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Anyone with autoimmune problems taking Prolia for osteoporosis?

Posted by bayhorse @bayhorse, Jun 27 1:17pm

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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Profile picture for bayhorse
bayhorse | @bayhorse | Sep 20 11:30am
In reply to @sstojanovski "I don't have an autoimmune disorder that I'm aware of; however, after taking Evinity for a..." + (show)
Profile picture for sstojanovski @sstojanovski

I 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.

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@sstojanovski I'm so very sorry to hear what you're going through! It sounds horribly uncomfortable, and I wish I had some advice for you. Did you contact the patient consultants at Amgen (the company that manufactures Prolia)? You can call the company to report adverse events and side effects, and perhaps one of the nurses there can give you some advice. Meantime, I wish you all the best!

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elisabeth007 | @elisabeth007 | Sep 20 3:11pm
In reply to @sstojanovski "I don't have an autoimmune disorder that I'm aware of; however, after taking Evinity for a..." + (show)
Profile picture for sstojanovski @sstojanovski

I 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.

Jump to this post

you may want to see an allergist. i hope you don't plan to take prolia again. I have had numerous adverse reactions to osteoporosis drugs. My endocrinologist didn't want to risk prescribing prolia to me.

Hopefully a good allergist can figure out a way to resolve the issues arising from prolia injections

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sue417 | @sue417 | Sep 21 7:26am

Hi
I do a bisphosphonate called reclast once a year it's an IV don't have any issues with it did they not suggest something like that

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bainbridge | @bainbridge | Sep 21 9:14am

I have taken Prolia for years. Started at age 70- now almost 79. It worked well and bone density improved. My doc took me off- and felt it was important to stay on another osteoporosis med. Started fosamax - had reaction. Switch to Reclast. Bone density fell within a year- so back on Prolia. Within the last year I have developed PMR- Polymyalgia Rheumatica. On steroids for over a year- will have Dexascan in a few months to see if steroids are effecting bone density! Wild balancing act! Will stay on Prolia at doc recommendation.
Good luck to you -

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gofishto | @gofishto | Sep 21 9:17am

I have RA 6+ years. I was on Prolia for 11 years, in the 11th year it didn’t work so Jan 2024 I did Reclast a yearly osteoporosis got much worse. Currently on my 8 month evenity
Recently had lumbar spine X-ray shows osteopenia. It’s working. After my last shot this January I will go back on Prolia.

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bren0718 | @bren0718 | Sep 22 6:05am

I am 62 years old and have been fighting PMR for over 2 years. I have tapered off my prednisone down to 2 1/2 mg from 20. I was diagnosed with severe osteoporosis 2 years ago. I took the Evenity shots for a year and had a significant amount of bone growth. Now I am on Prolia. I am getting ready to take my second shot. I had zero problems with either my Evenity or the Prolia. Thankful since my bones are so bad. Trying hard to get off of the prednisone. Now I’m taking 6 mg of methotrexate. Slight side effects but am feeling better.

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ldimm | @ldimm | Sep 23 2:09pm

I have taken prolia for years. It's been wonderful for me. No side effects.. and better bones.

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megmaniac123 | @megmaniac123 | Sep 24 12:45am

I'm going on my second year with Prolia have not had any problems with it
I do notice my nails grow a lot better though kind of a positive effect

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