I thought I only had GCA and after 15 months of prednisolone I got down to zero on 11 September with no GCA flares. Now two months on, of no tablets still no flares but I have such stiffness. If I sit for any period I stand and walk like a cowboy (almost bandy!). Mornings I lift legs almost wincing to put on socks or stooping to pick up slippers and pulling tops off , over my head,is an effort with discomfort in shoulders . Generally I feel older than my 65 years and less energy than use to have.
I am hoping some-one can reassure me that this is either the body recovering from the GCA illness or this is some post effect of 15 months of steroids and that I do not have PMR!
Experienced views of PMR experts welcome or those who have had GCA and been off steroids for several months. Thank you.
Written by
DevonMichael
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Sorry - but it sounds horribly PMR-ish to me. Especially since it took a couple of months to manifest.
PMR can be a symptom of GCA - all depends which blood vessels are affected. The high doses of pred for GCA are more than enough to remove any signs of PMR so it doesn't appear until you are down to failry low doses. There are a lot of people for whom 1 or 2mg pred is plenty to keep the symptoms at bay - and my suggestion would be to try maybe 5mg for a couple of days and see if it helps. If you pounce quickly you may avoid a proper flare and avoid having to go to a higher dose. In fact, even a couple of mg might be enough.
To get off pred even for GCA in 15 months is very very fast.
Oh DevonMichael, it does sound as if PMR has occupied the space that GCA had vacated! Your symptoms sound horribly familiar. The characteristic walk and the painful pulling tops off over your head. What rotten bad luck!
What does your Rheumatologist say? Or is this all very new?
I do not have the scientific knowledge to understand the relationship between the two diseases, if in fact they are two diseases. It may be that the whole autoimmune disease thing is not done with you yet. I sincerely hope that I am wrong. However, you have beaten it before and will beat it again. Please let us know what happens. Try not to get too down. I am sure that your upbeat attitude carried you through before and will do so again.
I am sure you must be disappointed to have symptoms after coming off prednisolone. I am currently in the same situation after reaching zero in mid-July. I took prednisolone for 20 months, so for a bit longer than you. I think for both of us it has been a fairly rapid reduction. You may be interested to read my two previous posts about my experience after completing treatment for GCA.
I think you should make an appointment with your doctor asap. I expect that you will have tests for inflammatory markers and if these are elevated it would suggest PMR. I just don't know enough about steroid deconditioning and how it can be distinguished from PMR.
I have been left with quite bad pain and stiffness after coming off prednisolone, and I did have some symptoms when I was tapering the drug. I was told by my rheumatologist at the end of July that in his opinion I do not have PMR, and steroid deconditioning was mentioned as a cause of my symptoms. I was referred for physiotherapy and discharged to GP care. My GP has dismissed my suggestion that I might have PMR, as my inflammatory markers are not high. She says I have been reviewed by an expert and has declined my request for a short trial of 15mg/day prednisolone.
I had my first physiotherapy appointment last Monday and I will have two sessions in the hydrotherapy pool this month. At the physiotherapist's suggestion I have bought an exercise bike which will be delivered on Monday. So, I will give exercise a go!
I was a fast reducer too , making club-zero in a year. This resulted in similar pain/stiffness as you mention. Had many blood checks since and given assurance it is not PMR so just take painkillers as prescribed by GP. Assume this is just the legacy from GCA which claimed one eye before being diagnosed. Sorry can't be more positive, but at least I can still drive with one good eye! Good luck with the pain/exercise regime.
Reading your post has made me realise once again how fortunate I was to get a prompt diagnosis of GCA thus avoiding problems with my eyes. It seems that you have been experiencing pain and stiffness for a long time since completing prednisolone treatment. What painkillers have you been advised to take by your GP?
Hello again Labradorite, Just ordinary old paracetamol [once or twice/day] helps a bit, but never defeats it totally. I do have other complications, like arterial sclerosis which put me off doing much exercise mind you & some heart murmur has been discovered lately too, all of which complicates things as you can imagine. I used to find swimming in the nice warm leisure-centre pool was a big help, but that is no longer an option sadly. You are not in North America as your nickname suggests are you by any chance? Only ask out of interest as I spent 12 years there doing interesting things like X/C-skiing which was great. This will surprise TooSore who also commented but I actually enjoyed the cold white stuff, even shovelling 10 tons of it over the winter from the driveway!
Thanks for getting back to me. First, in answer to your question I live in the UK. I was wearing a silver and labradorite bracelet when I joined the forum, hence the name.
I am reluctant to take painkillers every day over a long period of time, but on bad days I do take up to a couple of doses of paracetamol although, like you, I have found that it doesn't help that much. I never take the maximum recommended daily dose. At night before going to bed I have started taking ibuprofen as I think it possibly helps with pain and stiffness first thing in the morning when I get out of bed. I don't sleep well because I have pain in my legs and shoulders and I have to sleep on my back.
I am sorry that you are now having to deal with the added complication of other health problems and I do hope you are receiving good care from your GP.
Are typical over the counter pain medications helping? Muscle relaxers? Is the pain and stiffness worse in the morning or after sitting for a period of time? Those are good indicators whether or not it's PMR. In the meantime, heat may help. I find it's good for aches no matter the cause. Although many find cold helps, I can't bear it particularly with the cold bast of winter that arrived this weekend.
I was on prednisone for 5-1/2 years for PMR & then GCA, so dose as high as 60mg at times. I got down to zero 7 months ago after 15 successive months of blood tests showed low inflammatory markers and rheumy and I agreed I seemed to be In remission. Since then I have been plagued with joint pains in knees, hands, feet. I have gone back to rheumy several times, had x-rays and blood tests that ruled out RA. Rheumy continues to think it is all pred withdrawal, and to me it doesn’t feel like PMR did. Rheumy says he had a patient who had been on high doses for months (not under his care) who took almost 2 years after tapering to zero to finally feel normal again. I suggest you try to get periodic tests for inflammation unless that was not a reliable indicator for you in the past. Also as TooSore said, if you find paracetamol or NSAIDS relieve the pain, that’s also an indicator it is not PMR.
One more comment Devon. I just noticed that it took 2 months after stopping prednisone for your stiffness and pains to come on. That was exactly my experience also. I felt quite well and energetic for those 2 months and then the pains started. Interesting. I keep looking for what might have been different for those 2 months and I can't think of anything that was.
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