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
Thank you very much for your information!!!I am going for my second prolia shot very soon. I realize that everyone reacts differently to different medication‘s but your information made me feel confident! Thank you!
-
Like -
Helpful -
Hug
1 ReactionFor about 8 years. First weekly then bi monthly. Stop only when on antibiotics or infection.
-
Like -
Helpful -
Hug
2 Reactions@megangreen, thanks for your note. Am I understanding correctly that you slipped back into osteoporosis while you were still taking Prolia? If so, would you mind letting me know what your endo says about that? Is this an unusual occurrence? I had not heard of that happening with folks who were on Prolia... thought everyone responded with at least minimal gains, but obviously I was mistaken.
Yes, I am taking D3 and many other supplements, and am trying to get enough calcium daily. Exercise has been limited because of my spinal stenosis, but I'm working on that. So, basically I'm trying to do all the right things and it's just not enough. I realize that we don't have the same issues, but it's heartening to hear that you haven't had problems with Prolia. Maybe I'll get lucky, too.
-
Like -
Helpful -
Hug
3 ReactionsI have taken and just in my very own opinion I would not recommend it. It seemed Like all my problems started once I started Prolia. I know your Endo is leaving it up to you so… I wish you all the best. In my opinion, the less of these drugs in my system the better. I’ve had severe reactions to Entyvio And Remicade. Now I am controlling things (Pain and bowels ) with diet. I stay away from night shades and really notice a difference in pain level. I’m also on Lyrica. I would also recommend A homeopathic doctor if you haven’t seen one already. I’m curious what you’re going to decide. All the best to you, my friend.
-
Like -
Helpful -
Hug
4 ReactionsI have PMR (diagnosed in 2013) and I took my first Prolia shot last month. So far I have had no noticeable reactions.
I have advancing osteoporosis so I must avoid corticosteroids. I am extremely sensitive to NSAIDs as well, so my rheumatologist has had me on 400 Mg of Hydroxychlorine daily for the past three years.
I will be taking my next Prolia shot in about five months along with a follow-up bone density test to determine if my osteoporosis situation is improving or not.
Hope this helps, and I am very curious about what experiences others in the autoimmune group have had with Prolia. Thank you all!
-
Like -
Helpful -
Hug
2 ReactionsI have been on Prolia for 3 years as I have severe Osteoporosis at 55.
I refused the Prolia for a few years and tried seeing if I could get my T-score to improve by using supplements and exercise, but no luck so I had to pick something.
Thankfully besides a sore arm, I have never had a bad reaction to the Prolia shot.
I tested positive for Lupus SLE last year, but my endocrinologist thinks I fit more with MCAS symptoms as I have had whole body hives for a year, despite having symptoms of both autoimmune conditions. I also have Hashimotos thyroid.
Good luck! I hope the Prolia helps you.
-
Like -
Helpful -
Hug
3 ReactionsI’m writing to clarify my above comments. The very first month I was on Prolia I Broke a bone in my foot just by stepping off a curb. Then I had to have two dental implants. So I wonder with all the listed side effects pertaining to jaw and fractures, Perhaps it does the opposite of what it’s meant to do in some people.
-
Like -
Helpful -
Hug
3 ReactionsMy sister is taking it and her thigh bone cracked I often wander if that’s why
-
Like -
Helpful -
Hug
2 ReactionsI have generalized Myasthenia Gravis. I was on Evenity for a year and gained some bone, so now I’m on Prolia for the rest of my life to maintain it. I didn’t have any side effects on Evenity and didn’t have any from the one Prolia shot I had in May. My next shot is in November
-
Like -
Helpful -
Hug
2 ReactionsI have autoimmune conditions such as asthma, lichen sclerosis, rosacea. I also have fairly severe tinnitus and hyperacusis. I have been told that I need to take one pill a week to I strengthen my bone density. I also take a maximum dose of Lyricia without any problems but react very badly to most antibiotics. I am afraid that the pill I take to prevent osteoporosis will not be adequate as I age, I am 77 now. My fear is that medications can cause or worsen tinnitus, thus I am under severe stress with any new medication. My question is whether anyone taking Prolia or a similar drug has tinnitus and whether Prolia or similar drug has experienced a worsening of their tinnitus.