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I thank everyone who responded and especially for the suggestions as to websites or articles to read. In addition to contacting people with Celiac, I reached out to non-Celiac friends who have osteopenia.
My original question - Have people who have stopped Prolia experienced increased bone fractures? In addition, did medical providers caution it was a “forever" medication regimen?
The Prolia pamphlet given to me was printed in May 2019. It contains 2 pages of “Important Safety information” i.e. the list of everything that may go wrong. Specific to stopping Prolia is the following: “Increased risk of broken bones, including broken bones in the spine, after stopping Prolia. After your treatment with Prolia is stopped, your risk for breaking bones, including bones in your spine, is increased. Your risk for having more than 1 broken bone in your spine is increased if you have already had a broken bone in your spine.” It goes on to say that if you stop Prolia, speak with your physician about other medicines. The pamphlet also states while using Prolia, “Some people developed unusual fractures in their thigh bone.”
In general, the Listserv respondents and my friends who have actually used Prolia found their bone density increased while using it although a few people said there was no change. No one reported either being warned about or actually experiencing fractures after stopping Prolia. At least one person was told her bones would return to where they were “before” she began the meds. Some were told they could only use it a limited time (2 to 5 years being the span.)
A few people voiced skepticism of any of the osteoporosis medications and at least one person advocated a holist food approach in lieu of osteo meds. Another individual learned it wasn’t his Celiac causing osteoporosis but it was FODMAP sugars and once he changed his diet, his osteoporosis improved.
Separate from the listserv and personal friends, I skimmed the past several years of blog comments on two different blogs - one connected to a major US medical center site. That was discouraging as the negative comments about Prolia’s side effects far outweighed the positive. However the few positive responses were - "no side effects" and "improved bone density". But I believe people tend to post when they are unhappy so I am noting, but ignoring, theses blogs as I make my decision.
Among the most useful sources for me : WebMD (June 2, 2010 report) about FDA approval of Prolia and a "The National Women’s Health Network" article (Feb. 28, 2017) https://nwhn.org › prolia-safe-treatment-option-osteoporosis - both suggested by Listserv respondents.
I did not mention in my original post that I have severe Osteoporosis - that has gradually worsened since being simultaneously diagnosed with Celiac and osteopenia 15 years ago. I have since used, with varied success, five osteoporosis meds. It’s been Reclast the past 7 years and it no longer adequately stabilizes my bone density And this is something I saw in responses - folks using a variety of meds with some working longer than others. The longer diagnosed with osteoporosis, the greater the number of drugs a person has been prescribed.
I did not mention in my initial query that in addition to my recent DEXA scan, I also had a "Trabecular Bone Score" (TBS) and several blood tests to include a "bone turnover marker". This combination provided greater detail as to the actual “quality and strength” of my bones.
I spoke with my medical provider yesterday to confirm I heard correctly - for me Prolia is the "forever" treatment but if I suffer significant side effects (which I do not anticipate), they would put me back on annual Reclast. My providers (who do research) are an osteoporosis focused practice and have used Prolia for a number of years having participated in the initial trials. The answer to my question yesterday as to whether they continue a relationship with Amgen (the pharmaceutical company) was "No" but perhaps again in the future. The only new osteoporosis drug is "Evenity" - approved by the FDA in April, but it is not recommended for me.
I feel good about all I have learned this past week and will make my decision next week as to whether I will begin the Prolia. For me, it is the probable reality of future fractures vrs the potential long term consequences of a drug with approximately a decade long history.
Gabriele
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