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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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@minnmitzi
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Like minnmitzi I am covered for Prolia. Medicare and supplemental insurance. Was.on Reclast for several years. Also in Minnesota. Call your doctor and insurance and ask.
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1 Reaction@minnmitzi I have quite a few autoimmune diseases but I have no choice when it comes to osteoporosis which I can’t let that go. well these medication‘s have many many many side effects and they’re not great! for the last year and a half every six months I have been taking a pro Leah shot this year in January I was due for another pro Leah shot from Summit Health and the nurse said they weren’t allowed to give probably shots anymore because they charge the people $1000 for the shots so now what they’re doing they substituted prolia for a medication very very similar that’s called JUBBONTI. Which is free when you have Medicare. Things are changing all the time I have to learn how to take one day at a time. I would be happy if I don’t have any of these medication‘s for my osteoporosis but I do not have a choice. I have to learn that I’m better off not looking at the side effects because they all have so many side effects!!! good luck to you with your osteoporosis!!!
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6 ReactionsI have been on Prolia almost for 2 years. I did not know the relation to UTI"S or I would have addressed the issued by now. For whatever reason, I totally missed it. Now, I am paying for it. I have had a UTI now for 4 months at least. I just can't get rid of it. I continue to take medicine to get rid of it and it does not go away, or I may be symptom free for a few days and then it is back. My next shot will be on the 9th of February, and I will be going to the doctor before then to get their opinion on what to do. I also have auto immune disorders, and it runs in my family. It has been very difficult over the years dealing with what I already have and hearing from a sibling what they now have and wondering if that is what I will have next. If you have auto immune disorders, you tend to have more than one. This medication has been my Godsend. My bone numbers are normal for the first time in a decade. I am concerned that in stopping the Prolia I will spiral down if I am unable to tolerate anything else. Thank you for sharing your story, If I had not read this, I would not have known what was happening. Whatever decision you make be sure that you work with your doctor(s) and go over all the possible side effects before choosing your path.
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1 Reaction@bayhorse It started within 6 months. On RECLAST, I developed Cologenous colitis and EPI. My doctor said that since I have osteopenia, no more drugs.
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2 Reactions@jamid
Just for info in case you are a diabetic. Some of the diabetic meds that get rid of the glucose through th kidneys/urinary system cause recurrent UTIs.
I have autoimmune with multiple stomach issues and kidney disease. The doctors said I really needed to start treatment for my OA so the endocrinologist chose Reclast Infusion. I was the one that had a horrible reaction. Diarrhea like I have never experienced before, vomiting, 103 temp, joint pain to the point I was walking with a walker. Got horribly dehydrated. Couldn’t eat fot 4 days. My joint pain continued with horrible tingling for close to 4 weeks. I got put on prednisone which helped it just took time. Messed up my creatinine count and calcium count. I probably won’t take it again. My doctor says that I may not have that bad of reaction next time. That’s not good enough for me. I’m willing to risk fracture I think
@ragtop2005 After 2 years, I still have digestive problems after taking RECLAST. I wonder if having Sjogren’s contributed to my reaction.
@bebstein I have Sjogrens as well. I’m telling you I’m not sure I will ever be completely back to normal. It’s been 3 months now. I read a case where a lady had issues for close to a year they attributed to Reclast. So yes I feel it could be from it. Here’s hoping it gets better for you. I just think we have to learn to be our own advocates and be sure to research everything that’s being recommended for us to put into our bodies. Sometimes I think it’s like poison to some individuals.
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1 Reaction@twistedwillow That doesn't surprise me at all. Get rid of one problem and add another. The story of my life.
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1 ReactionI hear ya! It’s been like that for a while it seems. Makes you want to throw away all meds or at least it does me