I have had a pmr diagnosis for about 10 weeks now. When I get up in the morning, generally, I feel fine, but as I start to do jobs, I feel overwhelmed by fatigue and fuzzy headedness, enough to make me feel slightly off balance. About 4 - 5 hours after my pred, my head clears, and I feel a lot more positive. I am also experiencing frequent cramps in my feet, mainly at night, so I am having to continually lift my toes up to prevent them from going into full spasm, but it also can happen in the daytime. Another thing is a deterioration in my vision on the lower dose of pred. I got down to 9mg 10 days ago, but 3 days ago, my vision was definitely blurry, and I was finding it difficult to knit and read. The pain in my shoulders also increased, and I needed to take codeine to get any relief. I went back up to 15 mg yesterday with good results. My plan is to stay on 15 for at least a week and then maybe go down to 10mg.
Any insights would be appreciated
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jennycat
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If you are fine at 10 - don't hurry to go lower for now. In our experience, trying to go below 10mg after only 10 weeks really is pushing it. However - are you also moderating your activity as well as taking the pred? It doesn't cure anything - it is managing the inflammation and the actual disease process is ongoing in the background making you feel as if you have flu.
It does sound as if you are overdoing it in the mornings - and some people do react like that to pred. Some people even took pred before bed so they slept through the woozy effects pred had on them.
The cramps - try taking magnesium supplements or getting magnesium oils of sprays for topical use. Or use Epsom salts in the bath or as a foot bath. Pred makes you lose magnesium through the kidneys and you can become depleted.
Both pred and autoimmune disorders can cause dry eyes - usually noticeable because your eyes feel gritty and often produce lots of runny tears. Eye drops really help there but you must use them regularly 2 or 3 times a day. And too much screen time makes that worse. If you wear glasses you may find your focal length varies a lot and moving your specs and down your nose often helps and is cheaper than getting new specs as it can vary back and forward for some time.
I had to give up knitting - though I did have PMR for 5 years before getting pred!! Maybe had I had pred sooner I could have carried on!
thank you, this all helps. I am still finding it hard to moderate my activity. A big part of me is being fit before, and having my fitness level drop is really hard to cope with mentally. I might try my pred before bed tonight. I guess even though it will only be about 14 hours from my last dose I still take the full 15mg?
We were all in the same boat - you would be amazed how many here were very fit and active pre-PMR. You have a new normal - and don't try to fight PMR because it will always win.
Pred did that to me and it was related to dose level. I am one of those that PMRPro says had to take it at bedtime to get through feeling groggy and uncoordinated when Pred hit its peak in the bloodstream. It gets better with dose reduction but it’s a pain if that the way it affects you.
My eye muscles were affected by Pred such that changing depth of focus was slow and my glasses prescription kept changing. I put up with it to avoid spending a fortune on glasses often. My GCA symptoms wasn’t general blurring and focus, more visual field drop outs, whole field grey outs and sparks of light.
Not sure it will help you, but I, amongst many others, had to learn the hard way about slowing down my activities. I guess it must happen to just about everyone who gets diagnosed with PMR.
It is definitely very frustrating, but, as PMRpro says, you can’t fight it because PMR always wins. It’s a matter of being patient , then more patient, then more patient again! AND you need to give yourself loads of tlc.
Pmr will go when it’s ready, and it doesn’t like being hurried up.
As has been suggested once you get back to 10mg - then stay there for a month or so.. really is no rush after such a short time - and maybe introduce 1mg drop every couple of months.
And rethink your activity levels… we know it’s not easy, but a necessity.
Lots said already, and as prpo says you are never alone here. One other possibility could be to take your Pred at 02:00 which means it's in your system before the nasties come out to play around 0400-04:30 every day which has worked for many of us here. Maybe worth trying if taking it before bed keeps you awake all night. That's assuming you aren't on EC (Enteric Coated) Pred.
Hope no one minds if I jump in here? I have been on pred for PMR for nearly four years now and have managed to get down to 6.5mg. Over the last few months I’ve had issues with pain and fatigue but these are hopefully beginning to settle.
Current issue is total exhaustion every morning. I drag myself out of bed soon after 9 and take my pred after breakfast (10 ish). I’m then completely exhausted, can’t really focus on much and am generally a pain to be around 😟
Come 6pm and I’m a different person, more lively and interested in life. I have to force myself to get to bed around 1am.
Does anyone have any thoughts on this please? I doubt it’s timing of pred because wouldn’t it then have been worse on higher doses?? Is it more likely adrenals struggling??
I’ve always been a night owl but never as bad as this!
No thoughts at all - but if you find out, do tell me!!! Not that I'd go as far to say I was LIVELY in the evening but having been almost asleep in front of the computer at 5-ish, when I get to bed soon after 10, I lie there wide awake until 3am some nights. Last night it was 5am ...
My husband and family say I should get to bed earlier but all my life I’ve been a night owl and often lie awake as you describe - so there seems little point in going to bed ‘early’ for the sake of it.. 🤷♀️
Hi NOP I'm sure you've tried/thought of this in the past but do you think taking your Pred earlier would help. I used to take mine around 02:00 ish and didn't have any morning problems. Strangely now I'm off it altogether I tend to be more fatigued/tired in the mornings now and that's not adrenals as my last Cortisol count came in at 750 something..
Might be worth trying though, just in case it works. We've only just moved so I'm thinking/hoping it's just the hassle/strain/work involved with the move and setting up the new house. At least the PMR has shown no signs of appearing again. Most boxes now gone!!
I have been a morning lark all my life. When I got to the sub-8mg level I could not get going in the mornings; it was a real struggle. Can’t say I was therefore blessed with an evening rally but perhaps that’s because I never was an owl. I had to put up with severe morning sluggishness until my adrenals were consistent arrivals at the breakfast party.
At first I thought ‘no’ on both counts, but then I realised that the OA pain in my right shoulder, wrist and left hand has been much worse since reducing pred, and I’ve been using ibuprofen gel at night, as well as 15mg codeine (although I’ve been taking the latter for nearly ten years). This could be contributing to my difficulty in getting going I guess? Although I doubt it’s the whole explanation..
Thanks, good idea, maybe I’ll try reduce the gel x
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