Thoughts and advise on adding Cell Cept to PMR treatment

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I have PMR for 3 years and on prednisone. I use the slow taper from this sight which was wonderful. Got down to 9.5/9 mg and my inflammation numbers tripled which the RHEUM dr freaks out. So back up to 11mg . I am starting my taper and on 10.5mg which this time I don't seem to be tolerating well. My appt last week she said I must start this medicine. I have tried Methotrxite and Plaquenil which neither I could tolerate. She said if I don't do something I will never get off Prednisone. Wants me to start Cell Cept but very nervous of side effects.

Having cataract surgery end of DEC due to Pred.

Would appreciate thoughts and concerns, on CELL CEPT since I don't do well with meds. THANKS SO MUCH. SUCH A GREAT FORUM

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10 Replies

  • Posted

    She is talking drivel - the median duration of pred management for PMR is 5.9 years - some less, some, obviously, longer.

    https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings

    Most people I know have needed a good 5 years of pred but still got off it. I know of one gentleman who was on pred for 11 years before getting off it.

    If you didn't tolerate the first two so-called steroid sparers what makes her think this will be any different? And Cellcept/mycophenolate mofetil is not a drug that is normally used for PMR/GCA. None of these drugs have any effect on the disease mechanism of the PMR - so where is the justification?

    Look at Recommendation 7 here:

    https://www.rheumatology.org/Portals/0/Files/2015%20PMR%20guidelines.pdf

    If she is so desperate to get you off pred then why isn't she looking at Actemra since you are in the USA (I assume since you speak of prednisone). It is known to work for at least half of patients - but even it isn't a guaranteed means of getting off pred.

    It is all very well adding other immunosuppressive agents to pred but, as you have already found, there is another layer of side effects to consider. And there is some evidence being seen that adding to immunosuppression may increase the long term risk of some forms of cancers.

    Once the pred-induced cataracts are removed that is it - they won't return although there is a thing that can happen and requires laser surgery.

    • Posted

      Thank you very much . she did suggest ACTEMRA but that has so many side effects as heart attack and stroke, since they both run in my family i was very nervous about that one. and its a shot every 2 weeks, don't think I could do that since I pass out if not laying down giving blood etc. EILEEN do you have any opinon on either drug be the less of two evils . thank you

      YES I am in the US?

    • Posted

      If I were you I would seek a second opinion. This one sounds panicked by pred - which really isn't that bad. I have atrial fibrillation - so although theoretically I could apply for Actemra here in Italy, that is also an adverse effect so not a good idea. I also need a higher dose of pred to manage the a/f at present (I've had a PMR flare) - the cardiologist is happy since she can't offer anything more/better for the a/f, so I told my rheumy. He hasn't contacted me to say no. I've been on pred for over 9 years - so what? I haven't crumbled, everything is well managed and I have a good quality of life. My cardiologist is adamant: QOL is all. And the rheumy is similar.

    • Posted

      THANKS Eileen for the insight. yes the DRS in the US freak out about STERIODS.

      M y gut feeling was NOT to add anything. appreciate all the time you take replying with such great insight.

  • Posted

    Did you start getting pain at 9mg or did your inflammation markers just increase for no reason? My markers have shot up in the past for no reason and my doctor has panicked and wants me to increase the pred.

    • Posted

      I had some pain also, kinda learning to live with it, but when the markers increase red flags go up. I'M on 10.5mg now and have alot of hip/leg pain in one leg only, now its starting in my foot, I was doing well but getting nowhere with reduction.

    • Posted

      That doesn't sound like PMR itself - do you have low back pain? Especially muscular? That sounds like possibly a sciatic problem - and spasmed back muscles can cause that, myofascial pain syndrome or piriformis syndrome often lead to it. Mine was/is a lot better at higher doses of pred but reappear as I reduce.

    • Posted

      THANKS I always thought I had something else since my pain seems so different from what I read about others. Will try to get to the root of all this pain, The RHEUM DR is my third opinion and all say the same, guess I'll try a fourth, TY

    • Posted

      For an opinion on muscle tightness you might find a physiotherapist a good option. Mine was identified and sorted by a mix between the Pain Clinic and physios. But our Pain Clinic looks for causes and then uses hand-on techniques, not teaching behavioural techniques to deal with pain,

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