Prednisolone withdrawal side effects
Posted , 45 users are following.
Hi, I'm a new member and wonder if anyone can give me some info about the side effects of withdrawing prednsiolone at the lower doses. I have a lung condition called crytogenic organising pneumonia and have been on Prednisolone for a year now gradually reducing from 40 mg this time last year to 3 mg now. The reduction had been quite rapid without too many side effects until I got to about 10 mg and then I started to get really bad muscle aches and also stiffness although it started out on the right side only, I also get neuropathic pain on that side because of a trapped nerve so sometimes its difficult to distinguish between the two. The plan is to try and reduce them and stop by the end of December. Reading the other posts, I realise that I've got away lightly compared to some people. What I really wanted to ask is if it's normal to have pain in different areas on different days, i.e., sometimes I've got pains in my knees, sometimes my upper legs, sometimes my lower legs and so on? Its started now to come on in my arms as well. Do you reckon this is due to the steroid reduction or something else? I've also heard that the withdrawal symptoms can continue for several months after stopping the steroids completely? Anyway, thanks for any ideas x
0 likes, 113 replies
header54 jill18540
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judith79565 jill18540
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white_daisy jill18540
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white_daisy jill18540
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wendy62425 white_daisy
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I take Prednisone for Chronic Urticaria. I have been on it for over two years on a lower dose. My doctor has me go down 1 mg at a time for Two weeks then go down another 1 mg and so on. When down to 1mg she has me take the 1mg every other day for a few weeks before stopping to zero. I was almost there at stopping until I was experiencing some stress that I ended up breaking out in hives so I unfortunately had to go up again to 3mg and on my way down again. Important to stay calm with little stress!! Going down very gradually is key to getting off the Prednisone.
sharlenafoster jill18540
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Nausea
Joint pain
Body aches
Loss of appetite
Weakness
Severe fatigue
Lightheadness
leigh89691 sharlenafoster
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Hi, thank you & yes have experienced the awful joint pain. Unfortunately in South Africa we do not have 1mg prednisone so I am going to try 5mg one day then 2,5mg next day & see if thats ok. Tired of the doctors now....going to do this on my own & see if every alternative day works. Thanks!
Lambophil sharlenafoster
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Yes so true, had them all when trying to come off too fast. After 21years of non stop various corticosteroids I am down to 0.5mg of dexamethasone but sorta stuck at this level with a dry red face and itchy skin. Never the less I am grateful and happy to be here.
michelle24226 jill18540
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I am also a new member. I was on 10 mg of prednisone for over 10 years for arthritis. I am 53 years old , and postpost-menopausal . After weaning off of prednisone slowly I didn't experience any withdrawal symptoms for about a week. Then they came, the same symptoms that most of you have with one twist. I have now been free from prednisone for about three months and am now experiencing severe itching that usually starts on the tops of my feet and moves on from there until my remedies of topical anti itch creams, warm epsom baths, and benadryl finally relieves it for the night. Not only that, I cannot stop sneezing and the smallest irritants are magnified to the point that I now have 2 air purifiers running 24/7. The normal lack of fluid retention and weight loss has started to help, but I feel like the itching may be related to the rapid fluid retention loss. ( I have had severe pedal edema on and off for years while on prednisone and since withdrawal began it has been constant). I was wondering if anyone else has had these itching and sneezing symptoms as a result of prednisone withdrawal. It seems to me that this makes sense, (the whole cortisol level thing). Thanks for any responses.
barney34567 michelle24226
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As I understand, prednisone (pred) reduces the symptoms of many ailments including itching. So when you were taking pred, without knowing you had itching symptoms, the pred dealt with them.
Now you're off pred, so the itching reveals itself.
The two questions before you are:
Best wishes to you!
EileenH michelle24226
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Pred will manage allergy symptoms amongst other things - nothing to do with cortisol, it just damps down the immune system in general.
EileenH barney34567
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You were lucky with HC - I know several PMR patients who required HC to encourage adrenal function to return to normal but asked to go back to pred which had caused them no problems at all while they found HC unpleasant.
Everyone is different - I had terrible adverse effects with methyl prednisolone but nothing at all with prednisolone or prednisone.
barney34567 EileenH
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Interesting that you had problems with prednisolone and not prednisone. The former as I recall is metabolised by the kidneys whereas the latter by the liver.
Given both have similar therapeutic effect, by all means keep away from prednisolone, but inquire if there are options to deal with the itching other than ,low doses of prednisone.
You should be on prednisone for as long as you need, but no more.
EileenH barney34567
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No - both prednisone and prednisolone were fine, it was METHYLprednisolone/Medrol that wasn't. The methylation of the pred is supposed to increase the antiinflammatory effect - for me all it did was increase the adverse effects and not the desired antiinflammatory effect!
The difference between prednisone and prednisolone is that prednisolone is the active form and is ready to go as soon as it is in the bloodstream. Prednisone must be processed by the liver to turn it into prednisolone. The role of the kidneys is to excrete it.
I don't have any itching - at least, not due to pred. If I itch it is because I ate wheat!! I've been on pred for over 10 years and there is little sign of getting off it soon. I don;t mind - it gave me my life back.
barney34567 EileenH
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Have you been tested for allergies including but not limited to gluten?
EileenH barney34567
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No - it was quite clear it was wheat, if I don't eat it I don't itch! Nor is it gluten - I can eat other grains containing gluten. And I itched if I ate Juvela products made with their flour derived from washed wheat starch. The local coeliac specialist was convinced it was wheat starch causing the problem too.
barney34567 EileenH
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That makes sense.
You could do worse than see an immunologist to test you with the constituents of most wheat products (granted highly processed products have many ingredients).
That way you'll get or should get a comprehensive picture of what specifically triggers your itching.
EileenH barney34567
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I saw an immunologist for a couple of issues. She said we could test for thousands of things and still not get an answer - was it really worth it when I know what to avoid? It is a great incentive to avoid highly processed junk - living in northern Italy means easy access to good fruit and veg and high quality meat. And being on long term pred means a low carb diet is an advantage in moderating the usual problems of weight gain and risk of steroid-induced diabetes. I can eat small amounts so don't worry about there being traces and just minimise exposure - and occasionally there are things that I deem worth itching for. Plenty of products here made of spelt, kamut, rye or naturally wheat/gluten-free substitutes.
barney34567 EileenH
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It seems you understand the issue well. You could if you wanted to, narrow your focus to certain types of wheat or certain brands of wheat. After all, it is possible that wheat per se is not the problem but how it is processed. Or better yet, you could just stay away from wheat altogether.
EileenH barney34567
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Which is what I do - sorry if that wasn't clear. Because of pred I eat low carb anyway - wheat doesn't have much of a place there.
barney34567 EileenH
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Understood. Thank you.