Chronic Fatigue while tapering Prednisone for PMR

Posted by macadoo @macadoo, Aug 6, 2022

I’ve had PMR since April 2020. I started on Prednisone 20 mg/day and at 18 months, I had gradually reduced to 7 mg/day. When I tried to reduce to 6.5 mg/day, I had a terrible flare up so went back up to 10mg then tapered down to 7mg where I currently am. For the past 6 months, I’ve had terrible fatigue that has gotten worse. I’m extremely tired and feel like I have a hangover (I don’t drink) most of every day and need to ‘nap’ for 4-6 hours/day.
I’ve been tapering prednisone very gradually…going down .5 mg every six weeks. When I get to 6.5, my flare ups and intense pain returns.
My rheumatologist wants me to start Methotrexate. I’ve been avoiding taking it, but I will give in and start it in a few weeks.
Has anyone had chronic fatigue while they are reducing their steroid daily dosage and found any treatment to help with the fatigue?
I appreciate any of your advice and experiences.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Between 7.5 and 5 I had major fatigue also. I am at 4.25 now and find the fatigue is lessening slightly. Perhaps challenging the adrenal gland to pick up the slack in cortisol production is a factor. I have been dropping the dose by 0.25 mg. every week or two but am ready to increase if fatigue and fuzzy thinking increase too much. With each drop there are a few days where I want to backtrack. I pay attention for symptoms of adrenal insufficiency and gca. I do miss the energy boost and lack of joint pain I had at higher doses of Prednisone. I think pmr did some damage to my joints and muscle strength during the two months before diagnosis and treatment.

REPLY

I felt that creeping fatigue for about a week or ten days when I tapered from 8 mg to 7.5 mg of prednisone. Went back to 8 because of debilitating pain returning and the fatigue lessened, too.

REPLY
@megz

I'm currently at 7.5mg and first noticed a slight drop in energy at 8mg, which I dismissed as a passing thing. The fatigue is worse now and my daily habit of doing something several times every day in the garden is feeling almost impossible right now.

The new tiredness is frustrating. And I've just noticed that my daily recording of blood pressure has all the wrong dates for the last week and I've had to change them. The brain seems to be fogging up as well. How usual is lethargy with reductions and at what reduction dose is it most likely?

Jump to this post

Maybe you are reducing too fast. I waited until I reached a good place and I felt relaxed and somewhat physically comfortable and then cut back and then took it easy until I reached a better place again. This isn't going to be an illness that you will get over quickly and it could be years. my advice would be, step back a dose level and talk to your doctor.

REPLY
@edwardh

Between 7.5 and 5 I had major fatigue also. I am at 4.25 now and find the fatigue is lessening slightly. Perhaps challenging the adrenal gland to pick up the slack in cortisol production is a factor. I have been dropping the dose by 0.25 mg. every week or two but am ready to increase if fatigue and fuzzy thinking increase too much. With each drop there are a few days where I want to backtrack. I pay attention for symptoms of adrenal insufficiency and gca. I do miss the energy boost and lack of joint pain I had at higher doses of Prednisone. I think pmr did some damage to my joints and muscle strength during the two months before diagnosis and treatment.

Jump to this post

The adrenals need to increase their cortisol production when 7 mg of prednisone is reached. The problem is you can't taper off prednisone too quickly because of the risk of an adrenal crisis. However, continuing to take prednisone delays the process for the adrenals to resume the production of cortisol.

Given that circulating cortisol regulates inflammation, it seems to explain why people have so many flares when they reach the 7 mg dose of prednisone. A low cortisol level also causes overwhelming fatigue.

REPLY
@bradninchgirl

Maybe you are reducing too fast. I waited until I reached a good place and I felt relaxed and somewhat physically comfortable and then cut back and then took it easy until I reached a better place again. This isn't going to be an illness that you will get over quickly and it could be years. my advice would be, step back a dose level and talk to your doctor.

Jump to this post

I'm reducing at a rate of 1mg every 6 weeks as recommended - .5mg every 3 weeks - and have no pain, only slight aches in the first week of each reduction. I'm not reducing too fast. I think the new tiredness may be from getting lower in dose.

REPLY

Yes! That drop from 8 to 7mg of prednisone. I got cocky thinking I was going to be off this stuff by Christmas. Yikes what a flare up at 7mg. Everything hurts and the fatigue. Getting out of bed in the am is a slog. After a week of this I went back up to 8mg. Next drop will be to 7.5. I may start going 1/2 for the drops now.

REPLY
@barracudacool

Yes! That drop from 8 to 7mg of prednisone. I got cocky thinking I was going to be off this stuff by Christmas. Yikes what a flare up at 7mg. Everything hurts and the fatigue. Getting out of bed in the am is a slog. After a week of this I went back up to 8mg. Next drop will be to 7.5. I may start going 1/2 for the drops now.

Jump to this post

Yes, I'm doing .5mg reductions every 3 weeks and have no pain at 7.5mg. I reckon a 1mg drop might tip me over. The fatigue is increasing so it can happen without a relapse.

REPLY

I have been on prednisone since last year (and some before that). I have been battling chronic fatigue for quite some time. I can never get an answer to help resolve it. its always take more iron and test in 6 months. I am having to take a nap almost every day.

REPLY
https://www.hopkinsmedicine.org/health/conditions-and-diseases/underactive-adrenal-glands--addisons-disease

It seems you can expect adrenal insufficiency to some extent after treatment with prednisone for PMR. Not clear at what point you might need replacement hormones. Your docs should be aware of this possibility.

REPLY
@art43
https://www.hopkinsmedicine.org/health/conditions-and-diseases/underactive-adrenal-glands--addisons-disease

It seems you can expect adrenal insufficiency to some extent after treatment with prednisone for PMR. Not clear at what point you might need replacement hormones. Your docs should be aware of this possibility.

Jump to this post

I've been fighting this disease for over 3 years now. I've had several flare ups along the way but am finally down to 3 mgs.Prednisone and 400 mgs. Hydroxychloroquine a day. Rheumy wants me to stay on 3 mgs. for a while as it was when I was on 2 mgs. that flare ups occurred. Lately, however, I have had such chronic fatigue that I don't know if it is my adrenal glands trying to function or if it is my age...I'm 81 today!! Just stripping the bed, or taking a shower leaves me exhausted. It's just not like me. I'm usually very active. Kind of scary.

REPLY
Please sign in or register to post a reply.