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Anyone with autoimmune problems taking Prolia for osteoporosis?
I have severe osteoporosis and am being told I should start Prolia, as I've already taken my limit -- 2 years -- of anabolic bone builders (Tymlos) and must start a new medication next month. The choices for my particular case are Prolia or Evenity, which is contraindicated for me because I have heart disease. But I am concerned about infection & immune consequences from Prolia and would like to know if any of you have had experience with this drug.
Prolia is implicated in infections ranging from cellulitis to UTIs to sepsis to endocarditis (and more). They are not exactly common, but they do happen. I have lupus, celiac disease, and ulcerative colitis as well as unexplained skin problems, and I am already on Entyvio, which is a minor immunosuppressant (gut only) for the UC. My allergist calls my immune system hyperactive, as I've become hypersensitive to everything: odors, most every airborne allergen, the sun, detergents, etc., etc., etc. Sometimes just pressure on my skin will start rashes.
Prolia, like many other drugs, also can cause "hypersensitivity reactions" like rashes, hives, shortness of breath, and I am wary of those side effects as well. (One more itch and I may lose my mind!)
There is also the possibility of joint and muscle pain. My autoimmune problems do not cause this (so far), but I'd hate to add that problem to the pain I already suffer from lumbar stenosis.
Prolia has other potential bone-related risks, as do all the other osteoporosis drugs other than the 2 anabolics (Forteo & Tymlos). But I have injected my limit of anabolics and my osteoporosis is severe enough (T score -3.4 in total hip) that drug treatment is a must. My endocrinologist is leaving the new drug choice up to me, and I would dearly like to hear from anyone with autoimmune issues who has taken Prolia. It is injected once every 6 months, and if I have a reaction and must quit the drug, there can be fracture-related consequences.
Please let me hear from you if you have any experience with Prolia. Many thanks in advance...
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@ailsas Can you tell me a little more about the spinal fracture? Were you aware of it right away? What was your treatment? Do you have any after effects?
I think it important that everyone is aware of all the problems when you have osteopenia or osteoporosis. I, too, broke a vertebrae in my neck. It was caused by a freak accident. Luckily, with Reclast, I no longer have osteoporosis, according to my doctor.
Because I deal with chronic pain was not aware of something unusual until an X-ray showed the damage.
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1 Reaction@becsbuddy
Should have added that the clinic did not follow up or treat other than increasing hormone replacement therapy. But I had a rather lazy nurse practitioner in those days (no longer use that clinic). Chiropractor did a lot of acupuncture
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2 ReactionsI have been on Prolia for quite awhile. Never have side effects and it is working well for me. I was able to return my bones to normal after Tymlos treatment. On Prolia for maintenance some have remained normal with only a bit of osteopenia.
I am in remission from the autoimmune disease Polymyalgia Rheumatica and need no treatment for that.
I would definitely recommend Prolia. A good drug!
Best wishes!
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2 Reactions@missy245 hello-yes, I tried fosamax and the others and I had terrible chest pain and ended in er a few times
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1 ReactionI am 73 years old and took Fosamax and Boniva long-term. I have had MS for 30 years and took IV steroids which helped cause my bones to weaken, plus I am a small frame woman. I also have had Rosacea and Tinnitus for many years. Breast cancer surgery in May 2025 and Radiation in April 2025 (was on hormone replacement therapy long-term). I exercise for 15 minutes daily, with no bending or twisting due to severe scoliosis (55 degrees). I use decompression for back pain and take 2 Tylenol for arthritis each morning. I was on Evenity for 1 year with no problems. Helped my spine, but not my hips, just like another lady my age and size. I have started Prolia in October 2025. Had aching for 2 days after. Also a friend who is retired RN had the same effect.
My best to anyone dealing with bone density and meds. Linda
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5 ReactionsI have been doing Prolia for about 1.5 years. I have not experienced any pain or side effects. I have oral and vaginal lichen planus.
I had a recent dexascan and it showed that I have gone from osteoporosis to osteopoenia!!! Yay!!! So I am ecstatic about that!!!
Prolia can have an effect on the immune system and I have had three sinus infections since November so I wonder if Prolia weakened my immune system or just coincidence.🤷♀️
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3 ReactionsI have been on Prolia for 6 years due to ultra high doses related to my WIAHA. It is a shot given every 6 months. I have no side effects. My scan have shown improvements in my osteoporosis.
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1 Reaction@lmoross
Are you on Medicare with a supplement? I have to start taking something for osteoporosis and my Dr wants me to get yearly Reclast infusions. It's covered under my part B. I wondered if Proia was covered under part B, or my part D medical insurance. Thank you.
For me it’s part B. I have to go into the clinic every 6 months and I receive the injection there by staff. I am on Medicare.