Chronic Fatigue while tapering Prednisone for PMR

Hi @macadoo, I had fatigue with PMR and GCA, and it was caused by anemia, which is common with these autoimmune disorders. It's called anemia of chronic inflammation and it resolved with the proper dosage of prednisone. Have you been tested for anemia? I see that @jabrown0407 also asked you that. With PMR, I had no energy to do anything, but a high dosage of prednisone for Giant Cell Arteritis gave me lots of energy.

Hi Teri,

Yes, I've had blood work and no anemia. Seems that at 6.5 and 7.0 mg prednisone...my current dosage, my adrenals are trying to kick back in and causing most of my fatigue. I started at 20 mg prednisone over 2 years ago.

Thanks for your message.

My blood was checked and I'm not anemic. So seems that it's my adrenals trying to restart as I've tapered to 6.5/7.0 mg prednisone daily. Thanks for your message.

It’s been 2 1/2 years for me and this is my second time tapering. I’m down to 1mg and unfortunately I’m having pain again. The pain is in my shoulders and hand. In the beginning I had it in my hips too. I am tired all the time. I walk a lot and push myself to get in 20 miles a week and ignore the fatigue. I get home by 3 and nap. I’m convinced this condition causes the fatigue but unless my blood tests show my sed rate and crp are elevated, I am not going back on these steroids. This is a nightmare condition. I am already treating my bones with Reclas infusions. Hope you feel better.

I know what you mean I have managed to get down to 4mg but some of the pain is back but I can't stand the steroids don't even no if I'm doing the right thing but I don't want to up my tablets again hope you feel better soon x

Hi. I have had 3 sets of labs and my inflammation levels were high. I began prednisone. Then after 2 weeks at 20 syarted reducing dose. Had 2nd set of labs levels reduced by 20 points. Continued reducing dose. Pain levels went way up again. I was down to 10 myself. Restarted the 20 mg dose and now at 12.5gs. Symptoms have returned. Bad pain and exhaustion. Just got 3rd set of labs and I am almost where I was at the beginning. So I need to go back up to 20 maybe??? Before they got the labs this am, they told me to go back up to 15. Hmmmm. Your point about the fatigue....I first experienced chronic fatigue/EBV in the late 80's very debilitating. It's not being tired...it's much worse. I have found PMR fatigue to be that bad. It's awful and depressing. Pain only adds to the fatigue. These symptoms knock you down for sure. Here's to healing for all! ♡

go around
2nd set after

I have lowered my carbs and sugar. Many people have posted on this support group and also the PMR SUPPORT on Facebook that an anti inflammatory diet has helped them. I had to ask my Rheumy about it. She then agreed it was a good thing to do.

I’ve been lowering my prednisone and am down to 1 mg. Next week I go “cold turkey” with none. The thing that has really helped with pain has been physical therapy concentrating on my neck, arms and shoulders. I also take chair yoga via zoom. I hurt so much less after the PT and zoom classes. I would never have been able to taper off without them. If necessary at night I take the 8 hour arthritis Tylenol so I get a better night’s sleep.

Hi, njtodctode, If I had to say anything about your tapering history, it would probably be what else can you get wrong? For starters - you stayed on your initial dose of 20mg for a whole two weeks! Uh, uh, uuuh!! And if I'm reading you correctly, it sounds like your inflammatory markers were up there pretty good. Most of us stay on our initial starting dose at least twice that long - depending on our symptoms and blood tests. At two weeks, the prednisone hasn't had enough time to clear out all that inflammation that has been building up in your system. So, you went ahead and lowered your dose meaning less "ammo" to work on that inflammation. It's no wonder you started having more pain! Yes, I guess you could try going back to 15mg, as suggested, and see how that works for you. If, at 15mg you're still in pain, you'll know that's not enough, and you should ask your doctor if you need to go higher. Once you get to a spot where you're no longer in pain, you need to stay there for a while until you're feeling really good. Then, you would start tapering down gradually, maybe 1 mg every 3-4 weeks, until you get to 10mg and are feeling good. But never go down if you're feeling pain.
Then you have to start slowing it down a little more. All of this can take awhile. But that's how you stay out of pain, and hopefully that's how you eventually get yourself off the prednisone. It takes a lot of patience. Good luck to you.

Hi
I laughed at your opening line. In a good way. I agree with you 100%. I didn't go down because I wanted to.but that was what was prescribed. I didn't know anything about PMR or.it's existence. So I am following docs orders. I realize now late into this that I have a doc and PA focused on the pred dose. It neverade sense to me...now I am paying for it. BUT I have learned a lot here. She is gunning for me to go on methotrexate or something else on top of pred. I had a hard time.when I tried methotrexate in 2015 for RA flare. So what do you think of using that as well? I have not seen many people here talk about meds like that. Thanks for the laugh and the info
I agree with what you are telling me. Now gotta make the doc see....I moved here a year ago so we are new doc/patient. M