Last week I was finally after 5 years told by the consultant that I was cured of GCA. My blood tests were perfect and my recent DEXA scan was good. I have been off pred since August but remained on Methotrexate which I was told I could stop together with Alendronic Acid. As you can imagine, I was thrilled. However, I have pain in my shoulders which is worse in the morning. It woke me up at 5 this morning. Is it likely to be PMR or am I being alarmist?
I posted last month news that I was off pred to encourage others that it was possible. Now it seems as if I might have been precipitate!
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PenelopeVita-Finzi
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Oh dear! I wonder if a very small maintenance dose of Pred would stop this in its tracks?
It certainly sounds suspicious being bilateral pain. A number of patients take 1 or 2 mgs to keep the last vestiges of the disease at bay. Perhaps this relatively harmless strategy would work for you?
Unfortunately you aren’t “cured” of GCA - it just goes into remission, so it’s possible it could be that - and of course that’s always our first thought!
You have to think through this logically - firstly could it be anything else? Have you done anything to cause aches? Gardening, cleaning, moving furniture?
Do you have arthritis? My shoulders and upper arms are painful first thing in the morning until I get them moving with gentle exercise. If there’s a possibility it might be arthritis then maybe an X-ray required.
Whatever, you need to give it a few days to see what happens.
If you’ve ruled out other options, then you should get inflammation markers checked (assuming yours were raised initially).
Have you still got any steroids? If so, you could try a week at 5mg (or more if enough to hand) to see if that makes any difference. A short course won’t do any harm, and you can just stop them without a problem.
Don't assume it’s GCA or PMR - but if it continues it needs to be checked. Please let us know.
He may well be correct in that it’s gone - but as I said we never say cured - just “in remission”. Fortunately in the case of GCA it doesn’t seem to re-emerge as frequently as PMR, so fingers crossed.
But do get your arthritis checked - it is a bit difficult to know tell the difference at times, and as I said mornings is worse because your shoulders/arms have been still (or relatively still) during the night and everything seizes up.
About half of people who have GCA also have PMR. Between 10% and 20% of people who have PMR also have GCA. They can have these diseases at the same time, or GCA can develop after PMR.
Doesn’t say PMR develops after GCA - and although it can, I’m not sure it’s very frequent. I think I’ve seen one person on here it happened to.
Possible me Dorset Lady GCA Dec.2014 Sepsis 2015 and in 2016 PMR raised It's head went undiagnosed until 2018 rheumy insisted It was withdrawal symptoms because my markers were not raised!! G P sorted me out eventually
Or PMR was part of your GCA - and 2 years to the day later you were down to low enough a pred dose to let it poke its head above the parapet. GCA argues less than PMR - maybe that's why I have PMR ...
Lol. It’s funny my blood markers were never raised with GCA but my CRP was when diagnosed with PMR. My rheumie saw results from my monthly blood tests and phoned to find out what was going on. At that point my hips and shoulders were causing me a lot of pain.
It might be - or it might just be the left-overs of your body readjusting to life without pred. You will have been on 1mg at the end for a while - that is often enough to keep things under wraps and then it takes some weeks or even months to resurface.
Do you have any pred left? You could try a week or so to see if it helps - I see you haven't, that;s a shame. Do you have a really kind GP who'd give you a script for a couple of weeks-worth?
And really - he should know better. Not cured, in remission. Not quite the same thing at all. If you are really lucky in remission forever - but most autoimmune disorders can revive if you are unlucky.
I do have a very good GP whom I plan to go to see if the pain doesn’t go away. Thank you for your reply.
Hi Penelope
Have you tried a simple pain killer for your shoulders to see if that improves it?
I’d be very reluctant to go back on the Pred after doing so well getting of it & the additional drugs.
Is it both shoulders, identical pain on both sides? Try some heat or one of the Anti Inflammatory Gels but l’d be inclined to see your Doctor & get an X-ray of your shoulders because while you’ve been on the Pred your Arthritis may well have got worse but you’re only noticing it now you’re off the Pred so they may be able to treat it with other Meds.
Paracetamol doesn’t relieve the pain, naproxen helps. I will try heat. I agree that one is very reluctant to go back onto pred. Thank you for your help.
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