I'm new here

Hi, was diagnosed with GCA/PMR nearly seven years ago. I have really struggled to come right down on steroids. Some flare ups and then steroids put up high and start again reducing slowly. Consultant put me on methotrexate 6 months ago alongside prednisolone to hopefully bring me off steroids. Currently on 5mg and 25mg methotrexate. I have monthly blood tests. Reducing steroids by 1mg every 2 months. Can only increase/decrease once spoken to my doctor. I notice on here quite a few make decisions themselves on dosage. How do you find this?

4 Replies

  • Really I think we make our own decisions in the context of a taper or after being on pred so long we know more about ourselves than the doctor (not difficult). I've had PMR for 13 years, 5 years no pred, nearly 8 years on pred at a variety of doses, never successfully below 5mg. But I have no desire to try mtx - I have no problems with pred and no identifiable side effects now. Some people have PMR for a very long time - I'm one of them.

  • I hope your doctor has complete respect for you and the symptoms you may be experiencing at any given time. I manage my own taper, but I did ask my doctor's opinion when I brought in a copy of the dead slow schedule for her to see. She approved it and has let me get on with it, even being a bit of a cheerleader as I got my dose lower! I think this is a refreshing change from the doctors I read about on the forums who want their patients off pred asap no matter what, consequently triggering flares and ironically leading to a higher lifetime dose of pred. Perhaps it was her laid back attitude from the get go which has enabled me to be so successful tapering (so far, touch wood).

  • That's good to hear. I did feel hospital was trying to bring me down too quickly which did result in a flare up.

  • Experts say that the most common cause of flares is reducing too far or too fast. And the evidence from the forums would confirm that!

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