Hello. Wondering if this fatigue is something I have to work through, or if it's a sign I need to increase prednisone?
Was doing well with .5 mg taper until I tried 4.5, then had a flare, back to 7.5, then quickly to 6, and now have been at 5.5 for 3 weeks. No pain, but Not functioning well at all, so tired and fatigued, can't get anything done. Only occasional stiffness.
I'm due for blood test next week, and see rheumatologist the week after.
Appreciate any thoughts.
FYI- my taper has been to drop .5 every 9 days. If I start to feel bad within the 9 days, I go back up .5 mg and wait 9 more days and try again. It has worked well to get me from 12 to 5.5.
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Meg1711b
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Fatigue could be a couple of things - either your tapering has been too fast, or your own adrenal glands are not working correctly yet, or a combination of both!
I felt very tired between the doses of 6mg and 3mg - think my adrenals were particularly sluggish, no wonder really been on Pred long time and high doses.
You say your tapering has been okay, but I would still say you have done it too quickly. Suggest you stay at 5.5mg for a month to let things settle down, which hopefully they should by then. Then reduce by 0.5mg as you have been doing, but using a slow plan which is easier on the body.
I use one of my own that takes about 4/5 weeks to complete from old dose to new dose. Then if all okay I just go straight on the next reduction. If at any time I don't feel well or know I will be under stress I just stop for a week or so. I've been doing that from about 7mg with no problems, now just reached 0.5mg.
Thank you for your suggestion of staying at 5.5. I did so, and am starting to feel better now. ESR is trending down to 18, and CRP is holding at 9.7. Will stay at 5.5 for several weeks before even thinking about reducing.
I can well-relate to your situation since I'm on a similar trajectory with steroid tapering and flare-up / withdrawal symptoms. If it helps (and with the usual disclaimer that I'm not a health professional, only speaking from personal experience and received wisdom from this forum):
Apart from the inevitable fatigue as a result of PMR, there seems to be an additional symptom of fatigue (in my case, often 'deathly'..) when reducing the steroid dosage either by too much, too quickly, or both at once. It would appear that this is due to the body's adrenal glands not being ready yet to 'wake-up' and produce enough natural cortisol to replace that of the preds: and which would seem to be dependent on many factors. PMRpro is an expert in this, and I recommend that you follow her posts on the topic.
From what I have learned, it seems to be a Catch-22 in terms of getting the balance right between reducing the preds to a low-enough level to manage the worst of the PMR symptoms: and the possibility over-shooting in terms of the rate or amount of reduction (or both) - which can lead to similarly painful and exhausting symptoms. Ultimately, and despite the best research / wisdom on this topic, the process seems to be a matter of trial-and-error despite following the best-laid of tapering plans (e.g. DSNS).
As for the (very commonly reported in this context) experience of fatigue, all I can recommend from personal experience is to 'roll-with-it' and don't try to fight it since you will only put pressure on yourself by doing so, and increase your stress levels: and which by all accounts, can in turn exacerbate the PMR symptoms (another Catch-22)!
As many have said here, and I have also learned, PMR is truly a Life-changing illness. This may sound overly dramatic (since the symptoms aren't visible): but patience is key in both dealing with the symptoms and managing our expectations of ourselves in the process.
Thanks, Mark. Appreciate the reminder of the Catch-22 scenarios, which are intricate puzzles to decipher even when not suffering from fatigue, brain fog, and borderline depression. "Rolling with it" again, and feeling better now.
Thanks too, Meg. As we know, the course of PMR / treatment options for it are not an exact science at any level, so it's good to compare notes / experiences to make sense of things and not feel alone!
As you say, feeling 'down' (in whatever way) is inevitable with PMR, and quite understandable.
I'd say exactly the same as DorsetLady. 1/2mg every 9 days is too fast, you haven't time to work out if you are still at enough pred to manage the PMR but, above all, this isn't enough time for your body to keep up and start producing its own corticosteroid again. The adrenal glands don't need to make any above about 7mg - so once you are below that they have to wake up. This is the stage at which you need to go even slower. One top PMR rheumy in the UK keeps patients at 5mg for up to 9 months to allow that process - it seems to work for many of his patients. The fatigue is probably that - not the PMR.
