Connect
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...
Like
Helpful
HugInterested in more discussions like this? Go to the Autoimmune Diseases Support Group.
Connect
I have been on Prolea for a couple of years now and it’s improved my bones - no fractures, knock on wood. I have no reactions to it either so far. About to get another next week - hope my fortune continues. I have RA and patio, and adult muscular dystrophy (78). So far it’s ok and doing its job!
-
Like -
Helpful -
Hug
3 ReactionsI take a lot of drugs too for auto immune diseases and I take prolia. I will tell you what I have found when I take my OXY 10 mg the tinnitus gets better when it wears off it just gets loud. It is hard to fall asleep with tinnitus, and it’s miserable to wake up with it but if you can ignore some of it, it is livable.
-
Like -
Helpful -
Hug
2 ReactionsHave been on it for years now. No side effects surprisingly. I am allergic to most drugs. Best of luck.
-
Like -
Helpful -
Hug
2 ReactionsThank you for letting me know, @catartist. I hope you continue to do well!
-
Like -
Helpful -
Hug
1 ReactionHi, @cjozwiak. When you say you are allergic to most drugs, are you speaking of specific drugs? I am wondering what your autoimmune issues are.
-
Like -
Helpful -
Hug
1 Reaction@slem, your system sounds somewhat similar to mine given the lupus and the hives. It is heartening to hear that you haven't had a bad reaction to the Prolia. Thank you for weighing in!
-
Like -
Helpful -
Hug
2 ReactionsBayhorse, I am allergic to all the drugs for Fibromyalgia, Cellcept, Plaquinil, pain meds and more. I have mixed connective tissue disease with overlap, Fibromyalgia and a list of a lot more.
-
Like -
Helpful -
Hug
1 ReactionThanks for letting me know. Your list of sensitivities sounds as bad as mine. So glad you're doing ok on Prolia.
Hi, I don't have the complicating issues that you have but I've taken Prolia for a few years with no side effects. It has also stopped my bone loss. I have Sjogren's which contributes to my chronic dry eye. I hope that it works for you if you decide to give it a try.
Karen
-
Like -
Helpful -
Hug
1 ReactionI don't have an autoimmune disorder that I'm aware of; however, after taking Evinity for a year, my doctor suggested I take Prolia for a year. Two injections every 6 months. I agreed since I didn't have any known reaction to Evinity. Shortly after my Prolia injection, I developed a terrible rash that has now spread to my head, arms, back, and some areas of my chest. It's very itchy and bumpy, and nothing seems to help. I'm taking antihistamines (I've tried several), plus I've tried everything topical and a month on Decadron. No relief. I'm thinking it may not clear up until the 6 months that the injection is in my system. Everyone is different. You may not experience this side effect, but I thought I'd share so you are aware.