ive been diagnosed with vascultis 2yrs ago

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Hi everyone

I'm new this group,was flicking through peoples posting so I thought Il give it whirl, 2 yrs ago got diagnosed with vascultis,since then been on right roller coaster off ride in out off Hospital,ive been various dosages off steroids from 60 to 15 ml 60000mg off mycophenalate a day daspone that nearly killed me well the list goes on,but to get to the point I'm at a point were there ready to put me through cycophosphamide iv infusion so has anyone had this course off treatment if so could u give us some honest answers to my question thanks for reading

Wayne

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7 Replies

  • Posted

    I haven't had that treatment hope someone else can help. But I did 3 years on interferon and went into a kind of remission. Some drugs work so well for some of us while others fail. I hope it works for you. Good luck.

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    • Posted

      Morning

      Thanks for reading, ive just ad my first dose when alright so were see were it takes me thanks again Il keep u posted

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    • Posted

      Hi that's good. I hope you find it useful. And remember, if it doesn't work there are other meds out there. But I hope it controls your disease. Let us know.

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  • Posted

    I have had Cyclophosphamide, but not for Vasculitis. I had it for cancer. Just make sure that whils you are being infused, drink plenty of water or whichever fruit juice you prefer (mine was lemon juice). It can cause cystitis.  If they don't provide anti sickness meds, ask for som. Although I didn't need them. And expect your hair to fall out. rolleyes  All the best.

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    • Posted

      Morning

      Thanks for yr replay babe, like you lemon juice is mine too, funny that they said it would make me tired feel rough in general, but i can say i had the complete opposite, i felt super human yesterday after my first dose mayb I'm different but Il keep u posted

      Thanks again

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