Thanks for all your kind words and support.
I'm really not in too bad of a place at the moment.
Blood results relating to WG activity are good. I know blood tests only tell half the story, but good results are still better than bad. I don't actually feel too bad if I'm resting (except for tiredness).
Although I'm feeling worse than pre-Rituximab, I can put this down to other reasons other than my Wegener's becoming more active - increased dose of steroids and lack of sleep.
Alysia - My creatinine result has improved slightly (288), but due to my symptoms my Dr has decided he still wants me to have the renal biopsy. This should be at the beginning of next week. He wants to see if there is any current inflammation or if it is all old damage.
I don't think you can have other immuno-suppressants whilst on RTX, such as Aza. I'm also trying to avoid Aza because I've been on it for about 15 of the last 20 years and it is causing odd-shapped, immature red blood cells.
I do agree with you about the longer the "smoulder" the longer it takes to get back in remission. This latest relapse started almost 3 years ago and diagnosis and treatment started almost 2 years ago. It's usually only taken about 6 months to get me back in remission, plus a few years still on treatment/meds.
Linda - Don't feel nervous about your first infusion on Friday. As I mentioned earlier, I don't regret trying RTX and, in fact, chances are I may need more/higher doses which I will accept.
Geoff - It's encouraging to hear that it can take quite some time to see the benefits from RTX. I was told that things should improve 6 weeks from first infusion. Perhaps because I'm not having an aggressive flare I won't see improvements for some time?
We will get to meet up. My appointment dates keep changing, so I'm trying to wait until things are a little more settled where I can plan a definite date and time.
Patty - I was also diagnosed just over 20 years ago. Hope the RTX goes well for you with no side effects. The only side effect that I'd consider bad is severe fatigue, but that may not be due to the RTX anyway (lack of sleep, one of my many other conditions, possibly WG becoming more active).
Geoff, Anne and Woz - Thank you.
I'll update with renal biopsy result. I suspect it will be old damage rather than active Wegener's causing inflammation, but we'll see. I hate renal biopsies. They're usually a quick and simple procedure, but things never seem to go as expected with me. The last time they had 15 attempts at obtaining a suitable specimen from my right kidney. They had to give up and move on to my left kidney where they succeeded after 5 attempts.
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