Rheum says I may have PMR 3 yrs after GCA diag. - PMRGCAuk

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Rheum says I may have PMR 3 yrs after GCA diag.

Whittlesey
Whittlesey

Hope all are o.k. and having a good holiday. After 6 months of 1 mg for GCA, then hospitalized for dissecting artery 2wks ago, and pred increased to 10 mg,my rheumatoligist thinks I may have PMR.

Very painful, both upper arms, difficulty lifting them. See Dr. next week.

Upping pred to 8 mg as per her instructions. Bad pain.

Reading posts, here. Again good instructions on lowering pred.

Never had pain like this before.

Advice helpful.

Appreciate advice given.

All my best, wishing everyone health,

Best, Whittlesey

10 Replies
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PMRpro
PMRproAmbassador

If it is PMR it is unlikely 8mg will deal with the symptoms particularly well. The usual starting dose is 15mg/day to mop up the inflammation and then you reduce to find the lowest dose that manages the symptoms. This can take well over a year to get below 10mg, depending on the activity of the underlying autoimmune disorder that is the cause.

Unlike GCA, PMR is an ongoing underlying autoimmune problem that often lasts far longer than plain and simple GCA - because if you have GCA alone with no PMR symptoms it is not uncommon for patients to be able to get off pred in a couple of years. The Mayo considers it is possible to speak of "cure" in the case of GCA and say it rarely recurs. PMR, on the other hand, can last for years and second episodes may happen up to years after being able to stop taking pred - as opposed to a flare within a couple of months because of stopping the pred too quickly.

Some people find that using an electric blanket BEFORE getting out of bed makes it easier to start moving and once you are moving and able to stretch gently things improve. Also doing stretches in the shower is a good way to get moving. I don't know when you take your pred dose - but it needs to be in a single dose as early in the morning as possible. The optimum time to take pred to avoid morning stiffness is 2am - almost noone wants to get up then but I do know a few people who do that and say it makes a big difference. Many take their dose when they first wake in the morning with a sandwich they took to bed with them the night before and then settle down for another couple of hours - by which time the pred will have started to work.

Whittlesey
Whittlesey in reply to PMRpro

Thanks PMRPro. Usually take medrol in the a.m. now am taking 4 mg in the a.m. and 4 about 11 p.m. increased dosage seems to help a little. And yes, this is very painful. Thanks for the information. Will work w this.

Seeing the rheumatologist, end of the week and she may increase the dosage. Will work with that.

Some dread, on the prednisone -- but will take it.

This is muscular --- am I right on this ?

Thanks for your information and help.

best, Whittlesey

PMRpro
PMRproAmbassador in reply to Whittlesey

No, not muscular, just muscular symptoms. It is an autoimmune vasculitis just like GCA and they are linked in some way. GCA is a large and medium vessel vasculitis but in PMR it probably affects the microcirculation, the finest of the capillaries that join the arterial circulation to the venous one. It probably interferes with the supply of oxygen to the muscles which is why they become intolerant of acute exercise, not signalling they are tiring and then not recovering as fast afterwards. Research is ongoing into that aspect of PMR.

northants
northants in reply to PMRpro

If I have a appointment for early morning I always set the alarm for about 3 o'clock take pred with food and a drink then go back bed when I get up at 7-30 I can move easily. I think you have to work it out to suit yourself it takes about 3 hours for my pred to get me moving and yet a friend of mine says his pred kick in straight away also since taking pred he is painfree i have never been painfree but i can cope with the pain most days if not I take painkillers.

PMRpro
PMRproAmbassador in reply to northants

If the pred "kicks in immediately" either the effect from the previous day's dose is still there or it is a placebo effect. It takes an hour to get into the blood at all. It is much the same when people take a couple of painkillers and say the headache has gone 10 minutes later - the active substance can't have got there in that amount of time! You don't say what dose you are on - but if you have PMR pain you might be better with 1mg or so more. Be careful with painkillers - NSAIDs don't mix with pred, both can cause gastric bleeding on their own, together it is a far worse risk.

Hi Whittlesey. So sorry you are now having PMR symptoms after all you've gone through with GCA. I agree with you - the PMR pain is horrible, worse than anything I've had so far with Rheumatoid Arthritis or Osteoarthritis. Mine came on literally overnight. I couldn't raise my arms at all and had to roll myself out of bed. I found that a hot bath was the thing that helped get me going in the morning, but I needed help getting dressed even so. It was 15mgs of Pred which was the overnight miracle for me. The next morning I was totally pain free. After 12 months I'm down to 5mgs but not pain free. I don't think that 8mgs is enough for you in the early stages. Can you speak to your doctor about increasing the dose? Good luck with your PMR journey, and please let us all know how you are getting on. Angela

Whittlesey
Whittlesey in reply to Angela123

Hi Angela, thanks for your good and helpful information.

The increased pred does help. See rheumatologist at the end of the week.

Will try some of what you said. They sound very good and helpful.

And yes, I m having trouble raising my arms.

Thank you so much for these ideas.

Wishing you the best, and painfree,

Whittlesey

I have developed very painful arms like yours. I have been on pred since early 2011 and thought I had finally cracked it but after being on 1mg for two months, and planning to stop after Christmas I have so much pain in my shoulders and arms that I can only sleep if I take a large dose of co-codamol (prescribed by GP after knee replacements) before bed. I saw GP last week and am awaiting results of a blood test. The last thing I want to do is go back on to the steroids but I will take the GP's advice. I hae a rheumatologist appointment in February. A year ago she said I had no signs of polymyalgia - we'll see what she says when I see her next time! You have my sympathy - it is very very painful!

Whittlesey
Whittlesey in reply to rosalinda

Wishing you good luck, Rosalinda.

I agree I don t like upping the pred. I, too was at 1 mg for over 7 mos. And agree, if the rheumatologist wants to increase it will.

Wishing you all the best dealing with this and hope that you are pain free, soon.

All my best to you,

Lynn

rosalinda
rosalinda in reply to Whittlesey

Hi Whittlesey

Thanks for the sympathy! I upped the pred from 1 to 10 mg and am much more comfortable now, but after blood test the GP finds I am anaemic and he suspects some other inflammatory disease and I have today had another load of blood tests - all good fun isn't it!.

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