I`ve just had a holiday from vasculitis. - Vasculitis UK

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I`ve just had a holiday from vasculitis.

Tony-LakeDistrict profile image
4 Replies

I`ve just had a holiday from vasculitis.

A few weeks ago I had to take `Pred` for a couple of weeks, after a few days, my wife said " you have turned into motor mouth", & we began to realise, that I was doing jobs around the house, & in the garden, stuff I hadn`t been able to do for the last 7 years.the only downside was that in the evening ,I felt like hell, I didn`t sleep, BUT in the morning, I got up full of energy.

After I finished taking the pred, I went back to what has become my normal self.

At least I now have the satisfaction of knowing, despite my 71 years, I`m still me, and maybe the doctors will discover, how to make me " normal", no more having to take to my bed in the afternoon

A rejuvenated but fategued again

Tony

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Tony-LakeDistrict profile image
Tony-LakeDistrict
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4 Replies
Albasain profile image
Albasain

Good on you! It has much to do with attitude as with the preds. In 2012 the vasculitis had me screaming in pain, by 2013 I much improved and this year I'm nearly at my previous self. Still a bit unsure regards balance but I did manage to cross from dockside to boat. OK, it was only a couple of feet in distance but I did it and that was a boost to my confidence. Next year I will go the whole hog and start sailing again, rolling decks and all. It's all about setting the challenge and rising to meet it. Step by step! Yes, sometimes I feel lethargic and just want to stay in bed but I remind myself that that could be the beginning of the downward spiral so then, on those occasions, I force myself to get back into the stream and in a few moments the lethargy disappears, so it does have much to do with the mindset of the person. As it is I'm reducing my preds to 1mg a day and by November I will reduce it even further though I must admit the Cushings syndrome did make me look much younger than I am, the wrinkles are starting to appear again!

On that happy note I wish you well. A.

Tony-LakeDistrict profile image
Tony-LakeDistrict in reply to Albasain

I agree with you, I can do so much more now than I could 3 years ago, in my case I have learnt how far I can push myself, without hitting the "brick wall", feeling as though your body is shutting down, is not the most pleasant, as you must have found, but as you say, we must try to push our boundaries.

But being on pred for a couple of weeks was a real eye opener, I would love to have that energy full time

Do a jibe for me

Best wishes Tony

PMRpro profile image
PMRpro

What sort of vasculitis do you have? That effect sounds just like the effect pred has on polymyalgia rheumatica (also now recognised as a vasculitis) - we go from being in so much pain and being as stiff as a board to almost normal in a few hours! For us, pred is the only option for treatment - or rather management as it requires long term pred at a low dose until the autoimmune bit burns out which can be years.

Tony-LakeDistrict profile image
Tony-LakeDistrict in reply to PMRpro

I have M.P.. Kidney & lung damage, I don`t have any pain, I suffer from acute fatigue. Treatment is Mycophenolate plus the usual "suspects"!!!!

Best wishes Tony

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