I'm 88 and am into my 4th year with PMR. Started at 20mg Prednisalone and many times have gradually reduced dose, even getting down to 4mg, but always had to go back up again with a variety of aches plus always deathly fatigue. I've been on 8 per day and was to continue at 8 until end of year. However I still have exhaustion, an assortment of minor inflammations, and very painful wrists. A sharp stab makes me yelp when I pick something up. I decided to take an extra 5mg which I have done for 5 days, reducing then by 1 per day to 9mg daily which I reach tomorrow. However, this doesn't seem to have made much difference and I now have diarrhoea too. I even thought I might have Covid, but Lateral Flow Test was negative. My favourite occupation is sitting in a chair staring stupidly into the middle distance and thinking of all the things I ought to be doing but don't want to.
Pred dose doesn't seem to have worked. What would... - PMRGCAuk
Pred dose doesn't seem to have worked. What would you do?
Your painful wrists may be due to several things like arthritis or tendonitis. You may want to try paracetamol to see if that relieves the pain if you haven't already done so but I would advise a call to your GP. If the diarrhoea doesn't improve you should mention this as well particularly if you know that you haven't eaten anything that may have upset your stomach. Staying hydrated is important for inflammation so keep drinking water throughout the day.I hope you get these problems solved soon.
Thanks 123-go for your suggestions. Re my wrists: as it is both that are affected, I have been thnking it is probably systemic rather than local, so most likely caused by the PMR. I'll explore the arthritis possibility though if it doesn't clear up. Funnily enough I've been drinking more water and tea than usual anyway this morning, as there was some interesting discussion about it on the BBC Morning Live. Confirmation of its importance.
I spend a lot of time staring into the distance thinking of all the things I should be doing, it is so much easier than actually doing them! Are you saying that the steroids are not helping the pain or that you have other ailments? Unfortunately the awful fatigue is probably due to you getting your adrenal glands back to work. This is an awful phase and all you can do is stick it out at one dose, don’t try and reduce. Going higher may get rid of the fatigue but you then will have to go through it again when you reduce. I think the diarrhoea is possibly due to something else. Also your wrists may be osteo arthritis. What does your GP say?
Thanks so much Piglette. Your comments and advice re adrenaline revival are most valuable. It's the fatigue that gets me down. But I think I will stay at 9mg when I get there tomorrow. That's just 1 above where I was before and I 'll stick it out and hope my adrenals pick up eventually. ...I'm tempted to go back to 8, but maybe 9 is wiser....
If your on 9mg your adrenals will be able to go to sleep again. They will then have to be woken up as you drop down below 7mg or so. I found 6mg and 5mg were the worst. I found it an effort to pick up the phone and as for dialling that exhausted me!
Ho hum Piglette! What you tell me is so valuable. I think I will definitely go back to 8 then.
How accessible is your GP.?I think another round of tests might be in order just to ensure that nothing else is going on. When I didn’t seem to be getting better after about your period of time, I was referred to the Endocrinologist to ensure that my Adrenal glands were working - you need to be below 5 mgs of Pred though. They were ok. I had a full body MRI scan and a head MRI, an Aortic Scan, X Rays various bloods and eventually an ultrasound scan of the head and neck done by a technician who was trained to spot GCA or Large Cell Vasculitis. That’s what it turned out to be. I needed an initial high dose of Pred 40 mgs and then was accepted for Tocilizumab. I continue to be treated with 7 mgs of Pred and Tocilizumab injections. I’d love to say I feel fantastic a year on but I don’t. For me it would be progress staring into space thinking of all the things I should be doing. The point is, if you don’t feel right maybe it isn’t right. Of course some people are unfortunate in that their PMR just keeps relapsing. Could you be trying to get off Pred too quickly? Are you familiar with the slow tapering programmes outlined in FAQs on this website? Just trying to bounce some ideas around. As I do for myself, all the time. Could your wrist be carpal tunnel syndrome or tendinitis? Could you have caught one of these horrible non-Covid viruses that are going round. I hope it lifts soon, whatever it is, for both of us.
