Hi everyone. I read your posts every day but haven't written one in quite a while. I started this PMR journey November 2016 (starting at 20 mg of prednisone). Just recently I was able to I taper from 9 mg down to 7.5. I'm a little stiff at 7.5, but the main difference is that I'm so tired. I'm guessing that this is the adrenal gland thing that many have talked about.
How long does this usually last? I realize that everyone is different, but I'm wondering what type of experiences people have had with this tiredness as they start to taper down?
Thanks to everyone for this wonderful forum!
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judyb100
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4;30 am in UK here but I’m up because our dog was howling to go out. Now sitting with a cup of tea listening to the early spring dawn chorus as the reward.
Anyway, I’m on 6.5mg and felt dreadful on 7.5 and 7. Sooo tired, weak and sad. I really felt like I didn’t have enough Pred to get through the day but my adrenals were still napping. It was quite disappointing to feel so feeble again. I feel much better after nearly 2 weeks on 6.5mg but still not as much go juice is available and I think my naps are about to get a bit longer again. I didn’t havr PMR so no stiffness comments to give.
Yes, sometimes I also feel sad and hopeless in the mid afternoon to early evenings. I just wait for it to pass. Not had this until about 7mg. On higher doses it was more a highly strung anxiety thing.
Very interesting. I was feeling down and sad for a few days this week. This surprised me because I don't usually feel that way. I didn't think to blame it on the prednisone or tapering, but that may have been the problem!
I was diagnosed in Dec 2016. I take DR Pred at 10PM at night and usually wake with good energy and no stiffness. I ran into a combo of muscle aches and joint pains, not PMR pain, tapering 6-5MG 38 day DSNS TAPER. I also began feeling more weakness at the end of the afternoon until early evening. Keeping moving at a slow pace and eating dinner seem to help that slump.
I had stopped my morning exercises because of the aches and pains and thought I would have to go up on Pred. My Dr. recommended staying on 6 for a while and resuming a less strenuous routine. It has helped. I'm now embarking on a second attempt at the taper.
I also assume it is my adrenals still sluggish from a 16 month nap.
I'm similar except that I feel weak and tired starting around noon. It's so hard to know what to do. I hate to cut back on my exercises because I'm trying to avoid more osteopenia, but maybe I could stay at 7.5 with less exercise and see what happens.
Split the exercise into smaller packages - and it isn't a permanent thing anyway. Try resting BEFORE the fatigue hits - 10 mins then may achieve more than waiting to collapse and needing longer to recover.
I am at 7 mgs and the tiredness is extreme. I also get rare little bursts of energy, so maybe I’m coming through, it’s been a few months. I completely surrender to it and have a completely restful day or two before an event. I do seem better at rising to an occasion now.
Yes I have, but it’s horses for courses. You may have a different experience. I was as lively as a cricket yesterday. I have had 2 hours sleep already today.
You are correct in thinking it the adrenal glands.
One question, when you say ‘Just recently I was able to taper from 9 to 7.5mg” - how quickly did you do that taper and one step or what? Depending on how you did that may account for your stiffness - you may have gone past your optimum level without realising it.
As for sparking the adrenals, unfortunately it takes as long as it takes! I felt whacked out for almost a year on and off - between the taper of 6mg down to 3mg despite using a slow taper and only dropping 0.5mg per time. But then I did start on very high doses.
I have tapered to 7.5 three times, dropping 0.5 at a time. The first two times I used DSNS but I still had a flare and had to go back to 9.0. This time, I tried my doctor's method, which was to drop by a half mg. from 9.0 down to 7.5. I stayed at each level for 3 weeks. It seemed to be working until now. For my first week at 7.5, I felt tired and only slightly stiff. By my second week, I started to feel stiffer and also tired. It's so confusing and hard to know what is going on! I'm not terribly stiff, but I certainly recognize that old PMR stiffness when it comes back.
It's interesting that it took your adrenals almost a year to come back to life. I guess I shouldn't worry about a few weeks. Actually I started getting super-tired at 8 mg and then it just got worse at 7.5.
I've had 2 flares in the last 9 months and what you describe reminds me of how my flares developed. 3 weeks at each 0.5mg drop seems quite a short time and you say you feel stiffer and the tiredness got worse at 7.5mg. Do you think you might have gone below the lowest dose to control your symptoms just now?
I had tapered at 0.5mg / month and reached 5.5mg, but have gone back up to 8mg to try and get things under control (stiffness, tiredness etc and elevated blood levels). After 1 month on 8mg I'm starting to feel the benefit. GP and Rheumy have suggested another month at 8mg before I consider tapering again at 0.5mg / month - DSNS.
