Rituxan tomorrow - any tips?

[Kami]

How much pred are you on, Kami?

Dr Seo said he wouldn't give less than 80mg solumedrol (methylprednisolone) with rtx to prevent reaction. I get 100mg. I'm only on 2.5 mg oral pred. If you're on higher dose pred, you might not need as much solumedrol during the infusion.

I am on 20 mg prenisone until Sunday then I go down to 10 mg and then June 8 I go to 5 mg and then on July 8th I go off of it again as long as all goes well I guess.

[Kami]

So glad it went well!!!

[ScreaminMeanie]

Kami, have you noticed any improvements in your symptoms yet? My arthritis symptoms have definitely improved already, and the lesions have almost completely cleared up.

[Kami]

I have been offline for a few days, feels good to be back! I had my second treatment yesterday and all went well, no reactions, yay!!!!!! Found out my max rate is 400mg/hour but I never got that fast at 690 mg but got up to 350 I think without a problem. Took our own lunch this time much better than the patient lunches they give you, a cold soggy turkey sandwich that must have been in the fridge for days! Otherwise I really like the clinic where I go. Next time I might take a DVD as thier list is a bit slim, watched NCIS most of the day

Saw my blood doctor on Tuesday and just thought that I would share what he said about Rituxan. I told him I had been unable to find any information on long term effects all i could find was information on infusion reactions and he said it is because there aren't any long term issues, infusion reaction are very common and the biggest problem there is with Rituxan. He has used it a lot for the last 15 years for the treatment of auto immune blood disorders and he has seen no long term problems with it. He says he feels that it is very safe long term because he should have encountered problems by now. He gave the example as like what happened with phen-phen if anyone remembers that. I thought that was very good news for us!! yay!!!!!

Also saw my Rhuemy on Tuesday and he has decided to keep me at 20mg pred for another month until the rituxan has more time to kick in, then taper me to 10mg. Other than that all seems to be going good.

I don't have RA or lesions so I can't comment on improvement that way but I did notice last night when I sat down and turned the tv on I could actually read the program guide. It's still a bit fuzzy but I couldn't read it at all on Monday night when I watched tv. Yay! I am so happy to see improvement this way, I have been very frustrated fighting with my eyes at work, driving, everything!! I do feel pretty wiped out a lot lately and they said yesterday that is a side effect of the rituxan and should improve.

So mostly positive here lately. Hope everyone else is doing good. I think of everyone here often now and it is great to feel a part of such a big "family" if you will. Thank you! Take care! Kami

[ScreaminMeanie]

Oh, Kami, that's AWESOME to hear! I've had a lot of problems on and off with my eyes but it seems to be allergy-related (as a result of being immune-suppressed), not WG related. In any case, the little problems I've had make me ever so much more sympathetic to your vision problems. I'm SO glad you're getting some improvement!

[Sangye]

Kami, that is great news. SO happy you're doing well already.

As far as the long-term problems with rtx, yes they've used it for over 10 yrs for Non-Hodgkins Lymphoma. That would be what a hematologist (blood doctor) knows about. But it's only been used for less than 5 years with Wegs. That's the unknown--will it affect us differently or cause some problem that wouldn't happen with NHL? No one knows.

I don't dwell on this uncertainty but just wanted to let you know that's the reason for the Wegs specialists using rtx with caution.