Post prednisone

I have been off prednisone since mid November at which time my markers were near zero. I have spent the last several months trying to get my body to feel the way it did before all this started. My best guess is less use of various body parts contributed to weakness here and there. Nothing serious, just off. Close to being back to my old self.

Congrats on getting off prednisone!

It sounds like your adrenals are still trying to become fully functional therefore could be why you are experiencing some fatigue. From my understanding is that after tapering off a corticosteroid it can take several months to a year for your adrenals to start working optimally after being suppressed for an extended period of time by a corticosteroid.

As with all things regarding PMR, patience is key. This is just one more step toward recovery.

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!

@nyxygirl. I did not split my doses. I took the dose for that day the same time I did every day (within minutes). That was successful for me. Also I was not treated by a rheumatologist, my Internist was very familiar with PMR and her approach was different from most of the posts I read on this site. I started with an aggressive dose of prednisone for about 12 days, she smacked PMR in the mouth right off the bat, and I think my taper was successful because of that. 😅 All the best with your journey. Be patient.

Thank you for this contribution. I’ve been looking for someone with my experience and yours is about identical. Finished prednisone last November, 2023 and same body experiences. Up and down but flexible compared with full on PMR. Stiff upper legs and hips waning faster and mostly gone. Stiff upper arms and shoulders a bit more persistent but I can tell it’s moving in the right direction. If I do too much one day because I’m feeling great, the next day I am utterly stonked! I swim daily and have some physio exercises for my arms. Patience….

I didn’t split my dose either. I tried it once when I was taking ~12 mgs because the morning pain was difficult for me but that didn’t work. Then I tried taking my dose in the evening and that helped more with the morning pain. I’m fortunate that it never caused sleep issues and I took it several hours before bed to avoid GI problems.

My ophthalmologist said the same thing about hitting it hard at the start. It was to treat uveitis that was very aggressive during the first couple of flares. One of my first experiences with uveitis was starting with steroid topical eye drops progressing to a low dose of prednisone. Then I worked my way up to 100 mg before uveitis started to respond. Even at 100 mg, uveitis wasn't responding well until I split my dose.

Uveitis can cause vision loss and I was believing my affected eye was a "lost cause" until I split my prednisone dose. I told my ophthalmologist after I tried a split dose. It seemed to work so I wanted his blessing. He said he didn't care what I was doing because he agreed that whatever I was doing was working!

When I had my next flare of uveitis, my ophthalmologist said he wasn't going to mess around with lower doses of prednisone. That was when he said he wanted to hit uveitis hard with 60 mg to start and adjust either up or down as needed. That worked well too as long as I split my dose.

There are some reasons for not splitting your dose. The reasons are related to adrenal suppression. I believe this is pertinent when you reach 10 mg or less. Anything above 10 mg your adrenals will be suppressed no matter what.

@cazwell50. I understand completely the stage you’re in. I’m still in that stage to some extent—if I overdue exercise one day it’s as though my body punishes me the next day with pain. So it’s a balancing act and most of the time I get it right, but then I’ll overdue it assuming I’m further along with healing that I actually am. My body quickly reminds me. 😅 Oh well. Patience.

@dadcue. I’m happy for you that splitting doses worked. We’re all trying to find what works best. I’m convinced that hitting PMR hard the first 8 days or so minimized all the bouncing around with tapering. And apparently that was your experience too with your eye condition. Good health to you!

Yes ... uveitis provided me with the unique experience which allowed me to visualize the inflammation inside my eye. It would start with black dots called "floaters." It would rapidly progress to black and white specks which looked like "salt and pepper." Eventually the white specks would turn into a "white fog" that became so dense I wouldn't be able to see my hand in front of my face.

My ophthalmologist could also look inside my eye. He would quiz me about whether or not the inflammation was getting better or worse. He would then do his own assessment and observed the inflammation inside my eye himself. He was impressed that my assessment was always the same as his assessment.

The options given to me were either "better" or "worse." One time I couldn't decide so I said the inflammation stayed "the same" as before." My ophthalmologist was astonished but had to agree the inflammation stayed the same as a couple of days before.

Every flare of uveitis was different. All flares of uveitis were classified as "urgent" by my ophthalmologist meaning I needed to be seen right away. However, I sometimes classified my uveitis flare as "wimpy" as compared to "aggressive."