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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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Just a thought but could the hair loss be related to genetics and age? I get Prolia shots. I do have hair loss. Have been on multiple treatments for osteoporosis. So if Prolia is the cause I suppose I will accept that because it is the lesser of two evils but I think my hair loss predated Prolia.
@microgirl I am 78 and in July 2019 was diagnosed with lichen planopilaris, similar to your lichen planus and also an autoimmune disease, but on my scalp. It not only inflames the scalp, it kills many hair follicles and, left untreated, it can result in permanent hair loss. I did lose a fair amount of hair before we got it under control (took ~3 years to get to that point). A good percentage of the hair eventually regrew. I was also diagnosed with osteopenia decades ago, but didn’t start Prolia until April 2020 after a compression fracture. I’m still on it, likely for the rest of my life. So, my hair loss predates my start on Prolia. I did not notice any worsening of hair loss when starting Prolia and the hair I regrew has remained stable all the while I’ve been on Prolia. For me, I don’t feel there is any connection. I would see a dermatologist knowledgeable about hair loss (not all of them are) to help diagnose the cause of your hair loss.
BTW, if the inhaler prescribed for you is a steroid (very likely it is): developing oral thrush can be the result of not rinsing your mouth out after every inhaled dose from a steroid inhaler.
Good luck figuring this out!
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3 Reactions@maryellen22 I have an autoimmune diagnosis and have also gone back to the more cheerful diagnosis of osteopenia. I didn’t know until your post that hair loss can be attributed to prolia. I thought it was due to my old age.
However, I had 3 trip and falls between 2018 and 20024 that required emergency room visits for head injuries and sutures for 2 visits. Following my MD’s advice, I had a series of visits to a physical therapist. I also accepted use of a forearm cane for balance.(a chronically unstable ankle).
I have always rejoiced that Prolia saved me from broken bones! Glad that I didn’t know to blame Prolia for hair loss.
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1 Reaction@microgirl Did you try other biphosphanates like Fossamax or Actonel or Reclast before trying Prolia. My understanding is that those should be tried first and only try Prolia if you have not had good results with those.
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1 ReactionFosamax made me sick to my stomach. I told my doctor and he switched me to Boniva. No problems now.
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1 Reaction@maryellen22 , I too had hair loss on Prolia. I was switched to RECLAST. I now have Exocrine Pancreatic Insufficiency and Colitis. RECLAST should not be used if immune deficient and have mal absorption. I do.
I never had osteoporosis, just osteopenia. Drugs can cause a drug spiral. Be careful out there.
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2 Reactions@bebstein I’m also taking Reclast and have exocrine pancreatic insufficiency. Where did you get your information about not taking Reclast if you’re on immunosuppressant or have malabsorption syndrome? I need to talk with my MD before next Reclast infusion next month.
Do you think the EPI was caused by the Reclast?
@maryellen22
I have severe osteoporosis also. I took the Evenity shots for a year with good results. I am now on Prolia. I have had 2 shots so far with no side effects. I was diagnosed with PMR 2 1/2 years ago. I take 2 mg of prednisone daily (down from 20) . I have been slowly tapering to get off the prednisone since it is awful for your bones. About 7 months ago I started taking methotrexate. Started at 4 mg and now at 8. Little to no side effects and it has helped me taper off of the prednisone. I was worried about the side effects of Prolia but was happy not to have any problems. I’m a 62 year old female.
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1 Reaction@becsbuddy , I read the voluminous paper work that came with the infusion. It was handed to me in a patient information folder accompanying the infusion. It stated that it was not to be used by those with mal absorption. I developed the EPI and colitis a month after the infusion.
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1 Reaction@bebstein comment on osteopenia versus osteoporosis. Either mean you have thinning bones. Either mean you are more liable to fracture from a fall. I had spontaneous spinal fracture although considered to have “mild” osteopenia. The terminology’s criteria changes constantly.
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