I'm finally off Pred after starting at 50mg back in Aug '21 for a crippling PMR attack. I took my final (hopefully) 0.5 mg about three weeks ago. However, I'm now often feeling very slow and lacking in motivation to do much at all. "Brain dead" would be a good way to express it. This is not the old me! I can't seem to find the drive to do the things I used to enjoy. It's all too much bother for no real gain. I often go back to bed during the day because I'm bored! I know I can expect a period of 6 to 12 months of "pred recovery" but is this "dead feeling" normal after getting off these infernal tabs?
I live in an old house near the beach in Australia and it always needs work on it but I just can't seem to get the drive to get stuck into it. Add to that, two weeks ago I had cataract surgery in my right eye and that would add to the "stress load" placed on my somewhat deficient adrenal system. Add to that further, within two days of of my final 0.5 of Pred my ages old persistent right hip joint started playing up again. It's painful to walk and occasionally wakes me up at night. It never arose while I was on Pred, but its here now. Panadol and diclofenac kill it for about 48 hours and then its back. I speculate that if my adrenals were up to scratch, this would not be happening? But bear in mind, this hip has been x-rayed, ultra-sounded, cat scanned, injected and physioed more times that I can remember. And they never find anything! It's put down to "minor arthritis and wear and tear". If this is "minor" I hate to think what major arthritic pain is like!
But overall, it's the lack of motivation to do anything that's driving me mad! I do enough to get by and only if it has to be done. Is this lack of interest in anything at all normal at this stage of "post Pred"?
You mentioned adrenals , and I would say that their sluggishness is probably accountable for your lack of ‘get up and go’….. As you say, it can anything between 6 month to a year for them to back to full function. Just a matter of time and patience really.
As for arthritic pain and minor wear and tear - welcome to another world of joy… 🤨 you can get Flexiseq in OZ via the big A online shop [or elsewhere], might be worth a try…
There are a lot of doctors who think because they see an apparently normal hip x-ray that there is no OA damage and pain - not so. Someone can have a good x-ray but disabling pain while someone practically bone on bone has only minor pain. But many doctor won't hear the patient's side and think they are exaggerating. The other alternative is bursitis - doesn't show on an x-ray but can be excruciating, That would fit with it not having been present with pred although they should have seen it on MRI - if they were looking for it at least.
I also fight the "can't be bothered" - but it isn't too low pred in my case. On the other hand, I doubt I have any adrenal response to boost me ...
I forgot to say - I doubt adrenals have anything to do with the hip problem. But do bear in mind that it is only just over 18 months and PMR is rarely over that soon - even in men. It does happen and maybe you have been lucky but well under a third of patients are off pred so soon.
You sound mildly depressed to me. I recognise what you describe. Your world was turned upside down by this disease and now that you believe that it’s over, you are perhaps wondering who you are ? You mention being a highly motivated individual, driven even. Possibly the reason your immune system started attacking you, or one of them. Perhaps you need a bit of help to redefine yourself, in a group or one on one. The place you have worked hard for, sounds enviable. It really is time to enjoy the fruits of your labour. Somebody or something needs to lead you back into the sunshine again. I’m sorry if this all sounds a bit woo woo for your taste but you’ve had all the practical replies. The next step is there for the taking BrunswickV8. X
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