I wondered if you can give me any insight into the early days of being off pred and into the next stage of recovery. I have been off for 2 months my bloods are ok. In the last two weeks I had a nasty viral cough that dragged me down. Then I drove to gosport to see my son pass out one day and back the next. Roughly 4 hours each way with traffic. All weekend I was wiped and very stiff and thought I would have to go back to pred. But plenty of sleep and I woke up this am a 100 percent better. I am sure that this is just a warning sign to slow down. I just wanted to know what others experiences are in the early days of being off pred. I guess the reality is I am still managing PMR but without steriods. I know we all think that once off then we are cured but I can confirm we aren’t! Any insight welcome as always.
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JulieR2
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I fear another reality is that there aren't many people on the forum to tell you their experience post-pred!
DorsetLady, jinasc, sparklin, Celtic, Kate Gilbert come to mind but the latter two are rarely here now.
Remember that it is felt it takes about a year after stopping pred altogether for ADRENAL function to get up to speed properly - and that sort of day out will need a boost of cortisol too. Your muscles aren't back to fitness - you don't have big days out like that often and a 4 hour drive in traffic would make most people our age tired, you did it 2 days in a row.
If it were me I'd be worried if I still felt like that - I'd pop a bottle of prosecco if I felt good after a good night's sleep!!!
As said, it can take a year for everything to settle back down again, and become fully functioning. So we aren’t back to ‘normal” - whatever that may be - for some time, plus of course, depending on how long your PMR or GCA lasted - a few years older!
I would say your viral episode probably affected you more than you realised - or maybe expected - followed by the stress of driving and seeing the pass out parade was just too much (no matter how proud you were) - so no wonder you were wiped out!
But the good news is, after rest, you didn’t need to resort to the little white pills! You may have a slight residue of PMR lurking, but we are apt to always think that’s what it is when very often it’s not! Like PMRpro I would be inclined to blame the adrenals more than PMR!
So just be aware that you may have to still pace yourself for a while - but certainly not to same degree as before!
I have been off Prednisone for about 1.5 years after 4 years and 3 months of PMR. Can’t say that I feel all that well most of the time. I seem to have arthritis almost everywhere, especially in my back. Cold and damp drag me down and also make me feel very fatigued. After finishing the Prednisone, I asked my Dr. If I should have my adrenals checked, and she said “not necessary”. While she recognized the disease, she always made light of the slow way that I was tapering. I don’t think that she comprehended how painful PMR can be. I also had almost chronic attacks of Vertigo, which seem to have settled now. I just turned 78, so old age may be part of all this. I was fairly active before and during treatment, but had to stop Chair Yoga since stopping Prednisone, although managing a light Aerobics class still. Just don’t have the energy for the Yoga. Housework is difficult, as well. Fatigue and lack of energy seem to be my major problem. Not good news for you, but everybody is different. I plan to pursue some testing with the Dr. to see if we can find a reason for the fatigue...
Have you access to a different GP? To request a synacthen test for adrenal function - it isn't exactly big bucks medicine but it would answer one question.
There is a real shortage of doctors where I live, and I am fortunate to have one. I have been with her for 16 years and I also have other health issues. As I said, I am planning to raise the fatigue issue with her again and the back pain. One has to insist for things the second time, it seems. Thanks for your reply though.
But the question is whether they are working adequately - so you are on enough to do more than just exist. It is possible to function on quite a low amount, but for anything that requires a bit more of a boost the reserve isn't there and you just can't manage more.
I'm going to chip in here - but please be aware that my case is very unusual! I was only on pred for 8 months - started in July 2018 and stopped at the beginning of March 2019. My PMR symptoms disappeared quickly after starting pred and they never really returned (apart from a few "pred-head" episodes - but that could be due to my age - and some bouts of extreme tiredness). About a month ago my hands started to feel stiff & sore in the mornings and I was going to start taking 1mg pred again to see how it went, but before I started taking it again, my hands seemed to sort themselves out. I even had quite a stressful work trip around the same time, but that didn't seem to set me back.
I get very tired one day a week when I take alendronic acid (for osteoporosis), but apart from that, all seems to be well. I wonder if I was mis-diagnosed and never had PMR in the first place; if that's not the case, then I can't express how fortunate I feel to have got off so lightly with this terrible illness (fingers crossed, touch wood, etc!).
I wish the same for you as well, Julie. If a good night's sleep can help so much, that's a good sign, I think. Remember the time only pred could help - if sleep can have the same affect now, then things are better than they were!
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