have broken any bones have had a prior bone density study or your age.
Please keep us up-to-date on what's going on with you and know that I will be praying for you and your situation. It's really, really tough isn't it?
I still don't know what to do and my husband and I have been talking about over extensively. I have the sweetest most kind and patient endocrinologist on the planet so I am exceedingly blessed and deeply grateful! I wish the same for you. She has provided me the latest up-to-date most reliable studies and clinical trials on bisphosphonates but now that I read through them with my husband I wish I wouldn't have. I just don't know, there are such long list of possible unwanted or serious side effects on any drug you can take, even a Tylenol.
Take good care of yourself and I wish for you peace for your soul. Many blessings, Sunny flower
PS: if you have any kind of poor kidney function, that will eliminate you from at least one of the the options.
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Thanks, @sunnyflower The side-effects I have had, other than osteoporosis from prednisone, have not been permanent so far, I think. I say I think because I have been a lot of trouble with lightheadedness and terrible fluid retention recently with no apparent reason. I just discovered this week that these side-effects can be caused by a gel I am using to ease the pain of my hip bursitis. They are rare side-effects so that's probably why no one picked up on it. I can't be absolutely certain yet that is the cause of my problems but I strongly suspect it is at least the cause of my lightheadedness because I was away for a few weeks and didn't use the gel and was not lightheaded. I am hoping that the fluid retention in my legs will start to decrease, I know that can take a few weeks. I am hoping that there was no permanent damage to my heart though. That could be scary.
The other side-effects I have had from drugs have been just while taking them, with no permanent damage, but the osteoporosis can cause some very serious problems. My endocrinologist (actually I have seen two, plus my PCP) has assured me that the odds of having a problem are exceedingly low, like 1 in 10,000, so I was planning to risk it until I realized just how many pharmaceuticals have caused me problems. I need to do more research to see if any of these osteoporosis drugs absolutely do not cause any severe problems.
I did have a fracture, in July 2019. It was fortunately a minimally displaced trochanteric femur fracture, but even though it was minimal it took a very long time to feel good again. That was what led me to ask my PCP if I was due for a DEXA. Turned out I was way overdue. When I had the DEXA last September it showed somewhat advanced osteoporosis.
As I mentioned, I am having a DEXA in October and seeing both endocrinologists in November. I have no idea if Medicare will pay for all of the appointments but even if they don't I consider it to be worth it to get opinions from two highly respected doctors -- this is a pretty big decision when all is considered.
JK