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I think this is a simple way to communicate the logically possible outcomes for PMR. I certainly wouldn't judge a Rheumatologist's capabilities on this brief moment. I've heard it, too.
Note that the American College of Rheumatology has established care guidelines. This amounts to the standard of care in the US.
Also important to remember that the biologic Kevzara was approved (by the US FDA) less than a year ago. It's been a game changer, or perhaps a life changer, for so many of us. I was stuck at 8 to 10 mg of Pred when I started Kevzara on June 12. Today I'm at 4 mg and decreasing 1 mg per week. I'm able to go to the gym 3 to 5 days per week and I've begun Pilates instruction. My daily step count is also breaking thru the 6K barrier that I could barely tolerate even occasionally touching before.
I'm so glad you're under the care of a rheumatologist. Keep learning and developing your homecare plan - diet and exercise, in my experience, aren't nearly as helpful as these drugs but they are certainly powerful enough to male a difference for many of us.
Good luck to you and keep us posted.
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I had a similar experience with Actemra (tocilizumab). I was skeptical that Actemra would work so I only tapered by 1 mg per month from 10 mg to 7 mg. Being a skeptic, I decided to taper faster to get the "inevitable flare" over with. I tapered by 1 mg per week from 7 mg to 3 mg. Since 7 mg was my "insurmountable barrier" I could never overcome, I was in uncharted territory on 3 mg of Prednisone.
I called my rheumatologist to get some instructions. I wasn't feeling particularly well on 3 mg of Prednisone. Some of the exercises you are currently doing may be more than your adrenals can handle. Exercise is good but it is also stressful to the body especially when you are not used to it.
What happened when I was on 3 mg might be useful to you depending on on long you have taken Prednisone. An a.m. cortisol level was checked by my primary care doctor. When my cortisol level was low, I was referred to an endocrinologist. My rheumatologist said I shouldn't taper any lower than 3 mg until I saw the endocrinologist.
I would highly recommend having a cortisol level checked at the stage you are at --- just as a precaution.
As it turned out, I was on 3 mg for about 6 months until an endocrinologist said my cortisol was adequate. The endocrinologist didn't know and would not predict what would happen if I stopped taking Prednisone. We had a long discussion and made contingency plans for when I would discontinue Prednisone. The endocrinologist said I could go back on Prednisone for any reason if "I felt the need."
Things didn't go particularly well the first time I discontinued Prednisone. I needed 60 mg again a week later! I had a flare but not a PMR flare which was a bit of a surprise to everyone involved.
I tapered off Prednisone a second time but not until a different biologic was tried. In the end, it was my choice to go back on Actemra. My Actemra injections were increased from every two weeks to every week. The second time I tapered off Prednisone was uneventful. I tapered from 15 mg to zero in 3 months. There were no surprises the second time I tapered off Prednisone.
I have been off prednisone for 3 years. Actemra was a game changer for me too. I currently do monthly infusions of Actemra.