Prolia side effects-increased RA inflammation

Posted by donna33 @donna33, May 19, 2023

I received my first Prolia injection in February, 2023, and since then I have had increased inflammation. I have had Rheumatoid Arthritis for 38 years and I my most recent flare up has lasted for the past 6 years. But after this injection, my inflammation has been more extreme. I also have had intense muscle and bone pain in my legs when I try to take daily walks outside as I always have. I have to stop and take breaks frequently and this has never happened to me before.
But I am most concerned about the increased RA inflammation.
Has anyone with RA experienced this?

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@donna33

Colleen,
To be sure I'm understanding how this works, are my comments reaching out to all members or are you the only one who can see this? I hope it's to everyone so that something I say may help someone. Also, when I clicked on the above link for the fellow member, I did not see an option to post a comment.
In response to your question about continuing with Prolia, I have since read that people with weakened immune systems like me, are advised not to take Prolia, because of the side effects.
I was never told this by the doctor prescribing it or my Rheumatologist.
I don't have plans to continue this drug, but I'm also very concerned about being more prone to fractures if I stop taking it and if this is even true.
I am taking bone builder supplements from my primary care physician, who is also Integrative Medicine. He also ordered PT for strengthening. However, I have had so much pain in my legs from the Prolia I have not felt much like doing the exercises. And walking is still painful.
To make things worse, I have had to increase the Prednisone to help me with the pain and inflammation until another drug I agreed to try, Leflunomide, starts working, which can take 3 months. I am completely overwhelmed and am just praying continually and I know that God will open the right door.

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I am not taking Prolia be abuse of side effects too.
I have a kidney transplant and aneurism in my aortic already have surgery.

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I do not have RA, however, I had increased inflammation (bursitis) in both hips since being on Prolia and now have an issue with popping in my low back. I never had these issues before taking the Prolia.

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After my first injection if Prolia, I started having severe leg pain when walking outside, and had to stop every 5-10 minutes because the pain was so bad. The pain has gotten much better now, since the drug must be wearing off, but I am due for another injection and feel pressured by my MD to take another one. However, two pharmacists I know very well, have warned me that the bad leg pain is a red flag. Has anyone experienced this with Prolia? I am terrified the leg pain will start again.

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@donna33

After my first injection if Prolia, I started having severe leg pain when walking outside, and had to stop every 5-10 minutes because the pain was so bad. The pain has gotten much better now, since the drug must be wearing off, but I am due for another injection and feel pressured by my MD to take another one. However, two pharmacists I know very well, have warned me that the bad leg pain is a red flag. Has anyone experienced this with Prolia? I am terrified the leg pain will start again.

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I hope you can effectively switch to Forteo, Tymlos or Evenity!

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@donna33

After my first injection if Prolia, I started having severe leg pain when walking outside, and had to stop every 5-10 minutes because the pain was so bad. The pain has gotten much better now, since the drug must be wearing off, but I am due for another injection and feel pressured by my MD to take another one. However, two pharmacists I know very well, have warned me that the bad leg pain is a red flag. Has anyone experienced this with Prolia? I am terrified the leg pain will start again.

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I have been on Prolia for 3 1/2 years, coming up on my 4th shot. I have started having hip, groin and thigh pain and wonder if it is from the Prolia. When I ask the nurse paractioner he says not from Prolia but I still wonder. I am thinking of going to a Endocrinologist.

I do not remember being told once you start Prolia you can never go off, wish I had know

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@kjane322

Donna, your story is similar to mine. However, after the first six months and pain lessening as I got closer to needing the second injection I talked myself into getting the second injection because I did think I should give the Prolia a chance because I did believe it could help my bones. So after the second injection the leg pain and inflammation did come back. I concentrated on stretching and trying to eat less. Although none of that took away pain it helped getting through it. I now have less pain because I’m at month four before needing the third injection. I wish I knew if it was helping my bones. Yet I’m told I have to go through this another year before we can compare to another test. When I complain of pain to my endocrinologist she also dismisses it. I’m wondering if it is because of the double edged sword theory? Maybe the pain is a side effect of the bone improving? I honestly don’t know. I don’t think doctors know for sure. I think they just try to allow us to last longer as we age because it is what we want. I get up everyday and try to move around enough to keep me functional. I rest several times a day. I sleep well most nights and just keep plugging along. If this Prolia proves to be helping my bones after another year then I’ll know if it’s worth it. Everyone has a different situation. I’ll just keep trying. Good luck in making your decision. It certainly is not easy.

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I am confused. I refused to take Prolia because of the side effects - pain in the bones and joints. Are you saying you have this pain and are continuing?

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@salisbury2491

I have been on Prolia for 3 1/2 years, coming up on my 4th shot. I have started having hip, groin and thigh pain and wonder if it is from the Prolia. When I ask the nurse paractioner he says not from Prolia but I still wonder. I am thinking of going to a Endocrinologist.

I do not remember being told once you start Prolia you can never go off, wish I had know

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I am sorry you did not research this drug before beginning your regime. You would find that the pain you are experiencing IS one of the many side effects of Prolia. I will NOT take this and am doing my own thing with Calcium, Collagen, Circumen and plus other suppliments. I insisted on a bone density test after one year instead of two and my numbers had lowered. My personal goal is to get to osteopenia - one step below Osteoporosis. Because I am in the Winter of my live I am not afraid of the radiation as it is the only time I have it. A nurse practiceioner is not qualified to answer your questions. An Endocrinologist should be. Also look up exercises to increase your strength. Walking is good as is light weights and stretching. I do some of this every day with 4 lb bar bells, stretching plastic ties and two tai chi movements. All the best to you and Good Luck, salisbury.

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@debralnidel

I do not have RA, however, I had increased inflammation (bursitis) in both hips since being on Prolia and now have an issue with popping in my low back. I never had these issues before taking the Prolia.

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I am sorry to started these injections. Hope you feel better soon and can find an alternative even though I'm told you can not stop once you've started. Do I believe this? I don't know.

All the best.

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@tkdesign

IF you have to take another drug to fight the side effects of the first one, than there is something wrong with that drug to begin with! I hate how the pharmaceutical industry just doesn't care...it's more money in their pocket to keep making more drugs. You end up worse than you started, or just different problems.

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Amen to that. Big Pharma wins and we lose and spend a ton of money losing. I am angry with those in charge of the drug companies as they don't listen to what thousands of us have to say. This is wrong along with a lot of things in our country today.

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