Further update on my WG experience - Vasculitis UK

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Further update on my WG experience

suffolkgirl profile image
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Well, pre-assessment has taken place today, and biopsy is still scheduled for 20th March.

I'm still not too happy that this procedure is mainly due to samples from earlier biopsy not being sent from one hospital to another.

Still not sure about infusion on 15th, as apparently Rituximab has to be approved by PCT, so maybe more cyclo or nothing until after biopsy?

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suffolkgirl
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Annie-F profile image
Annie-F

Hope your PCT comes through with the Rituximab! I too had issues with that and was denied it for a looooong time. Had 13 weeks of cyclo which freaked me out because of the infertility side effects. Went on a 3 year roller coaster ride on all sorts of other drugs but nothing really settled it down. Finally, my doctors threatened my PCT with a law case and we were granted it the day we were due in court. I was in hospital at the time, very sick, and was lucky to have the help from the hospital with legal aid etc.

Receiving the Rituximab was the biggest blessing ever. It was an almost miraculous healing! It gave me 5 years of healthy, normal, acting living in total remission!

Just last week I had a relapse and feel terrible right now but I had the first dose of Rituximab last Tuesday so just waiting for it to kick in...

Good luck and hope you can get it soon x

suffolkgirl profile image
suffolkgirl

Thanks for your comments. I really hope you get back on track soon.

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