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New to methotrexate

Posted by pdxmac @pdxmac, 5 days ago

My rheumatologist started me on methotrexate this week, given my 15-month struggle to taper on prednisone. I'm wondering what I can expect in terms of the taper schedule for the steroids. She told me to not expect a major outcomes, at least in the beginning. I know everyone's journey is an individual one. But I'd love to hear your experiences. Thank you!

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sticksandbugs | @sticksandbugs | 5 days ago

Hi, I was unable to get below 40 mg prednisone daily (CRP kept rising, was up to 60). Doctor added methotrexate (started end of December 2024) but said to stay at 40 mg prednisone daily until CRP got down to 5 or 6. I was tested on Jan 14, CRP down to 15, so I'm still on the prednisone 40 mg. I have to keep stopping methotrexate because of various nasty side effects (horrible mouth ulcers) and other problems (currently shingles) but hoping my CRP on Feb 10 will be better. Once CRP is 5, then I can start tapering 5 mg every 2-3 weeks. I was hoping for faster but doctor said to go slow. May I ask your current prednisone dose?

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1 reply
pdxmac | @pdxmac | 4 days ago
In reply to @sticksandbugs "Hi, I was unable to get below 40 mg prednisone daily (CRP kept rising, was up..." + (show)
@sticksandbugs

Hi, I was unable to get below 40 mg prednisone daily (CRP kept rising, was up to 60). Doctor added methotrexate (started end of December 2024) but said to stay at 40 mg prednisone daily until CRP got down to 5 or 6. I was tested on Jan 14, CRP down to 15, so I'm still on the prednisone 40 mg. I have to keep stopping methotrexate because of various nasty side effects (horrible mouth ulcers) and other problems (currently shingles) but hoping my CRP on Feb 10 will be better. Once CRP is 5, then I can start tapering 5 mg every 2-3 weeks. I was hoping for faster but doctor said to go slow. May I ask your current prednisone dose?

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Sure. I'm at 20, which is where I started 17 months ago. I got all the way down to 10mg, but I started having jaw and vision issues and the rheumatologist was concerned enough about CGA that she bumped me back to 20. I had an ultrasound this week and it looks like I don't have CGA. But now here goes the taper again.

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sticksandbugs | @sticksandbugs | 4 days ago

Just a comment about the methotrexate. It really helps me but side effects were difficult. I took folic acid 5 mg the day after methotrexate to try prevent side effects, but that was ineffective for me so now I take leucovorin 3-5 times a week (not on methotrexate day) and that seems to be more helpful. Methotrexate makes me feel sick for a couple of days so I ruin my weekend by taking it Saturday so that I’m ok for work on Monday 🙂

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prestol | @prestol | 4 days ago

I think methotrexate has helped me as well. I started taking it in August when I was at 12.5 mg prednisone, and I gradually worked up to 25 mg weekly with absolutely no side effects. I have slowly tapered the prednisone to my current 5 mg. My pain level remained at 1-2 throughout this process. However, my pain has abruptly returned a few days ago in a few new places (hips, thighs) as well as the old places, and I am concerned. Not sure what to do but am starting with a new rheumatologist on Monday.

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