I was most interested in - and sympathise greatly with - your experience Sheffield Jane. Yes I think I will ask for more tests. I certainly don't feel right. Our local (UK) surgery on the whole look after me pretty well, though I seem to have a different GP every time I ask for a consultation. I am constantly aware of the danger of GCA as my mother lost her eyesight with GCA.
I know the feeling my paternal grandmother lost her sight and my maternal great grandmother also. Although GCA was never mentioned I believe that it could have been because of the described symptoms. I think it is preferable to be over-cautious than to take a risk. I have regular eye health tests that I pay for (£40) I find it reassuring.
Not sure I'd worry too much - sounds awfully like me and I'm a tad younger ...
Thanks for replying PMRpro, specially at such a difficult time for you. I am much reassured.
That is how my PMR started with sharp electric stabbing pains to all my joints , i can clearly remember those early days of PMR. The Drs puzzled look when i was telling her my symptoms !That was my first time round with these pains ! I was put on 20mgs of PRED . Got down to Zero eventually with problems and had a short break from the PRED. But sadly it came back with lots of other problems. Again got down to 5/1.2 but had ro double the dose, its just yo yoing really/ My fatigue was so bad i could fall asleep all the time ! Think you need to get your dose sorted out it does not seem to be doing the trick. Maybe upping it slightly may help. Best wishes Viv🌷
Thanks so much for sharing your experience Viv54. It was very interesting -makes me think my painful wrists are indeed pmr and not arthritis. Good luck for your future.
Don't do it - last sentence!! At your age no-one is going to be surprised that things can't be done. Relaxing in that chair is what we oldies (I'm 82) need to do.
You'll probably find the aches and pains are more likely due to age rather than PMR (and it is so difficult to know if any of it is PMR at all).
Be kind to yourself. 💐
A sudden change in bowel habit should be checked out by your GP. But don't risk dehydration...get loperamide - an over the counter medication. Start with two tablets and then after any recurring bout of diarrhea take another one (up to 4 a day). If not improved in 2 days must go to GP.
Do take the good advice about steroid dosing. Slowly slowly. But there seems to be no way round the terrible fatigue before the adrenals wake up...I am in the midst of that...and it can take a year!!! I often yearn for the big doses that made me feel so perky.
I do hope you feel a bit better soon.
I agree that you should go back to your GP. Ask to see the one you want. Don't let them fob you off with that old age rubbish. Yes, you get more aches and pains as you get older, but GPs shouldn't just write you off as there will be a reason. Tendonitis is caused by inflammation. Mine responded to pred wonderfully and all my pain was gone, though now it's coming back even though I'm at 30mg, I don't know why. I've been offered a cortisone injection into my hip joint. The steroid acts locally I'm told and deals with only that issue. I think it's certainly worth getting further tests done on your wrists etc, there may be something they can do. Get some loperamide (imodium) it usually sorts out diarrhoea. But if not, see your GP as tummy upsets can be serious in older people.
Oh I sympathize and I feel for you Purple-Owl
Your experience mirrors mine. I'm 87 and have tried three times to taper but always failed at 7/6.5 mg pred. I have concluded that QOL is more important. I have increased to 10mg and will stay there . My lovely GP agrees and will keep a close eye. At the moment this is working well and I have a useful day with enough energy and mental interest to follow my pursuits of digital photography and very light gardening. It's definitely better than staring at the wall! I do hope things improve for you.
I have had some similarities to your complaints. I am 93 At one time I got down to 2-5 mg but had to go up to 5mg. I am now at 3.5 and holding. Have had PMR for just about 3 years (diagnosed) think I had it earlier than that I have accepted some of my comlaints as due to old age ailments. I accept the terrible fatigue cannot avoid it. However when I have a pain (s) elsewhere I take some Tylenol and rest. If pain is ameliorated somewhat then It i s not due to PMR. It has been very hard for me as an active, played tennis, competitive runner etc. to accept age limitations, but that is what I have to do and change my life accordingly. Sorry I annt be of help to you
almost overnight my wrists and thumb started hurting. Right worse than left. Going for xray to take a look and see if it can be determined what is going on. It is very painful and hard to use my hands. Good luck
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