GCA tapering and differing rheumie views. I think... - PMRGCAuk

PMRGCAuk

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GCA tapering and differing rheumie views. I think I now have the one who understands.

Dontwannabesick
Dontwannabesick

Diagnosed July last year and put on 65mg pred. Did fine. Waited 9 weeks to see Rheumy doctor who immediately ordered drop to 30 mg. You can imagine what happened next. I went back to 60, they then put me on MTX 10mg increasing to 15 after 4weeks, and when I felt better started on a slower reduction. Got down to 55. Went to clinic, rheumy nurse (Hitler) said go to 40 then reduce weekly by 2.5 to 30. After that go 1 mg per week until you get to 10mg. Willing to try, got to 24, then reached a point where between MTX side effects, followed by steroid withdrawal meant I was just rough all the tie. Friday, nicer, kinder rheumie nurse advised reduce MTX to 10mg and go back up steroids to a point where I feel better, then listen to my body and reduce at a slower rate. Tried 26 mg for 2 days then up to 30 yesterday and today. Only had 10mg MTX yesterday. Today I feel so much better. Sorry for sermon, but I have felt so happy, I have been singing (not gonna win any talent contests any time soon)

10 Replies
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Your second Rheumie nurse sounds like one of us. So happy that you are happy and singing. The occasional respite we can get is wonderful, you could jump for joy. I wonder if normal people get it or it’s just the contrast for us?

SJ she is lovely. I think they are probably all doing their best, but she is the one who has the experience. I just feel so happy. I know I probably did too much today, but at least I felt like doing it, and tral la lah xx

Sounds like a good plan.

PMRpro
PMRproAmbassador

I'm a bit taken aback at the original rheumy - what a clown...

Agree totally. I think he is more used to tapering PMR. They were convinced I'd started on 40mg as originally prescribed by Clinical Assessment. I told them all that the opthalmic guy who did the biopsy immediately upped my dose to 65mg, but they didn't change their records. Comms between the departments is bad, they've only just got the results of my biopsy done last July!

PMRpro
PMRproAmbassador in reply to Dontwannabesick

Good lord - wouldn't do to be an emergency would it!!!

I love your (Hitler) reference. I had a similar experience with my first rheumy appointment. Glad you seem to be on track. Best of luck.

Thank you

It makes such a difference doesn’t it when somebody gets it! So pleased you are feeling so much better. Make sure you go back to that rheumy nurse not “Hitler”

I'll do my best, but if I am unlucky enough to get Hitler again I'll tell her what I'm going to do. It's my eyesight!

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