not posted for a while - been a very up and down year so far.
Rheumy saying one thing me doing another. An anguished letter to him in early Sept. resulted in a fast, unexpected appointment. Quick summary: he wanted me to reduce pred faster than I did - mini flares and extra pains in wrists andthumbs. He says that is OA - mind you he also told me the PMR was done with and I have OA in shoulders, neck and hips OOOOOOOOOOOOOO.
Think letter made him jump but he still says PMR runs its course in 18months to 2 years REALLY??? Anyway, I told him that had gone back to 10mg and would stay there for a while to see if system settles again.
He agreed, finally, but still says 10mg too high to stay on long term, does he think I want to stay on this forever?
QUESTION have you any info on AZATHIOPRINE .
That's what he wants to try next. Have had blood tests to check if ok to start this [it will take 3/4 weeks].
Oh CPR 10 [he agrees this is raised and ESR 27 which he claims is in normal range.
Sorry to ramble but am one confused lady.
Nearly forgot - he says PMR is inflammation NOT an autoimmune condition.
Thanks for being there guys.
Cath
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As far as I know there is little evidence that aza has a significant effect in PMR. I "failed" methotrexate - there was no suggestion of any point of aza.
I can't help with the Azathioprine for PMR part, but I do know it is a big gun.
I took it along with 100 mg prednisone for 6 mos for autoimmune hepatitis. You might google it and see its applications and side effects--sorry I'm not good at copying links. If methotrexate has side effects, this might be much worse. Good luck dealing with your rheumy.
Thanks Joaclp I know it is usually used as an anti-rheumatic drug, the reason he wants me to try it because it "calms down the whole system". Will check on side effects. xxx
I was on azathioprine for 9 weeks 2 years ago the side affects we're awful for me especially on top of all the Prednisolone side affects.At, I came off them did not see the point of taking a drug with all it's own sideaffects to get off another,So just reducing in small amounts very slowly.
I am taking 100mg of Azathioprine at night as a steroid sparer. Compared to Methiotrexate I don’t really suffer any side effects. I have a blood test every six weeks to check on my liver and kidney function. It’s a bit of a balancing act , I didn’t suit high doses of steroids but with no additional medication my CRP and pain levels were high every time I reduced the prednisone dose. It’s not a magic cure taking the Azathioprine but I am making progress, but it has been over 4 years since I was diagnosed. I will add you do have to be aware you are immunosuppressive and be careful with possible hazards such as food poisoning.
I think this one is probably up to you and how much faith you have in your Doctor.
Thanks for this Sallyaches it's nearly 4 years since I was diagnosed, I am reeally not sure about Azathioprine. I'll do more thinking. Don't have in rheumy but my gp is happy about it. Thanks again. Keep going. Cath xxx
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Latest rheumy appointment
Disappointing letter from Rheumatology.
Rheumy - grrrrrrr!