I had been blaming my sleepy adrenals, but the Rheumy said my CRP and ESR levels confirmed a flare. I'm lucky that my blood results seem to agree with my symptoms - 'normal' when I feel OK and high when I feel low!
What I continue to learn is that this will take as long as it takes.
Me: PMR since May 2016. 1 flare at 12 months and another recent flare. 8mg pred.
I also need to learn that it will take as long as it takes! I should probably go back up to 8.0, as I felt pretty good at that level. It seemed that I should be able to drop down to 7.5, but I'm probably not ready.
It doesn't matter HOW you try to reduce - you will not manage to get below the dose your body and its PMR need to manage the inflammation. When you struggle at a given dose repeatedly, it is worth accepting that and stopping just before that dose and sticking there for a month or two before trying another tiny reduction. It often works.
Good advice. I think I'll go back to 8.0 and stay there for month or two. I can almost handle 7.5 now, but not quite. I'm somewhat positive, because my stiffness at 7.5 is much, much less than it was last year when I tried getting down to 7.5. So maybe I'm slowly on the right track.
Yes. This is so helpful. Similar though not identical symptoms.
I'm also curious how the fatigue at these adrenal challenging doses is different from the fatigue people experience in early days due to autoimmune issues.
I didn't really have this fatigue/weakness early on. I think, perhaps, because I went from sudden onset of stiffness and fever to Pred & relief within two weeks. But just a guess on my part
There are so many posts about fatigue that I ignored when I was a newbie. I was wired on Pred and felt pretty good. Then I began to see a pattern and feared the coming of the fatigue. I wasn't a lucky outlier, I just hadn't gotten there yet.
I have a suggestion FWIW. I've been thinking for a while that it would be helpful to see patterns and and comparisons if when we post about our condition/symptoms, in reply to someone else or starting a new thread, that we indicate when we were diagnosed, what our current dosage is. when we take our Pred and what kind we take.]
Maybe you can avoid the fatigue! I don't know if everyone gets it.
Good idea. My details would be 11/2016, 7.5, Prednisone 8:30 am. I take the prednisone that late because I have to take thyroid pills first thing in the morning on an empty stomach and then I have to wait an hour until eating. I used to take the pred much earlier, because I wanted it to kick in and reduce my morning stiffness. Now I'm actually much better. Now the mild stiffness I feel first thing in the morning is not much worse than what I feel after taking the pred. This made me think that I might be taking too much pred., so I thought it might be easy to drop from 8.0 to 7.5. So confusing!
Simple soul me, and sometimes I think it helps to explain things in a slightly different way! Especially if you’re trying to explain to someone who doesn’t have PMR, otherwise they just don’t “get” it!
Snap judy, I have to have that gap between Levothyroxine (125 microgrammes) and Pred and feel better than I did when it was Pred first with Yoghurt ( thanks Poopadoop). After some brighter days I am beginning the Dsns to 6.5. Top symptom fatigue, dealt with, plus the sadness by going to bed, for about 90 minutes and sleeping.
Thanks for the understanding about taking both pred and thyroid medicine every morning. And congratulations on being down to 6.5!
My unscientific theory is that my hypothyroidism caused my PMR. I've had the thyroid problem for 40 years, and thinning bones can be a side effect of both hypothyroidism and thyroid medicine. Almost three years ago I fell and broke my hip, so I blame my bone weakness on my hypthyroidism. A year later I came down with PMR, so I blame that on the stress of breaking a hip. The hip actually healed up very well, but I'm stuck with the PMR!
I was diagnosed in 1984 after the birth of my second child, Graves Disease, off the scale Thyrotoxicosis, rapid weight loss and exopthalmic goitre. Then PMR March 2016. I wonder about this second assault on the Adrenal Function.
If you have the tendency to develop 1 a/i disorder you are more likley to develop another. That is known - but not why, though obviously your immune system isn't as healthy as it might be...
Jinasc did suggest this some time ago, and a few of us did it for a while. But it’s remembering! One way is to put in your profile - start date obviously would stay the same, and probably time, it’s just people would need to remember to amend dose.
I googled circadian cortisol levels yesterday and got a page of images from different studies. A few showed increased cortisol levels after snacks and even more after dinner. But I couldn't judge the validity of the claims or the status of the authors. Still interesting to me because of the timing of my fatigue and how it lifts after dinner.
For that matter, a bit of alcohol seems quite effective. I keep it to 1 oz. I'd like to find a substitute.
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