WHEN to use Rituimab, and scheduling? In the face of 2' infection in the sinus....

[Palmyra]

For those of you that are now using Rituximab for a medically induced remission, I pose this question to the group. Have you had specific instructions as per use? How often, and on what grounds/intervals are you advised to take the stuff?

This means dosing, frequency and how long do you use this great new medication....Is there an end-point? I would love to hear global guidelines and schedules that have been suggested and compare notes. I know it is new, and there is not a lot of data regarding these questions, but lets boot it around and see what we come up with in the English speaking world.

Can it be safely administered when one is dealing with infection, (specifically, a fungal infection of the sinus cavity, or an infection of any kind). Rather like taking cytoxin when one is flaring in the face of a secondary infection only now the new med of choice is Rituxin....it dosn't deplete the entire immune system, only a major hunk of it. )

Best wishes, and open to all suggestions,

Palmyra, mom to Alison, currently on 20 mgs of pred and dealing with chronic sinusitis and not on a consistent Rituxin schedule. The sinuses have been a problem this year, in Austin, TX...dealing with living with two cats....the daughter will not remit the cats at this point. Local ENT is threatening surgery on the septum...I will not allow, fearing saddle-nose as a result.
Help!

[Sangye]

I've had two rounds of rtx (the 4-dose regimen) and my Wegs is under control. At my last visit I expressed my enthusiasm for rtx and Dr Seo literally wagged his finger at me and told me not to be a "cheerleader" for rtx, since it's so new in the treatment of Wegs. He said we just don't know about long-term effects since it's only been in use (for Wegs) for 5 years. He said, "For all we know you might grow an arm out of your forehead 10 years from now." LOL

He plans to repeat another round when my B cells start to recover. He's hoping that will be in 1 yr from the last treatment (March). I don't think that is necessarily the plan for everyone. My case has been refractory for so long with severe activity (ie alveolar hemorrhaging twice) that I think he doesn't want it to wake up again.

[pberggren1]

Has Alison ever been on ctx?

I know that Dr. Specks has great faith in rtx and thinks that ctx is out the door when it comes to using the 2 drugs to get Wegs into remission. But Dr. Hoffman says that ctx is not out the door and should never be ruled out. So even the big guys do not agree on everything.

But I think that if I was given rtx when I was dx, instead of ctx, I would be dead. I had severe and fast onset of Wegs.

[Jack]

I suppose I am only reacting due to my own bad experiences with misdiagnosis, but every time I hear people on the Forum speaking of sinus infections I immediately think that it is really active Wegener's. I know this is unreasonable since I have also had sinus infections that have responded to antibiotics, namely Bactrim. But my No1 sinus "infection" was only cured using ctx.

[Sangye]

Dr Seo doesn't think ctx is out the door at all. He still uses it a lot and would have kept me on it to treat last year's flare if I could have tolerated it.

[Palmyra]

Ohhh, I am so glad this site exists, as you are all such a wealth of information. In answer to your questions, no, Alison has never been on cytoxin, and with B-cell depletion being almost constant, secondary infection has been a real problem. I do not know if she might be able to get a longer and more sustained remission with cytoxin.

I do know the experts have differences of opinion on drugs and management, so I have an open mind to other Vasculitis centers for additional opinions, as well. I think one's bag of tricks should be open to what works, and not closed to older drugs. Is secondary infection as much of an issue with cytoxin?

And Jack, there is always the possibility that she does have Weg involvement and fungal infection of the sinuses, going on at the same time. Recent cultures have been positive for both staph (ugh!) and fungus. She gets 'debrided' again tomorrow, so we will see how that goes.

[pberggren1]

Palmyra, ctx can drop the white cells very low making one very susceptilbe to infections as well.

[Sangye]

I agree. The risk of infection is just as high with ctx as with rtx.

I like your idea of getting other Wegs specialists involved, Palmyra. It may be time to consider ctx. Dr Seo has said he's using rtx more conservatively with younger patients (including me, age 46) because the long-term risks are not known.

[drz]

Has Alison ever been on ctx?

I know that Dr. Specks has great faith in rtx and thinks that ctx is out the door when it comes to using the 2 drugs to get Wegs into remission. But Dr. Hoffman says that ctx is not out the door and should never be ruled out. So even the big guys do not agree on everything.

But I think that if I was given rtx when I was dx, instead of ctx, I would be dead. I had severe and fast onset of Wegs.

My case was rather similar. Dr. Specks recommended I start with Rituxan and I had two IV treatments of it but then they switched to Cytoxan because my Wegener's disease was not responding quick enough to the Rituxan. I am still on Cytoxan oral meds but hope to switch soon to something a little milder.