Rituximab Round Two

[Jack]

It happens Sangye. If you remember, I forgot my Ped a few days ago and felt bad. It took all day for me to work out what was going wrong.
Hope you feel better soon.

[elephant]

I have done that a couple of times! Especially when I forget the Beta blocker!

[pberggren1]

That reminds me.......

[Brooke]

Sangye~ What medication were you on before you started the rtx?

[Sangye]

When I was first diagnosed, I was put on ctx (oral, 150mg/day) for about 8 months. I transitioned onto mtx for 2 months but quickly developed pneumonitis (lung infilitrates) and had to stop it. I went several months with nothing and then went on Cellcept 2,000mg for 2 yrs. When my lungs started hemorrhaging again. I went back on ctx (oral, 150mg) for 3.5 months. Though the dose was too low for my body weight, it was destroying my bone marrow faster than I could make it and not controlling the Wegs. I did a round of rtx infusions (1/wk for 4 wks) in October and repeated it this month.

Pred-wise, I began with IV "pulse" steroids (1,000mg solumedrol for 3 days), tapering off them within 7 months. I was completely off pred for 2.5 yrs. I went back on it (4mg) last summer because of the current flare and haven't been able to taper since. My body is extremely sensitive to pred, with each 1mg acting like 10mg. So this measly 4mg is like 40 and is bad news for me.

The reason I was not on any meds for several months in 2007 was because my local rheumy was so awful I fired him and I didn't have access to anyone else. I had no idea about active Wegs vs remission and thought I was done with treatment. In retrospect it's clear that I was definitely not in remission, but the Wegs was not active enough to cause my lungs to hemorrhage, either. I was in terrible shape--quite weak and sick. If I'd been properly treated initially (with a pred taper based on Wegs activity, not on a textbook protocol) I believe I would have gone into remission within the first year. I began treatment in mid-2006.

[Brooke]

Thanks Sangye. Do you know if most people need another round of the rtx? The way my doctor made it sound, was I would only need the one months treatment and that should hopefully help. She said of course if that didn't help - we could try another round 6-9 months after. How did you feel from November until now? Did you have another flare or why did you have to do another round?
Were you put on Rtx because the ctx was not working for you?
Sorry so many questions!! I will probably have a lot now that I will most likely be starting rxt soon.

[moyan]

Hi,I am beginning to doubt I will ever go into remission. Like you they started me on 200 mg procytox, but within a couple of months I needed 3 bloodtransfusions so down went the dosis to 150 mg. I wonder if I would have felt better today if he had known enuff to switch to another chemo, but
if I start seriously wondering, I would be deeply depressed so I spend my thinking on other things than tripping on plushmice in the night that I can blame on pred.
You sure got the worst of it Sangye, and still encourage us others, a true samaritan!

[moyan]

PS mistake, down to 50 mg

[Sangye]

I don't know any statistics on the average number of rounds needed to induce remission or maintain it. I know Weggies who had 1 round and never needed anything else, and I know Weggies who do well only if they get more rtx every few months. And everything in between!

There are also two protocols: 1/week for 4 weeks (total 4 infusions) or 1/ every other week (total 2 infusions), depending on Wegs activity.

When we did the first round last October I asked my doc what the plan was. He said "We'll see." There's no way of knowing with rtx. This is actually a good thing-- it works so well that they don't want to automatically commit to more rounds if you don't need it.

I've never been in remission, but you could say that last year I had a flare of active disease. My lungs hemorrhaged, which is considered a severe flare. The rtx stopped that and some symptoms have been better. We repeated it this month because I still have symptoms of active disease. Tapering pred by 1/2 mg caused them to fire up within a week. A good analogy is that we got the raging forest fire mostly contained, but now we have to extinguish it.

[Sangye]

Moyan, you've been through plenty. It sounds like you had the same problem as me-- the ctx was destroying your bone marrow. I know once you get talking to a Wegs doc you're going to get better.