Using the DSNS method I will be down to 4MG very shortly, in a couple of weeks. So far I am doing ok, not in any pain as such, just a bit stiff first thing in the morning, but able to do walks if a little slowly. Went walking for an hour today, and it was lovely to be out and about again after the cold weather we have been having lately. I was diagnosed with PMR in October 2017, so nearly 4 and a half years. Will I need to have a check on my adrenal glands when I am on 4MG or should I wait until I go down another half a MG first. Wondering also if I should stay at 4MG for a while or carry on down after a couple of weeks. Thanks everyone as I feel I am actually getting somewhere at last taking in slowly. CRP was 12 and ESR 2 when last checked not long ago.
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Purplegloss
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Many endocrinologists won't consider doing a synacthen test until a dose of 3mg - it is more likely to provide a reliable result. I think it is Sheffield Jane who had had a test at 5mg and it was not good, by 3mg it was improving greatly.
If you are functioning reasonably well and you aren't suffering "deathly fatigue" I'd be in no hurry for a test. Nor would I be in any hurry to start on the next 1/2mg. Be a tortoise not a hare
Yes quite right. Very deficient, poor response at 5 mgs, well within the normal range at 3 mgs. I was subsequently diagnosed with GCA and the Endocrinologist wants to see me when I get to 5 mgs again. I was impressed with him, I think he’s being thorough.
Do you mean you got diagnosed with GCA when you got down to 5mg? I was thinking perhaps wrongly that if you get into year two and are reducing you might get by with just (!) PMR.
Like Jane, I was diagnosed with GCA-LVV 3 years after my PMR diagnosis. However, my Rheumatologist wonders if I've had GCA since the start - she saw me for the first time more than a year after my GP made the PMR diagnosis, so wasn't there at the beginning. They are difficult conditions to predict their course - she likens them to a 'chaotic Lorentz Waterwheel'! (You can find illustrations of that on YouTube.)
Thanks for your reply PMRpro I will stay at 4MG for a while. I do feel ok except for a little light-headed feeling the last few days. I don't seem to suffer with fatigue, and don't sleep during the day at all. usually sleep ok most nights, but occasionally I am awake for a couple of hours during the night. A little bit stiff if I sit still too long, but no pain as such.
3 mgs actually, just glimpsed freedom and boom!Possibly stress, my second daughter and beloved grandsons wet to join my eldest and grandchildren by emigrating to Australia. GCA is closely related to PMR and a significant percentage do go on to develop it. Although I had got down to 3 mgs I had constitutional symptoms, not the typical head and jaw claudication of temporal Arteritis. Luckily my Rheumatologist arranged an ultrasound that showed abnormal arteries in my armpit.
It is because there are only really a few arteries you can access with u/s, the temporal artery, the brachial (armpit) and subclavian. And any of them might be inflamed - as well as other arteries in the trunk
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