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Prednisone

AndrewB

Senior Member
Messages
119
Location
England, UK
"Hi Andrew

I don't know if this is of much use to you, but at least it will put the dose into perspective. I had a bout of polymyalgic rheumatica in 2005, which is pretty painful. It took me a while to realise that it wasn't just a bad ME bout, but when I saw my GP he put me on a high dose (25mg!!!) to start, and that solved the problem within a couple of days. The condition is long-lasting though. I was quickly reduced to 15mg within a week, then tapered slowly down to 10mg. I have been on that more or less since then, tapering down to below 7.5 mg when the symptoms return. But at those doses, I didn't get any mental effects at all. Quite the opposite - it even seemed to help the ME. I gather that there can be long-term side effects - putting on weight, losing calcium from the bones, thinning skin, man boobs etc. but none of them affect me, and I gather that it is only really for doses above 10mg. I have read reports of patients with ME going on low doses (around 5mg) just to help with the ME, but don't know of anyone in that position. A friend did have a large dose a few years ago as you did, to help her go on holiday (!), and she said that it took her well over a year to get back to her ME normality.
I have had a few months without any steroids - tapering off very very slowly, but the pains in the muscles came back along with the exhaustion (that is, in addition to, and rather different from the ME fatigue) - so that is why I am back on them at 10mg, and will start to taper off again in a couple of months. I can't get over what a big dose you were had, given that just 25 mg really sorted out the intense pain of my PMR. The best of luck with your recovery"

Hi graham,

i had to see my GP today to get treatment for insomnia and a chest infection. Anyway, at the time he prescribed prednisone in the hope it would give my body a jolt in the right direction, those were his words.
and for the first two hours it did, but the mental distress was really too unpleasent to go through.
that experience had made me refuse ever to take it again. and having done research on the drug, its not just M.E patients who cannot tolerate the drugs, in varying doses there is a section of people who will have a psycological reaction to it. had it just made me irritated or anti social, id have hung in there with it, but i got very strange and hugely disturbing pychosis from it.
 

xrayspex

Senior Member
Messages
1,111
Location
u.s.a.
I felt sort of nuts when tried flonase a couple years ago, that is lightweight I suppose compared to prednisone. the first couple days it was great but then I felt too hyper and aggressive, took a while to get over. don't think I lost any friends that time :)

I just got dx with sjogrens, so when I got into flare up last week of pain in spine after moving my doc suggested trying a burst of prednisone, 20 mg for few days, I only take like 1/4 tab then half then 3/4 so dont think i ever quite got to 10mg a day but it helped but then I got a bad cold I had been exposed to which is interesting cus i rarely get sick. when I went off of it the pain returned with a vengeance, so I am expermenting with homepathic (not quite that low) doses like less than a mg a day , and I feel more social and also less pain. I have heard some people find a way to make it work, I dont know if I would be safe from osteoporosis (already have osteopenia) and roid rage on a teeny dose, will keep you posted, it may not work. I have slept alright so far surprisingly and don't feel so crappy if don't get as much sleep as i want like I normally would. I also don't crave carbs quite as much as I usually do. I have been putting on weight this year already tho for unknown reason so do not want to blow up on this stuff more. I don't like how it effects my bladder tho, am hoping on tiny dose that will calm down, bladder had just gotten better from irritation from another med was on this summer but stopped that had ibuprofen in it which I never want to take again.

Maybe m.e. people, esp MCS ones, the key is baby dose, it would be great if that helpd and was sustainable!