Where from here PRO

As You always said the more you relapse the harder to get back. So my NYC rheumy reduced so quickly that I relapsed and became very, very ill. He ignored the high CRP and the ESR was low and didn't think hm....something is wrong with this blood work. The lab screwed up, but he kept reducing. Never been so sick from anything in my life. I went back to 20mg after being at 10when I relapsed. Actually it was 12, and still not right. CRP 7.8 from 33 ESR at 28 from 42. But in between ups and downs. Steroid myopathy bad again. So no more famous Rheumy. Went back to doctor who treated me for PMR briefly in 2011and lo and behold we are thinking alike and I am a person not a number. Together we decided I need to try Actemra. Have lots of skin cancer just diagnosed and need surgery. Also never had my eye surgery and everything is on hold. Have been trying to get down to 10 and it's not happening. If blood tests ok for Actemra that's my next step. Not thrilled to be on such a dangerous biologic but I must do something fast because 20mg not doing it. Even if I get down to to 10mg on the Actemra that's a milestone for me after 2 years of 40 and 30 most of the time I guess I'm looking for approval or opinion it's 5 years of high doses of prednisone for me. What do you think PRO Thank you.

Marilyn

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  • I hate being right :-(

    Good luck - but it does sound as if your doc and you are singing from the same hymn sheet at last. But I am a bit concerned it ISN'T PMR if you have needed such high doses for so long.

    But see how you get on with a new doctor and Actemra - you can always stop if you have to and there are other similar drugs they are trialling now.

  • Yes thank you pro. When I had PMR from 2011 to 2014 the doses were not high. I was allowing my rheumatologist to reduce the way he wanted because I did not become familiar with the disease I left it in someone else's hands. My interest in myself was not there at the time. I was also very lucky that I did not have a lot of pain aside from the initial excruciating pain which was taken care of by the prednisone

    When I was diagnosed with GCA I was much wiser and read everything possible and joined the group. As I said before I have gone through eight or nine rheumatologist who have one track minds and I do not enter the picture so I have been basically Setting my own pace until the last famous rheumatologist who did me in. This last relapse was so bad I almost gave up. It's not easy dealing with so much stuff. It goes from the eyes to the torn meniscus to the torn ligament in my right knuckle to all the cancer on my face and chest to the steroid myopathY. But then someone comes into my life and I regain the strength to start all over again. I have this hope that I will get well one day and come visit you in Italy. A trip I was supposed to make before I got sick. I hope my bloodwork is normal so I can start new drug. I am putting everything else off for now. Thank you again I always look forward to your responses.

  • It does seem with this disease that there is one thing after the other. I seem to always be treating some part of my body for something. Now it's knee (from lifting my grandson) . It has also been a rude awakening about medical field

    I feel for you 😘

  • Nap 1, you are in my thoughts and prayers. You've been through so much, and my heart goes out to you.

    Edward

  • Thank you Edward. You folks are all in my prayers always. After all we are an extended family from one continent to another. And who knows better than us what we go through from day today. Luckily we have each other and our knowledgeable and kind PRO, for whom I am eternally grateful 🌞(Is that proper grammar)? Marilyn

  • PMRpro... I am interested in the trialling drugs you mentioned...which ones are they ? Thanks so much for mentioning that.

  • There appear to be studies on ustekinumab in Dublin and sirukumab in France but I really don't know any more than that, they appear to be at pretty early stages and local rather than world-wide. They are both biologics that work on the IL-6 cytokine which is implicated in GCA and PMR.

  • Thanks... might keep a watch on those.

  • Will do some research on those drugs. Do I first have to learn the pronunciation? Thank you Marilyn

  • Recognising them is probably enough! I'm sure every country has a different version ;-)

  • Yes it is disappointing the limited amount of knowledge that Rheumatologists have about this disease. And what knowledge they do have is incorrect. In my case I was caused to have a third relapse and had to go back up to 20 mg of prednisone, after violent withdrawal symptoms at 12.

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