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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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Thanks for letting me know, @ivannafeelgood. I'm glad to hear it's working well for you, and that the fibro symptoms were transitory. I know it's been 4 years, but do you recall what your T score was in hip/femur when you started? I am wondering how much you had to gain to get back into the osteopenia range.
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1 Reaction@bebstein, I didn't realize the hair loss side effect could be so severe. Thanks for letting me know. Did the alopecia start right away, or were you on Prolia for a year and a half before it started? I so envy you for being able to skip the drugs!
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1 Reaction@marilynredder2367, thanks for letting me know. Am I right in assuming you have had no bad side effects from the Prolia? BTW, I'm right there with you in the lousy bones/arthritis department, and am glad to hear you're doing well!
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1 ReactionI have been getting probably a shots twice a year or five years and I’ve never had a problem. I have two auto immune diseases, possibly three.. I don’t know anyone who has experienced any difficulty in my group of friends
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1 ReactionI noticed hair loss 3 months after starting. Didn’t look at the list of side effects until after second shot and scalp biopsy. Happily I never had Osteoporosis and never had a fall, so the medication was prophylactic. Now on Plaquenil, Minoxidil, and Biotin for hair loss. It stopped the hair loss.
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3 Reactions@leigh17, do you mind telling me what your autoimmune illnesses are?
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1 ReactionNo, I don’t mind at all. I have Sjogren’s and collagen type two antibodies, which essentially means connective tissue disease..
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4 ReactionsI’m glad you were able to handle Actemra, Might immunologist put me on it and then three months my stomach bloated up to look like I was three months pregnant, But my osteoarthritis inflammation lowered and I felt so much better. Now the my stomach bloating is back in I’m wondering if even was the drug. Do you mind me asking how long you’ve been on it? Thanks ! I was doing monthly IV injections.
I have taken Prolia for years. Never had any issues with it. I have many autoimmune diseases also. I am very sensitive to almost all medications but Prolia has never caused issues. Best of luck.
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2 ReactionsI have Sjögren’s Syndrome and a fair number of other non autoimmune issues, including one which has required me to take corticosteroids for many years.
Have been prescribed Prolia for about four years now. My recent Dexa scan showed I had slipped back significantly into the Osteoporotic range. Will be seeing my Endocrinologist next week and will see if she has any other ideas.
I have never had any problems at all with Prolia but then I don’t have super hypersensitive skin like you do.
Are you taking Vitamin D3 supplements also?