IV steroids:: i would try alternatives, if at... - Vasculitis UK

Vasculitis UK

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IV steroids:

8 Replies

i would try alternatives, if at all possible folks, but if you wish to ignore or go with your treatment, that is your right and decision, so its fine, whatever helps you o n your journey!

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8 Replies
PMRpro profile image
PMRpro

It depends on the type of vasculitis. If you develop Giant Cell Arteritis all that is between you and total and irreversible loss of vision may be high dose steroids, and possibly a pulse therapy of very high dose i,v. steroids. You can't ever make sweeping statements unless you know the whole story.

Im sorry but does my statement sound sweeping, no i think not, its an opinion of fact statement, where people can chose there path to take!

in reply to

and what else does steroids cause, that people forget to mention, though!

KASHMIRI1 profile image
KASHMIRI1 in reply to

You just have to put up with steroid side effects and learn to live with them if you have vasculitis. As PMR says it's better than risking your vision. I have had just about every side effects on the leaflet in the steroid box and lived through it. It's tough but worth it.

May7 profile image
May7 in reply to

I am living with the side effects of steroids, "living" being the operative word.

Nadine99 profile image
Nadine99

What on earth prompts you to make a statement like that. We all know that steroids have side effect but one effect is has, is to keep people alive.

eh66 profile image
eh66

Personally I was glad when I came off steroids, and my consultant was really good about managing that process, but steroids stabilised my condition until the immunosuppressants did their stuff. If or more likely when I get another flair up, I will unhappily take steroids again knowing they are part of the pathway back to remission.

Judging by what others have said; for some people steroids aren't just an interim measure, but a vision and I am guessing a life saving measure.

ZiggyDiego profile image
ZiggyDiego

when I had IV steroids in 2017 I don’t remember any sense of a choice. It was an emergency to get my severe scleritis under control. My sight was at risk for sure and later I found out that my lung problems had resurfaced. I still have a legacy of issues from that time but I my vision is ok and my lung function is now normal. I’m off steroids altogether and glad of it. But if my GPA relapsed that badly again, I’d be glad for any help to get me through.

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