treatment for a flare: just curious,as to what... - Vasculitis UK

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treatment for a flare

quinnster profile image
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just curious,as to what happens if you have a flare

what treatment are you given,surely you do not go back on the cyclophosphamide infusions

and if it effects your kidneys or lungs,is the damage done with a flare up irreversable

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tintinrob

My Churg Strauss vasculitis often has small flares, my eosinophil count goes up and breathing becomes more difficult, even MORE pain in feet, muscle weakness etc. (I have regular blood tests for the eosinophils but you can't tell when it's going to flare up) and so far, a pulse of prednisolone has brought them back down, got me breathing again. Depends on how bad the breathing has got, but I think on the whole any probs will resolve if you can keep the evil immune cell count low. I read about vitamin D3, seems this can have a role in helping breathing recovery, I've been taking 2,200 i.u. per day and this has kept me chest-bug free. I've asked not to have cyclophos treatment as lots of the nerve damage I have seemed to arrive the day after each infusion and I'm scared this could happen again. I would again, though in extremis. So my advice is... keep a regular eye on your blood counts, our GP surgery does these and sends them off to Derriford hospital, results come back after a couple of days. GP keeps an eye on results as do I, calls me in of they're heading in wrong direction. Alter maintenance treatment if signs of flare coming. DON'T expect it to go away by itself, a flare could damage you and you've had enough bad luck already, if you have vasculitis!!!

CP treatment v effective in the worst case scenario but a maintenance treatment (azathioprine, methotrexate, cellcept ...whatever agrees with you) is a better plan in my opinion - I'm stuck with preds as I had bad reactions to everything tried so far. MTX was good for a coupla weeks but then I found neuro signs got worse (hard to walk) then breathing got really bad. Cellcept made lungs worse. But some people find it just the job. Depends on your genetic makeup I suppose. Keep trying and avoid flares!

All the best.

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