Prolia side effects-increased RA inflammation

@donna33, I'm tagging fellow member @guera60 who has shared that she too have rheumatoid arthritis and other autoimmune conditions and started taking Prolia.

Has your rheumatologist suggested not continuing with Prolia?

No. When I told her I thought my inflammation had increased since starting the Prolia and asked her if she had heard of this, she completely dismissed
the idea by shaking her head “No”
My Endocrinologist, who prescribed the Prolia, also said he had not heard of this as a side effect.
I am seriously considering not getting the second injection in August, especially if I am feeling better toward the end of the six months.

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.

I get a bone scan every year and Medicare covers it. Check. It could be because my bones are so bad or because I am on a bone building drug.

Hi:
Thanks so much for responding. My pain is also mainly in my legs-I have to stop for breaks when I’m walking
And have never had to do that.
But the worst pain and inflammation has been in my
knees. Getting up and down is very painful.
You said you had inflammation also. Do you also have Rheumatoid Arthritis?
And is the inflammation significantly worse when you’re on Prolia?
That’s what I’m experiencing,
but not sure my doctors are acknowledging that this could be caused from the drug.
I look forward to hearing from you and will pray for you.

From what I understand the reason for waiting two years is to be able to see a definite change.

Donna, No I don’t have RA. The research I’ve done on my own says one of the side affects of Prolia is inflammation. I have increased inflammation as the time progresses from injection to the next injection. Right now I’m at month four. My inflammation has been much worse than the last injection. Yet I do notice if I pay attention to my food intake it can make a very slight difference. Example is if I eat ice cream I’m miserable compared to if I eat an apple.
My knees have also been worse. I do have arthritis in both knees. Keeping up with strength stretching helps. My knees have been painful for many years. I’m of the belief that keep moving but try not to overdo it. Getting my knees to bend easily is awful. They are just too swollen. I blame that on losing three inches in height. I’m sure my knees take on that extra pressure.
So, to answer your question, yes, inflammation IS a side affect of Prolia. That said. We all have different chemical makeup in our bodies so we feel those affects differently. Some of us will have more than others.
I’ve recently had another thought about Prolia. If I don’t take the injection my bone loss continues and that is painful. If I do take the Prolia injections my bone loss decreases but it causes pain. So either way I’m experiencing pain. I have not yet figured out if maybe that’s a good or bad way to look at this Prolia medication.
Thank you for your prayers. I to will pray for you. THAT we know helps!

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.

Donna,
I’m so sorry you’re having so much trouble. Trying to help one problem creates another. Treating that then causes other problems. It never ending. I have adrenal fatigue and take prednisone for almost fifty years so immune problems have been consistent in my life. I keep trying. My recent PT has helped my get just a little stronger. How much time has past since you had the last Prolia injection? The more time that passes it should get better. I think. That is how mine has progressed. We all are different. Try to fight back against the pain. I can only take Tylenol. It does help a little. Just don’t let the pain get the best of you. If possible keep moving more often ….in spurts throughout your day. Never sit more that an hour at a time. Your new medication may have different side affects. Prednisone does help my pain also. But it makes my gain weight then that brings more problems. The balancing act is up and down. Yikes! You are so right when you say it’s all overwhelming!

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.