All About Rituximab

[me2]

I had one round of 4 infusions first and then a round of 2 infusions of Rituxan. My experience was that Rituxan was a real breeze compared to Cytoxan. Of course the one that makes me feel the worst is the one that will help me the most right? Isn't that how medicine works?
For those with sinus trouble I feel for you. I have had WG 30 years and the sinus trouble has not been gone for most of that time. In fact I suffered terribly from sinus infections for a long time. In recent times I do not get sinus infections. It is kind of puzzeling to me and my own off the cuff assessment it is that through some strange irony the WG has eroded out so much sinus material that they stay open. I know that on an MRI I was shown how much damage had been done to my sinuses . It was shocking to see an MRI of normal sinuses and then look at the one of mine. But since they don't get infected any more I think I will take what I have and be glad. I think maybe if I had a 'normal' set of sinus and current WG involvement that I would be more prone to infection. Its just a guess on my part but I thought I would throw it out there as encouragement actually that eventully you can get improvement even in the face of lots of damage. It happened to me.

[JanW]

me2, the docs at the conference say that often what WG patients (and unfortunately sometimes their ENTs) think are sinus infections are actually manifestations of WG, and that's how they end up with all these surgeries that sometimes can do more harm that good. Could it be that now your WG is just really well controlled or at a very manageable level?

[me2]

JanW, In the beggining ( I feel like I'm writing a bible) I started with just sinus trouble. Nose bleeds and pain. I was treated for a long time with antibiotics for infection which of course did zero good. Then my ENT did a nasal biopsy and it came back positive for WG.

In later years was when I started to actually have sinus infections. In my experience the infections feel different from the WG attack on sinuses. Also the infections I later had did respond to antibiotics. I just kept getting new infections and having to try new antibiotics. Ironically most of the infections happened during a period when I was in remission (20yrs)

The past few years I have been batteling a flare with a wide range of problems including sinus bleeding , crusting and pain. But, (knock on a big peice of wood here) through all of this I have not had a single sinus infection. I think I can tell the difference between WG and infection, I could be wrong but my experience seems consistent. Thanks JanW for sharing so much of your WG conference experience here. I have really been soaking it up.

[pberggren1]

My new ENT said nose or sinus surgery is a last resort for Weggies.

[pberggren1]

Brooke, I forget what sinus surgeries you had?

me2, I am in remission right now and have had a recurring sinus infection for the last year or so. It is almost gone now. My new ENT figured that one out. I forget that you were in remission for 20 years. How did you feel over those 20 years besides dealing with sinus infections?

[elephant]

Brooke I am so glad that the RTX is working for you! Sounds like you are in remission! Keep up the exercising, keeps you sane.

[elephant]

Me2, so what kind of antibiotics did they put you on with all those sinus infections? I am on antibiotics almost everyday now. Anytime I get off the antibiotic the sinus crap comes back!!!
When you were in remission for 20 years, tell me ( help me out) what sinus symptoms did you have?

[Sangye]

Brooke, I'm happy to read about how good you're feeling. You go, girl!

[Sangye]

I had one round of 4 infusions first and then a round of 2 infusions of Rituxan. My experience was that Rituxan was a real breeze compared to Cytoxan. .

Do your docs think that if you did another round or two of the 4-week protocol that you might get better results?

[Sangye]

I had 4 infusions once a week for 4 weeks. I don't feel I was that severe. Mainly sinus involvement and some lung involvement but no hemorrhaging or anything like that. I was on 20mg steroids at the time (May 2010 were the infusions) and am now down to 5mg and doing great so far.
I hope you get something that works for you me2.

I think anytime the lungs are involved it's considered severe disease--or at least severe enough to require ctx or rtx to induce remission.