Withdrawal symptoms on reducing pred from 10 to 9 mg
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I started reducing prednisolone from 10 mg to 9 mg 4 days ago and am finding that my whole body is tingling. Am aching a bit and have started to get fatigued again. Has anyone else had this tingling sensation? Is it a withdrawal symptom from the pred? I would be grateful for any advice.
0 likes, 32 replies
EileenH jan21306
Posted
In the 4th and 5th posts on this thread on the forum:
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
you will find my version of a very slow reduction programme that I and quite a few others have used to avoid this withdrawal discomfort. A similar concept is being used by a consultant in the NE and he also finds it works well.
You don't say how long you have been on pred (sorry if you have said in earlier posts but I can't remember all the posts I see). The longer it is the more sensitive many people become - but here it does sound more like that than that the new dose is not enough for the PMR symptoms to be managed.
jan21306 EileenH
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EileenH jan21306
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The reduction I suggest COULD be used from the starting dose immediately but you do need to hang about a bit at various doses because otherwise you will overshoot the dose that you will need to stay at and never know what it would have been. There is no point being on a dose that doesn't control the symptoms - that way you have all the disadvantages with none of the benefits and - as I say - might as well say I'll put up with the PMR.
There, it dependson how bad it is - I had it mildly for 5 years with no pred because it was not diagnosed until I ended up immobile and in agony. It was uncomfortable and quite hard work but it can be done. I was a freelance translator working from home so I did an aquaaerobics class every morning in a warm pool, often followed by a short spell in the sauna or steam room. Having done that I was more flexible which allowed me to move more - the more you can move the better it becomes in an improving spiral. But I had to start again every morning. Some people found using an electric blanket BEFORE getting out of bed and a warm shower allowed them to get moving better. It wasn't until I got bursitis pretty much all over that I eventually went onto pred (took 6 months to get there too).
We suspect that a VERY good way to deal with PMR is hydrotherapy in a nice warm pool - but getting that in the UK if you haven't got RA is pretty much impossible! Has your doctor thought of trying a different form of pred? I have been on 4 different sorts and only had awful side-effects with one sort (Medrol), prednisolone as used in the UK was OK, the weight I had gained before diagnosis redistributed to pred-associated places (midriff, back of the neck and face) but not much else. With the form I am on now I have lost 16+kg in weight, the muscle wasting has gone and my skin and hair are back to normal as is my cholesterol level - Medrol side-effects all disappeared.
Your GP might be willing to try Lodotra for you - that is what I take now - but the 2 people I know who take it in the UK are getting it privately. It is approved for RA though so can be got.
jan21306 EileenH
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EileenH jan21306
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A few people have tried taking pred at night - it meant their side effects happened overnight and the days were OK. Everyone is different.
Oregonjohn-UK jan21306
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jan21306 Oregonjohn-UK
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davidmelville jan21306
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EileenH davidmelville
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davidmelville EileenH
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Mind you I got my cum upance with Naproxen, a most unacomadating little invention! . . . .😀
EileenH davidmelville
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davidmelville EileenH
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i think I like alternative medicine!
i do have a serious answer but that would be boring!
no seriously . . . . . . . .
lodgerUK_NE davidmelville
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I remembered that when we were ill as a child being given a teaspoonful of brandy when ill.
I also was told by my Grandad that an old barmaids cure for d & s was to mix a small measure of brandy and a small measure of port, hold your nose and throw it down (it tastes horrible), repeat in two hours. It works.
Brandy was invented by Medieval Monks as a Medicine. (No it was not Cadfael)
jan21306 davidmelville
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marykay62062 jan21306
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jan21306 marykay62062
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