Does anyone have an opinion or a personal experience that increasing the pred dose will relieve the fatigue that accompanies this disease? Logic would seem to indicate that it would in that the higher the dose the greater the suppression of the immune system, though PRMpro thinks not. Would be interested to hear other opinions on this issue.
Does increasing pred relieve PMR fatigue? - PMRGCAuk
I can only comment on my own experience, which is that I was tired all the time before I was diagnosed with GCA and PMR, still TATT when I was on 60 mg of pred and still TATT now that I'm down to 10 mg. So pred doesn't seem to have affected my exhaustion, but it did deal with the pain and stiffness, so the exhaustion is certainly easier to bear than before diagnosis. I also know that at some point when I reduce to below 10 mg, I shall have to deal with the adrenals struggling back into life which by all accounts also leaves one extremely drained and exhausted.
Hello, I’d say yes and no. Before GCA I had a weird combination of tired but wired. 60mg Pred knocked me for six and this didn’t get much better until about 20mg and better still at 10mg. However, although I don’t have the fatigue which I can’t describe, of a body in deep distress with an uncontrolled systemic problem I’m certainly not normal by a long way down at 3.5mg. I suspect this is because the actual mechanism by which my body is attacking itself is still there and not fully in remission. I think perhaps that’s what PMRPro is talking about.
Unfortunately I'd personally say Pred had for me little or no effect on the fatigue or 'deathly fatigue' (DF) as many here call it. I always appreciated PMRpro's analogy to 'us' being like 'batteries' - you do too much - or 'overdo' things and then you simply must rest and 'recharge'. I have found this to be a very reliable way of getting some control over DF or at least some predictability about when it might next inconveniently 'descend'. While a high dose of Pred might temporarily 'mask' your experience of fatigue - it still (I found) lingered in the background ...
My OH (male) has had a very positive experience on pred, it 'cured' his fatigue, low mood, brain fog, cognitive difficulties... He felt like himself again - he was always (until about three years ago) very positive, active and sharp. However when he drops the dose he is bad on day three, picks up again on day four and fine again after that. He was 100 miles an hour on 60mg! He gets up early, (5am on 60mg, 6.30am on 18mg..) does the dishes, all his emails, makes me coffee in bed (never used to!) and is generally extremely sharp and focussed. He reached his limit though a couple of days ago, and he's had to go back up to 20mg as he crashed and burned.. (well not quite that dramatic!) But all symptoms returned. Hopefully after upping to 20mg today he'll be feeling better. But it was 8.30 before he awoke this morning. He's better than yesterday, but we shall have to see how the next few days pans out.
Hope this helps.
I have been advised to reduce only by 1mg per month to avoid the yo-yo effect caused by big reductions and the need to go back up to the high start doses.
When I reduced down to 5mg a day, I was in so much pain that I have had to go back to 6mg. Am now waiting for an appt to see my rheumatologist again.
At the monent I am in constant pain
However you reduce, however small the steps down, nothing will get you to a lower dose than "the lowest dose that manages the daily inflammation as well as the starting dose did) - that is what you are aiming at, not a relentless reduction to zero pred. Once you feel worse at the end of a reduction step than you did at the beginning you have overshot the dose you are looking for and you need to go back. NOT to the original high starting dose, the last dose at which you felt well and pain-free.
Provided you realise quickly you have overshot you will just need to go back to the last dose, but if you ignore it you will still have accumulated inflammation and constant pain. If you have pain, the recommended approach is to add 5mg to the dose where the flare occurred and see if that leaves you fairly pain-free. You can take that for up to a week or 10 days and drop back to there you were - not the dose where the flare occurred but 1 or 2mg above it.
Doctors all too often create the problems and flares by forcing patients to reduce without thinking and considering if the new dose is still enough. The original dose of pred cured nothing - you will need enough pred to manage the daily added inflammation for as long as the underlying autoimmune disorder is active. Which on average is between 5 and 6 years - this isn't a short-term problem. Although some people are over it in a couple of years that isn't common.
You know what I think. Pred actually has little to do with suppressing the part of the immune system that is causing PMR symptoms. It merely relieves the inflammation. The rest carries on in the background.
I still hit the brick wall of fatigue if I overdid it when on higher doses of pred. Just as I had pre-pred.
I can’t make my bed properly either and accept I have to ask for help, I also have a cleaner. With extreme difficulty I am concentrating on what I can do.
Had lunch today with friends and a my female friend has Osteoporosis, she cheered me up by telling me it was 6 weeks before she had improvement with Hydrotherapy, I have had 3 treatments and of course I expect it to improve immediately.
Tapering happily to 7 mgms so that’s good.
My fatigue went within a couple of hours of taking Pred. 40mg in August this year. Initially I was super charged, this level of energy did not last long.
However I’m now down to 10. The debilitating fatigue has never returned. I do get a bit more tired than normal if I over do it but it’s manageable. Just to note: consultant thinks I may not have PMR although an alternative ailment has not been suggested. My main symptoms were debilitating fatigue, inability to walk more than a few paces or stand / sit/ raise arms. So I guess it impacts everyone differently. Example:My friend gets complete brain fog @ 5mg, at 100mg for a different ailment I did not suffer from that at all ( as far as I’m aware) 🤯
I think at different levels the pred either helps or hinders!! I've had to increase it back up because of deathly fatigue - and it does make a difference - but I would probably have to go up a good bit for a very significant difference. When I was on a higher dose at the beginning I definitely felt more "normal" regarding tiredness. Without a doubt the fatigue is much more of a problem now than pain as the pred is seeing to that. But the fatigue - a whole different ballgame!!