My husband has had PMR for over 11 years now. He had got down to 5mg of pred for maintenance and his specialist was happy for him to stay on 5mg.
8 weeks ago he started aching all over (bilateral). After having a blood and urine test, he was told he had a virus that was attacking his joints and there was nothing they could give him. He thought he might be having a PMR flare, so he went up to 20mg of pred, but soon came down when it didn't make any difference to his condition. The main thing to add is, he can't sleep at night from the pain, but when he gets up and starts moving around and working on our house, he feels so much better. Then when he rests after a long day of working, the aches and pains come back and the cycle starts again. The not sleeping because of the aches and pains is a huge issue with his health as you can imagine. He takes a sleeping tablet, but still cant get past 2am. So what would be your advice on how to handle this problem please. Any help would be much appreciated.
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I would really expect a raft of tests to get to the bottom of this. Eg. Bloods, x Ray, MRI scan at the very least. Something is clearly going on. Has he been tested specifically for Rheumatoid Arthritis for instance? He needs to return to his doctor ( with you) and insist that they get to the bottom of it. Perhaps a diary of symptoms would assist the doctors? I hope you solve this soon.
Thank you for your reply. We have recently changed our doctor here and she seems to care a lot more about Paul's condition. She has asked to go back after she's studied all his history and the symptoms he has now. So cross fingers she'll get to the bottom of things. Your input is much appreciated, we'll definitely write a diary of his symptoms to help the doctor.
What you describe is typical of some different inflammatory rheumatological conditions - spondyloarthropathies. Two am is earlier than is typical for PMR - but absolutely usual in ankylosing spondylitis in particular. I know a few people who have had a diagnosis of PMR for some years that was changed to AS at a later point. It can even mimic the symptoms of GCA!
I wonder why/how they used the blood tests to then use the old get-out of "it's a virus". If I hear that - I cynically think they aren't prepared to admit they don't really know.
Thanks for your reply. I've looked at the symptoms of what you suggested, it seems like it's mainly to do with the back. But that is one place he doesn't have pain.I know what you mean about the old get-out, "it's a virus". Because they say there's nothing they can do. But hopefully his new doctor might have some answers and do more tests
There is axial spondyloarthropathy - and that resembles PMR more. I can't remember exactly but the one friend who travelled from Kent to Leeds to see Sarah Mackie when the local rheumies were fighting without helping her did have more general pain but it started early in the night as you describe. Do ordinary pain killers have any effect at all?
I've just had a look at axial spondyloarthropathy and it does resemble his symptoms. No, ordinary pain killers don't touch his pain. I got the doctor to prescribe him tramadol/paracetamol, to be taken only at bedtime. It may help him sleep longer, as in past 2am, cross my fingers and toes.
Hi,Just an update and would like some advice please.
Since my last post 18 days ago, my husband slowly came down on pred. Only to find he became incapacitated, I had to shower and dry him, dress and undress him, pull him up off the sofa. He needed me for absolutely everything and on top of that, he was in so much pain, he couldn't sleep for more than a couple of hours.
Saturday before last we had to meet with a couple of our friends, who happen to both be doctors. They have known about him having PMR for the last 11 years and that he had got down to 5mg of pred. After looking him over and hearing his lasted ordeal, they both said that he was having a massive PMR flare. When I told them that 20mg of pred didn't do anything for him, they said that he should take 40mg the next morning. By the end of the next day, after taking 40mg, he was so much better and by the 3rd day, 85/90% better. We went to see our local doctor and she agreed with the dosage.
We went back today, so she could organise an appointment with his rheumy. She said that they were so far behind with appointments because of the virus and he probably won't be able to see a rheumy until after our trip to UK, late June until mid July. Normally the whole of Spain shuts down for the month of August.
I am hoping you guys could give my husband a plan for coming down on the pred. Because the chances of him seeing a rheumy won't be until October/November probably.
If it were me, I'd use one of the slowed tapers with 5mg drops down towards 20mg - though he could try the 40mg for a couple of weeks until he's feeling pretty good (these things are relative) and then try 35mg straight off and see how he gets on. That is what you woud do with GCA for example. Then maybe 30mg - but using a slowed taper over 3 to 4 weeks gets you to the same place and probably more comfortably.
What would concern me is whether he has developed large vessel vasculitis - and the extended higher dose of pred will have masked the signs rather. But if you can't get to see a rheumy, you can't get to see one. But a set of doctors HAVE seen it and recognised a flare of whatever it is, Same here in Italy - some places you can't even find a restaurant in August!
Hi,Thank you so much for the advice, much appreciated.
Just one quick question. After he's managed to get down to 20mg (depending on how he feels of course). He said that the decrease has to be very slow after that (10% drops) How long do you advise him to stay on each drop down?
We always say 3 to 4 weeks, to be sure it is enough still. It depends a lot on whether it was all due to just overshooting the dose he really needed or whether the flare is due to increased disease activity and he was so bad it really could be that so you can't assume where he was OK before will still be right, When did the symptoms start to resurface? The last time I had that sort of flare my quads ached after going for even a relatively short walk on the flat and it really didn't dawn on me for weeks because there was nothing else at all.
That's great, gives us something to aim at. He knows he's probably in for a long haul.Funny you should mention about your last bad flare. Paul pulled his left calf muscle really severely last October. And hobbling about put more pressure on his right leg. His foot exploded in pain and his leg had to be put in plaster for 3 weeks. Then followed with 2 more calf pulls. And to top it all off the special glove he was wearing for carpal tunnel syndrome, stopped working and he couldn't sleep for more than a couple of hours a night because of the pain going from his wrist to his elbow and upto his shoulder.
He had the operation for the carpal tunnel and this only solved the pain in his hand. This was when he was told he had a virus. He could work all day without too much problems. But as soon as he stopped, he said it was the worst ever pain he'd been in. So maybe you are correct, this all could have started maybe 6/8 months ago.
If the pred did not work at 20mg it does seem that the problem is not PMR. Personally I would chase up his doctor and say something needs to be done to help. They can’t just dump him and say sorry nothing can be done. Doctors do work on the theory if people do not come back everything is OK.
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