Post prednisone

Congrats on getting so far in your journey!

Not to sound trite, but everyone is different so it’s hard to say if it could be transient aches and pains, deconditioning while your body continues to recover, fatigue, flare/recurrence or something else… It may be early yet to worry, and if you’re not significantly limited, you could continue to wait and observe, but it may not be a bad thing to reach out to your doctor/rheumatologist just in case or if it would make you feel better to have an action plan if it does clearly become a flare (I’m that person that feels less anxious if I know what to do).

Or, a conservative step might be to ask to get your labs checked to see if your inflammatory markers are elevated?

I’m a caregiver to my father who has PMR; he’s been stuck at 5 mg in his taper since the end of last year due to some health setbacks. But for him, the first signs of a PMR flare are fatigue and weakness, before the pain hits. This makes it really hard to tell at the beginning if he’s having a flare unless he’s due for labs, but when we observe fatigue and weakness, it’s usually a red flag.

Thankfully, he’s not seronegative, so checking his ESR and CRP is usually a reliable indicator if he’s not sick with something else.

It’s better for him for obvious reasons to catch the flare before it becomes significantly limiting, so when the fatigue/weakness persists for 10 or more days, we usually make it a point to get his labs. His rheumatologist puts in a standing order and requests tests roughly every two weeks when possible anyway, which makes it easier for us to do.

The good news is that I repeated my blood work 10 days after my final dose and everything is now in normal range. I’ve just been surprised that I’m experiencing symptoms I didn’t notice at any other point in my tapering.

I’m due to see my rheumatologist in 4 weeks. If I’m still experiencing this weird fatigue I may ask if I can do follow up blood work before my visit.

Hi. And thanks for your post. I'm at the one year mark this month. Last Sept. I was down to 5mg when I had a flare up that I couldn't tolerate. Had to go back up to 15mg for ten days then back to 10mg and begin the 1mg/month titration. I get mild to moderate aches and pains until I seem to normalize on the new dose reduction. I take Tylenol Q day. My exercise lately has been mostly yard and house maintenance in which I do get some painful aches and pains that resolve within a couple of days rest. Been on 7mg for 8 days now and today I feel great. Last year I had the flare up only 3 weeks on the 5mg. Maybe I was weaned too quickly? I'm purposely staying at least a month and a half at each tapered lower dose. I also get some extreme fatigue which seems to be present when I'm sleep deprived for extended periods of time.

I'm Hopeful that I'll be off the Prednisone this year. In the meantime my L-4 L-5 Buldging disc has not been a problem since I've been on the Prednisone which is huge for me. My doc wants to keep me at 5mg for a while when I get there again. Not sure yet what he meant by "a while." If I have to land on the " lowest effective dose" and have to stay there the rest of my life , I'm ok with that. The quality of my life is a priority.

Congratulations on on the progress.
Ernie

@shannonjp, I would like to add my big congratulations along with the others that you were finally able to taper off of prednisone. I'm thinking it's a good thing to be a little aware or concerned about the return of PMR but not to overly worry about it. It sounds like you are continuing to walk and stay as active as you can which is really important.

I'm a little over six years past my second bout with PMR which lasted 1 and half years. My PMR is still in remission but I realize it's still there somewhere lurking in the background so I continue with my daily exercise routine of riding a recumbent cross trainer bike (Teeter FreeStep) for 30 to 45 minutes at a time, sometimes twice a day. I do as much walking as I can but it's limited due to spine issues. I also try to eat healthier which plays a big part too. Recently have been working on PT for shoulder pain related to osteoarthritis to strengthen the muscles and tendons involved with the rotator cuff. I did start thinking about PMR again when this latest pain showed up but for now it's thankfully PT and pain creme to the rescue and not prednisone. 🙃

@shannonjp. Yes I’ve gone through and am going through the discomfort and symptoms you described. I completed my course of prednisone at the end of Nov. 2023. Aches and pains are pretty much the new normal, but they’re subsiding. I take acetaminophen less often, I ache less often, my muscle strength and stamina are returning. I’m being patient with myself and hope you’ll be patient t too. Things do get better. Remember prednisone was masking all of this and now ‘we’re on our own’. Remain positive and be in good health.

I would also like to congratulate you for getting off prednisone!

My experience was much the same when I tapered off prednisone. I felt like I was only in the "eye of the storm." That was how I described being off prednisone. I felt there were problems everywhere in my body. I feared that being in the eye of the storm was only a temporary reprieve from PMR.

It took time for me to feel like the storm was gone and wouldn't return. I now feel like PMR is gone and it is time to rebuild but that takes time too.

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!

This gives me hope!

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.

Thank you for your reply. I live near a national park and before PMR I was walking 4–5 mi., sometimes a mile or two longer 3-4 times a week. I’m walking at an indoor track now that it’s winter and am doing 3.5-4 mi. and I’m thankful to be able to do that. You will get better and more active. Be patient.