Experience with infusions of Rituxan and PMR

[nymima01]

GM Everyone - I want to write of my experience with infusions of a drug called Rituxan. I was diagnosed this past May with lymphoma and a tumor in my spleen. My oncologist started me on an infusion once a week with Rituxan. I was diagnosed with PMR in Dec of 2016 and put on the prednisone protocol starting at 20 mgs and tritating down monthly. The PMR was actually a differential diagnosis of my cancer in my case. (This is not always the case however). My CRP in December of 2016 was up to 82 and my ESR number was very high also. After I finished the 4 rounds of Rituxan on June 15th, my CRP and ESR numbers were less than 5! So the Rituxan reduced my inflammation numbers and this relieved my PMR and also put me in remission for my lymphoma and my tumor was indistinguishable on the cat scans.

Fast forward to today - Aug 28, 2017, and my shoulders are achy, as well as other parts of my body. I am still maintaining my prednisone protocol as per my rheumatologist, and I am on 6 mgs of prednisone about to go to 5 mgs come September. But I feel the PMR presence creeping in again.

But I am wondering if Rituxan did such a great job with reducing my inflammation and wiping out my tumor, why it is not used to treat PMR or GCA? I see Rituxan is used to treat Myasthenia Gravis now (a neurological disease) and possibly other long term conditions. Instead of staying on prednisone for years and years sometimes, what if Rituxan can be used in such a way to treat PMR or GCA? Just a thought in my part. I had no side effects from Rituxan and in fact felt wonderful and had so much energy compared to the awful fatigue that I had before. Sometimes one will have an allergic reaction to Rituxan, but they give steroids and benedryl to offset that reaction.

Any thoughts on this?

[PMRpro Ambassador]

There have been no studies on the use of rituximab in PMR/GCA - probably because it is not seen as targeting the postulated mechanism for either which involves the cytokine IL-6. Until a drug has been extensively tested in a particular disorder it can't be licensed for that illness. It is used in lymphoma - and you say your PMR was found in the dx of your lymphoma. The lymphoma was treated by the rituximab - and the PMT-type symptoms therefore resolved. It is a different scenario.

And for PMR the cost would be a big problem - it is about £10K per year. Pred costs a couple of hundred at the most.

[nymima01 in reply to PMRpro]

I was just wondering as I see the Rituxan is being used for many different conditions now. I know that if I have a relapse with my lymphoma, I will receive Rituxan again - tweaked with another drug instead of the usual chemo drugs.

I realize they would have to do some clinical trials first, but I wanted to speak about my experience, even though it is a bit different than most others who have PMR.