Chronic Fatigue while tapering Prednisone for PMR

Hi Mickie @njtodctode, Both times I started at 20 mg and was able to drop down to 15 mg and only had a 1 or 2 pain level which was my bottom line on the pain scale of 1 to 10 for tapering down. I don't think I was 100% pain free in the morning before taking my daily dose of prednisone to start the day. I know each of us are different and my rheumatologist asked me what lowest level of pain on my pain scale could I tolerate while trying the next taper level. If after tapering down, say by 5 mg, I still had a pain of 2 to 3 or 4 when waking up for the 2nd day, I would bump my dose up 2.5 or half of the dose that I dropped for the previous taper. It really helped me to keep a daily log of my pain when waking up and my dose for the day. The pain would always go away fairly soon after moving around some and then taking the next dose of prednisone.

My rheumy gave me scripts for 5, 2.5 and 1 mg prednisone tablets which made it easier to drop by smaller doses earlier based on how I was feeling when it was time to try and taper to a lower dose.

Hope you have a pain free day!

I eat very little carbs or sugar. Lots of exercise. In good shape. We shall see. These last few days have been better and at the end of the week I will be done with prednisone. Stay tuned. 😀

Yes, I have done all 3 things. I need a tarsal tunnel surgery in my foot, but maybe will do it if I am ever off prednisone. MRI'S showed back issues that may be causing the numbness. But it seems worse since the diagnosis of PMR in April.

@macadoo
I developed PMR in February 2021, starting at 40 mg of prednisone and tapering to 15 within the first month. To date I am at 1 mg for another month and then hopefully off prednisone. I developed extreme fatigue after catching Covid July 1, 2022 (vaxed + fully boosted) and have questioned my internist and rheumatologist about it, Without any clear understanding. Did I develop long Covid, or is the extreme fatigue caused by the prednisone reduction. I Also have to nap 1 to 3 hours mid day. I just turned 68 and have never napped in my life! My Rheumy is also starting me on Methodextrate once I’m off Pednisone, for RA In my hands, (RA, which I tested negative for). I have always been active; hiking biking swimming, traveling, until PMR took over my life. I feel 10 years older and hope I see some improvement in the future. It’s very frustrating to constantly make excuses for why you can’t participate in things. Best of luck to you all.

Just read a really good article about people with Long Covid getting help from using Low Dose Naltrexone. Unless you are using opiates for pain relief, I don' t see how it could be a problem. Ask your Rheumy about it. This is brand new (for Covid) so do your own research.

I had been on prednisone for over a year and half, but gradually tapered off last spring/early summer. The fatigue hit me hard, and there were days at work where I was fighting to keep my eyes open. I have also been having major issues with my asthma. My doctor started me on hydroxychloroqine before I tapered off of the prednisone, but when I hit that 5 or 6 mg dose, it felt like it wasn't doing anything. My Rhematologist explained that I was dealing with residual pain from being on the prednisone for so long. Apparently, it takes at least 6 to 9 months and maybe longer for your body to adjust after being on Prednisone because it needs to re-learn how to produce adrenaline and other body chemicals. She tried adding Celecoxib, but it did absolutely nothing for me, so we stopped. Then we slowed my taper a bit and she added Diflunisal and Tylenol Arthritis to the mix. This helped a lot and I have now gotten to the point that I no longer need the Tylenol. I also stopped taking my nightly dose of Diflunisal, though I still feel it a bit in the morning until I take my morning dose. I should also note that I am an MGUS patient (the earliest stage of multiple myeloma) and during my bloodwork, it was discovered that my ferritin (stored iron) was low, even though the iron in my blood was normal. I now receive ferritin infusions which has helped not only my fatigue and anemia, but also slightly relieved my pain and helped with my breathing. I don't know if any of this information can help anyone, but I hope it will. God bless.

Welcome @ajbonett, Thanks for sharing your experience with prednisone and PMR. It sounds like you have a great rheumatologist. Are you still taking a low dose of prednisone?

I had severe fatigue before diagnosis with Giant Cell Arteritis, caused by the disease and called anemia of chronic inflammation. It went away when I started prednisone 40 mg. I just got off it. I was down to 1 mg prednisone, then my Rheumy told me to take .5 mg every other day until I finished the pills. Most of the people I know who have caught COVID complain of severe fatigue so I wouldn't be surprised if that's what's causing your fatigue. Prednisone gave me lots of energy. Now that I'm off it, I'm back to normal levels. PMR and GCA are self-limiting diseases and eventually go away, but they leave a lasting impression. I will never forget the pain and limitations I experienced with them, and I'm careful not to overdo it anymore as I don't want a flare up. Wishing you the best.

No. I took my last dose in August. I am steroid free except for a short dose to help calm my asthma after a bout of respiratory virus.

That's great! Hoping you stay in remission.