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Tapering and methotrexate
Diagnosed with PMR in March, was on 20 mg of prednisone for 6 weeks and then tapered 2.5 until I reached 10mg in June and then after a month tapered to 9 and after another month to 8mg. I apparently was not aware that pain I felt in tapering was most likely due to an onset of osteoarthritis throughout my body which delayed the tapering. I am now at 7.5, taking it slowly, but the doctor suggested I start methotrexate and supplement with folic acid as she felt I would have trouble tapering.
But I understood that it was advised to taper, after reaching 10mg, only once a month. So it seems to me I may be on track. Has anyone started methotrexate and felt it helped in tapering. Does it have any long term effects to be aware of ? And I wonder if others on prednisone for long periods of time have suffered other complications? Is it just that we have to deal with the long term effects and hope for the best?
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I also was diagnosed in March. Started at 20mg now down to 8. Dr. started me on 8 mg of Methotrexate, 2 weeks ago, to aid in coming down on the Prednisone. My recent blood test came back, and now on 7 mg Prednisone.
That’s great… thanks so much for sharing …we can compare progress … my doctor prescribed 15 mg once a week plus 1mg folic acid daily. I am just concerned that I am not just trading one road block for another as am not sure of long term effects of the Methotrexate…. Have you had any side effects?
I refused Methotrexate as I was told that I'd need another drug after that. Also offered Leflunomide, don't want to take that either. Meth we lose our hair and mine is thin enough from taking Pred for 4 yrs. We can take 5mg forever as I've been told by my Rheumy that's the amount our bodies produce in Cortisol.
I am on methotrexate as I try to taper down the prednisone. 25mg meth right now a week and down to 7mg prednisone a day. I was diagnosed with pmr last December. Yes some side effectswith meth. Headache, nausea, fatigue for about a day. One day. Now at 8 months on methotrexate and the side effects are minor. Still have an off day but it’s improved every month. Worth it to get off prednisone. I’ll have to stay on meth for awhile.
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1 ReactionI’m down to 2 mg prednisone now with help from 25 mg Methotrexate injections but really notice pain a few days before injection …the side effects of the Methotrexate only last for me the day I take it but the fatigue is easier to handle than the sore joints causing no sleep the few days before injection …looking forward to the start of Actemra
I used steroids and methotrexate over a year treating giant cell arteritis. These meds controlled the arteritis but led to adrenal deficiency. I visited the Mayo Clinic and Mayo prescribed Actemra to replace steroids and methotrexate. Actemra has kept me symptom free and my adrenal function has returned to normal.
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1 Reaction@curtvapor
How long have you taken Actemra?
My adrenals recovered in spite of 12 years of prednisone for PMR. I had to stay on 3 mg of prednisone until my cortisol level improved. My symptoms were controlled on Actemra but it still took a long time to get completely off prednisone because of adrenal insufficiency.
I was unable to taper off prednisone until Actemra was tried. Now I have been on Actemra for almost 4 years. I'm wondering when I will be able to be off Actemra. My rheumatologist thinks I'm better off being on Actemra instead of prednisone.
I’ve been using Actemra since 11/17. My original dose was once a week, but now it’s 2 shots / month. In 2021 I extended my dosage to 1 Actemra shot / 3 weeks and when sed rate and c reactive protein measures increased I reverted back to 1 shot / 2 weeks.
I’d love to be free from Actemra but so far giant cell arteritis symptoms return when I reduce dosage. Since beginning use of Actemra no side effects are obvious although my cholesterol levels have increased.
All in all I feel much better using Actemra than the combination of prednisone and methotrexate.
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3 ReactionsI'm happy Actemra works for you.
I'm going in the opposite direction with Actemra. I started with an injection every two weeks. I was able to get off prednisone but it took a long time. PMR was under control but a low cortisol level was a problem.
After I tapered off prednisone the first time, I had a flare of uveitis so my ophthalmologist put me 60 mg of prednisone again and stopped Actemra. My ophthalmologist thought Humira would work better than Actemra for uveitis. I could not taper off prednisone while on Humira when PMR symptoms returned. Humira was stopped and Actemra was restarted with weekly injections instead of every 2 weeks. I tapered off prednisone the second time in less than 2 months.
Weekly injections of Actemra worked well until I had problems with my lumbar spine. A neurosurgeon said I would need to be off Actemra injections for a month before and a month after surgery for a lumbar fusion. The idea was an Actemra infusion would be okay if I could go 2 months between infusions. An Actemra infusion worked too well because a synovial cyst in my lumbar spine disappeared. All my lower back pain stopped and I stayed on Actemra infusions every 4 weeks.
We will try doing infusions every 5 weeks but otherwise there is no plan to stop Actemra anytime soon. I feel well and I don't have significant side effects from Actemra. I have mostly recovered from prednisone side effects.
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1 ReactionI tried the methotrexate. That stuff is wicked. I couldn't take it. I don't remember the side effects, but just remember they weren't good. I just got on the Internet and read up on it. I think my PMR is in remission right now.