i have been off predesone for 5 months, I no... - Vasculitis UK

Vasculitis UK

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i have been off predesone for 5 months, I now have joint pain in my back, knees and shoulder. I have difficultly walking up stairs.

angneil profile image
7 Replies

I have difficulty bending down. When i get up from a chair or bed I am like a cripple person.

anyone have this problem?

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angneil profile image
angneil
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PMRpro profile image
PMRpro

You don't say why you were on pred in the first place - but what you describe here would fit with polymyalgia rheumatica, especially the difficulty going up stairs and being stiff when you get up after sitting. There are several causes of this syndrome so you would need to see a doctor for some tests.

Tony-LakeDistrict profile image
Tony-LakeDistrict

ask for a bone density test, I had the same , it was " narcosis" in my case, caused by the steroids

best of luck

Tony

AndrewT profile image
AndrewT

Dear angneil,

Just a thought but are you positive for Rheumatoid Arthritis? I only ask because I am and, admittedly not recently(now that is tempting fate!) I can get a 'flare', of this' and the best way of controlling it is to up my pred. to about twenty milligram. Your symptoms sound familiar- I was on holiday once and just couldn't get up for dinner, certainly not like me at all (I'm about fourteen stone)!. You don't say why you were put on Pred., in the first place- was it vasculitis, or are you not sure yourself? Sorry but it could have a bearing, I'm not trying to 'pry' honestly!

In any event I wish you well.

Best wishes AndrewT

Ezrela profile image
Ezrela

I feel exactly the same as you, 4 years back I was diagnosed with Systemic Vasculitus, I was put on Steroids and before I got Vasculitus I was treated with Steroid injections for Atheritus, so in total I spent 2 years on Steroids, I gained 4 stones, the agony of coming off Steroids is awful, yes I have spent the last 5 years crawling about like an old person, I recently went into hospital for a chest infection, it is the 3rd time I have been in for this now, they put me on a high dose of steroids, you should have seen me, they kept me on them for a month, I was here there and everywhere and hadnt felt so well in 5 years, I was no longer crawling about and now being able to bend, I didnt even need my walking stick but most of all my Energy was brilliant, coming off the Steroids again made me feel ill, I ended up crawling about again,because I constantly suffer with Energy problems and cant walk cant bend in fact cant do much, its so frustrating, I have had numerouse tests all of which are okay, but I dont think my GP is doing this right, I have just asked for a ANCA (Anti Nuclear Antibody) Test a proper one but my Gp still insists on a full blood count including Chlorestrol, if I go to my local Rhumatoligist she will only inject me with more Prednisolone which in term will make me even bigger, but cut a long story short, Yes, Yes, I have the same symptoms as you, over the last 5 years I am slowly getting Atheritus all over my body, I think it is Auto Immune because of the lack of Energy, plus Atheritus, I really hope you get the right treatment and diagnosis, its no fun when you are like this its like a life sentence, my doctors dont want to hear me, good luck, let us know how you get on.

PMRpro profile image
PMRpro in reply toEzrela

If you have pain like this that responds quickly to a dose of pred is it very likely to be polymyalgia rheumatica - and about a fifth of patients have no abnormal blood results.

Google this paper:

"Our approach to the diagnosis and treatment of polymyalgia rheumatica and giant cell (temporal) arteritis" by Quick and Kirwan. It is aimed at GPs to diagnose and manage PMR in particular.

Kirwan isn't convinced about the normal bloods - but apparently he hasn't personally seen a patient! I have PMR no question - most of the symptoms disappeared in hours in response to a 15mg dose of pred but I have never had a blood test done with any raised results. It isn't a case of a single short course of pred though - you are looking at a low dose for years, not months. But it works and you get your life back.

Ezrela profile image
Ezrela

Mmm... yes its hard to pinpoint and diagnose some of my symptoms, I know if I go back to our local Rhumatolagist the answer will be an injection then out the door, think I must look into this again, it seems my major issue is energy stiffness and breathless, again I am an old crock before my time, I will suggest this and see if I can go anywhere else, and I will see if I can get a copy of this book.

Linda56 profile image
Linda56

I was like that when first diagnosed in 2008 but went on 30mg pred sand it got much better I have fractures in my back caused by osteoporosis had only been take pred for 4 months. I am now on 10 mg preds and 150mg azapothrine but as soon as I go any lower I get I'll again with all the pains as well.

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