Thank you for suggesting my situation was likely adrenal related instead of PMR related. It gave me the courage to stay where I was at 5.5 and ride it out. I am feeling better now, but will stay at 5.5 for several weeks to hopefully allow my body to get more stabilized, before thinking about reducing again. Labs were good-showed ESR at 18 and CRP at 9.7.
It seems to me that Dorset Lady's advice is eminently sensible. One of the troubles with PMR is that it is not the same for everyone, but, having tapered down to 7mg in half mg steps, I could, in no way have managed this in 9 day intervals.
My experience has been to wait for at least 4 to 6 weeks (maybe longer), until the body has settled down, and got accustomed to the new dose, before contemplating a further reduction. Even then the first week or so of a new dose has proved a bit "rocky".
As to the fatigue, I still take a daily break after lunch to get a half hour/hour rest. That certainly helps!
Meg you've already had wise advice from the others. To be reducing by 0.5mg every 9 nine days, especially around the 5mg level is more than likely responsible for the tiredness and fatigue you are now experiencing, and these symptoms could be forerunners for a return of actual pain and stiffness in the future if you don't slow those reductions now.
When I was struggling at that level, my highly recommended rheumy with a special interest in PMR increased my dose to deal with the flare and when arriving back at 5mg again he kept me there for some 6-7 months. Then when I started reducing from that level again I did it in 0.5mg decrements, tapering over a 7 week period to each new dose. The long stretch at 5mg and the continuing very small reductions gave ample time for my adrenal glands to get up and running again and at the same time avoided the risk of any shortfall of natural steroid being available in my body. Think of it as sort of tricking the body into not noticing the withdrawal of Pred.
Thanks, Celtic. I'm sticking at 5.5 for several more weeks, and will consider the multiple month suggestion. I certainly needed to hold at 10 for many months, so it makes sense that I might need to do that again.
What's been happening to your sed rates during these flares? My doc likes to take a sed rate just before each dose drop... if it's normal he allows me to taper 1 milligram... I just take her to 4 milligrams from 5 milligrams. this being said I am always concerned on my high stress days since I know that there is a certain degree of adrenal deficiency at risk. It is important to understand that when you drop 1 milligram while you are on 5 milligrams ....this represents a 20% drop in your total dose.... when deficient My major problem is fatigue as well as a subjective feeling of dullness.... there is also greater muscle pain in the mornings which dissipates rather quickly.... presumably the sed rate will tell me whether there is residual PMR inflammation.... bottom line.... each patient is different. I also use Herbal inflammatory medications such as curcumin.... I think it helps. Rhodiola rosea may help but it can cause adrenal depletion and I would not recommend it without the oversight of your rheumatologist or endocrinologist.
Thanks for your reply. My SED rate is good and getting better. Last 3 were 33, 24 and now 18. CRP was 12.4, 9.5 and now 9.7, so just below the high normal level of 10. My Doctor is now ordering these test every 2 months, which I find helpful. I consider myself a intelligent person, and I share the feeling of dullness, which has been really hard to accept.
Just be patient..5mg to 0 MG is a much longer "trip" than your earlier tapering at higher doses. Difficult to rely on the subjective symptoms of adrenal fatigue vs pmr sx and therefore, objective testing may become necessary as recommended by your rheumy or your endocrinologist. Lately I have started holy basil 400mg bid...an adaptogen that is touted to support healthy adrenal function... we'll see, I see no downside. BTW I'm now surviving on 4 milligrams aiming to get to 3mg after two weeks on 4mg. I may take an extra milligram on high stress days. It's always good to think like an adrenal gland. Good luck on your tapering.
Meg, thanks for this post. I would say rest is the first response to fatigue, not upping your steroids! But I'd also check out your blood glucose levels. A deathly tiredness was my first signal of the onset of type 2 diabetes.
Thank you for your suggestion as to rest being the best response. That's what I have done, while keeping the pred at 5.5, and I am finally feeling better again. I can't believe its the end of May as I have essentially "lost" much of the last 6 weeks. My mom was also concerned about diabetes when I complained of 1 day of frequent urination. Glucose was fine 6 months ago, but I appreciate your comment and will continue to be watchful of potential symptoms until next full blood panel is done.
I was diagnosed with PMR 7 years ago, then along came GCA three years later, I had no problems with fatigue in particular until I was diagnosed with type !! diabetes nearly two years ago. I think Kate Gilberts recommendation is worth thinking about.
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