Connect
Comment receiving replies
Thank you! That’s what I hope is happening to me. Both my GP and Rheumatologist warned me of the side effects of taking prednisone but neither one of them warned me about the side effects of getting off the prednisone other than a vague warning not to drop too fast.
Best of luck on your PMR-free journey!
Replies to "Thank you! That’s what I hope is happening to me. Both my GP and Rheumatologist warned..."
O-M-G !! I just responded to a different conversation with this comment that i highlighted from this paper , which mentions PMR quite a few times -
- " When discussing glucocorticoid taper- ing, patients should be counselled about the possibility of withdrawal symptoms. "
So shannon - i'm with you entirelyy on what you stated above !! I just moved an apt with rheumatologist few weeks earlier and intended to discuss that !
So - @shannonjp, @hunib33 and @lungranger77 could you tell me 1) if you were doing a split dose and 2) what time of day did you take your lower and lower doses of Prednisone ?
I have a new physical therapist who has really focused into the difficulties that prednsione tapering could present for the plan of care . Are terms such as "glucocorticoid withdrawal" and/or steroid induced myopathy to be used only after a specific Dx ? And-FYI- i also have a history of lumbar issues and my PCP and i are wondering if i could have "meralgia parestheitica " -- has anyone ever heard of this ?
I am concluding that in the MASS GENERAL Brigham system the type of coordination among doctors is not as i expected it to be . I bet you all are happy to be rid of PMR and ( albeit) low doses of Prednisone ( and need for rheumatologist?) HA!
Connect
Just so you know ... I was on prednisone for 12 years for PMR. Prednisone suppressed my immune system. Prednisone also suppressed my adrenal function. I had a low cortisol level when it was checked after I got to 3 mg of prednisone.
The reason for a vague warning about not tapering off prednisone too quickly is more about the suppression of adrenal function rather than causing flares of PMR. Both PMR flares and adrenal insufficiency can happen though if you taper off too quickly.
I only got off prednisone because a biologic called Actemra prevented flares of PMR while I tapered off prednisone. It still took a year for me to get off prednisone while taking Actemra. I stayed on 3 mg for many months until my cortisol level improved and I was able to taper off prednisone.
Actemra doesn't suppress adrenal function like prednisone does. My cortisol level normalized eventually. Adrenal insufficiency can cause muscle aches and pains too. It sounds like you have tapered slowly enough so I hope adrenal insufficiency won't be a problem for you. I would suggest getting an a.m. cortisol level checked as a precaution.