Diagnosed pmr officially 3yrs,previously provisionally 2yrs.Was on pred till june2015. but then taken off pred. Dec. 2015 had bad flare-up,lost 2 stone in 3 weeks,put back on 20mgs pred.This has now tapered to 7mg. Tomorrow is my 4th infusion or rituximab,when would I expect to come of pred. I am 75yrs old and in Paisley the medical people don't seem to like old codgers to be on pred. too long.Still the best site for information for pmr. problems. Thank you, John.

5 Replies

  • I don't know of anyone else on the site who is prescribed Rituximab, it's more generally used in RA. Hopefully someone will be able to help with that side.

    If you are on 7mg Pred, why do they want you to go lower? It would seem that Rituximab has done it's job as a 'steroid sparer' and you are down to a manageable dose. At that dose the side effects of Pred are minimal (in my case there weren't any at all) and it's about the same amount that you would make naturally.

    How long will you be on steroids? I wouldn't hazard even an educated guess. 15+ years for this 'old codger' so far as I will be on them for life.

    Hope someone else knowledgeable comes along soon.

  • Rituximab isn't approved for use in PMR - and the most recent Guidelines for the Management of PMR say in Recommendation 8

    "No recommendation can be made for other biologic

    agents as no prospective trials have been published so far. There is one ongoing randomized study on the use of tocilizumab (clinicaltrials.gov NCT01396317) and another three-arm trial comparing secukinumab, canakinumab and GCs (clinicaltrials.gov NCT01364389) in PMR. The results of these studies may lead to a modification of this recommendation."

    So I doubt there is anyone on the site who can answer that question.

    Given the cost of rituximab - why aren't they trying toclizumab which does at least have some background in its use in PMR? It seems fairly likely to be approved in at least some countries for GCA after the most recent Phase 3 clinical trial and has been tried in the USA for several cases of PMR with apparent success.

  • Hi Paisleyman74' Less of the old codger! Medics don't like anyone. to be on steroids. Your flare up sounds bad, you must have been so ill. You have done well to get back down to 7 mgs. I know nothing about retuximab but have become a very annoying patient, in that I question everything the doctor attempts to prescribe, research a lot on the Internet and certainly learn from this site. I have no wisdom to offer you, just my best wishes. I hope the sun shines in Paisley.

  • Thank you everyone. I should have stated that my infusions have taken place on the last 3 Thursdays and tomorrow is the 4th and last,thank goodness,takes 5 hours. Sheffield jane I was really ill ended up in hospital xmas eve, on pred. immediately and got back to my daughters house that night. If I google rituximab I find it has as many possible side effects as pred. Anyway when i'm asked how i'm keeping my stock answer is "i just keep taking the pillsThank you all for your replies Paisleyman74(john)

  • Hi John,

    I have certainly hear of a few people with Takayasu's Arteritis ( the other large vessel Vasculitis ) being treated with Rituximab off label ( in specialist centres ) but have never heard of it being used for PMR. I am amazed that your Rheumy got funding for it as its use is very tightly controlled!