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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SusanEllen66 | @SusanEllen66 | Jun 27 11:31pm

@bayhorse I’ve been getting Prolia shots for about 4 years. I also have autoimmune diseases.

I’ve never had a problem with Prolia

elisabeth007 | @elisabeth007 | Jun 28 7:47am

i have refused to take Prolia. i have severe allergies and don't want to accept the risks

bayhorse | @bayhorse | Jun 28 11:48am

@elisabeth007, is your osteoporosis severe? And what are you using to manage it?

bayhorse | @bayhorse | Jun 28 11:49am

In reply to @SusanEllen66 "@bayhorse I’ve been getting Prolia shots for about 4 years. I also have autoimmune diseases. I’ve..." + (show)

@SusanEllen66, do you mind telling me what your autoimmune issues are? I am wondering if they are similar to mine. Also, can you tell me if you had any side effects, even transient ones, after you get your Prolia injection? Many thanks...

elisabeth007 | @elisabeth007 | Jun 28 7:05pm

In reply to @bayhorse "@elisabeth007, is your osteoporosis severe? And what are you using to manage it?" + (show)

my osteoporosis is moderately severe. However, i have never broken a bone. My endo is so concerned about my severe adverse drug reactions to two different osteoporosis drugs, he thinks it's better that i don't take any osteoporosis drugs. He is a very good endo and does not want to accept the risk of me having another severe reaction. i take calcium citrate and eat a lot of dairy products

SusanEllen66 | @SusanEllen66 | Jun 28 11:21pm

In reply to @bayhorse "@SusanEllen66, do you mind telling me what your autoimmune issues are? I am wondering if they..." + (show)

@bayhorse
I have never had any kind of reaction Prolia.

My autoimmune diseases are fibromyalgia, and Vasculitis. I was on prednisone for awhile when the Vasculitis first appeared.

marilynredder2367 | @marilynredder2367 | Jun 29 9:24am

In reply to @SusanEllen66 "@bayhorse I have never had any kind of reaction Prolia. My autoimmune diseases are fibromyalgia, and..." + (show)

I take Prolia and have for about five years. I also have several autoimmune diseases and I take. Actemra. I have been on prednisone since 2011. I have lousy bones and lots of arthritis issues but all things considered. I am better than some at 83.

bebstein | @bebstein | Jun 29 11:45am

I have Sjogren’s and Osteopenia and took Prolia injections for a year and 1/2. I developed frontal Fibrosing Alopecia. Hair loss is a side effect, so I stopped. I was switched to RECLAST and had numerous side effects. My Dexa score is not bad, so I’m done !

ivannafeelgood | @ivannafeelgood | Jun 29 11:57am

I have battled fibromyalgia off and on, and I have sebo-psoriasis. I have been on Prolia for about 4 years. The first year I had some fibro symptoms for a few weeks after each injection, but after that I was fine. The drug has worked wonders, taking me from the osteoporosis range back to the osteopenia range.

bayhorse | @bayhorse | Jun 29 12:20pm

In reply to @elisabeth007 "my osteoporosis is moderately severe. However, i have never broken a bone. My endo is so..." + (show)

@elisabeth007, thanks for getting back to me. My spine edged back into the osteopenia range with the help of the Tymlos, but my hip/femur made no gains, and I am really worried about that, as I also have some avascular necrosis in the hips from years on steroids for UC. So glad you are doing well without the drugs. My doctors (rheumy & endo) take one look at me (I am tiny and weigh under 90 pounds), and the first words out of their mouths are "You have to be on a drug." I don't know what I will do...

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