Any Ritixumab successes?

[Martin Thomas]

@Cindy M That's quite a big-hit regime. Do you know whether the plan is to drop the cyclophos in the near future once the Rituximab has depleted the B-cells?

[Sangye]

I agree. Personally I've never heard of ctx being along with with ritux.

When I was going to switch from Cellcept to ctx for this flare, I asked my Wegs doc if I should transition off the Cellcept slowly, since it takes a month for the ctx to work fully. He almost leaped across the room as he said, "NO!!!!" Cellcept also depletes B cells (different mechanism from ritux though) and he said the combo would be deadly.

[Cindy M]

No, I'm not sure what the plan is. All I know is that I had quite the flare up in July when I started to lower the preds. They decided to try another avenue since it seemed liked the cyclo was not working well without the preds. I just hope that something works, I am getting tired of popping all these pills.

[Cindy M]

Hi Sangye, I still have not figured out all of your abbreviations. CTX is that cyclophosamide, and is that what you have not heard of being given at the same time as the rituxan. What is cellcept?

[Jack]

CTX is cyclophosphamide in all but name.
Cellcept is another imunosupressant, but much less agressive and toxic.

As far as popping lots of pills, I'm afraid it is just a way of life for most of us.

[Sangye]

Cindy, sorry about the abbreviations! We all use them, so here they are :

Cyclophosphamide/ Cytoxan : cyclo, ctx

Methotrexate : mtx

Prednisone : pred

Diagnosis/ Diagnosed : Dx/ Dx'ed

Wegener's : Wegs, WG

Cellcept is an immunosuppressant often given to recipients of kidney transplants for life. Since it's a daily oral dose, it's easier to control than rituximab. Both are fairly new in Wegs treatment, and as far as I know they've had about equal success.

Please do me a favor and double check with your doc that you're supposed to stay on ctx along with the rituximab. It's so easy to miss information in our many doctor visits and I don't want you to be hurt.

[Davey55]

Hi everyone,

I am a major success story for Rituximab and highly recommend pursuing this treatment to any WG sufferers. I had a very severe rapid onset case mainly involving kidney's, lungs, and nose. After a week of continual worsening kidney function following high dose prednisone and cytoxan administration, Rituximab was discussed and ultimately administered the following week. After reading up on it and the theory behind the drug, one can see how awesome and powerful it is. The drug flags CD-20 B-cells (the specific white blood cells implicated in WG causation) for deletion by normal White Blood cells. The drug is specific enough to only target and attach itself to these CD-20 B-cells so minimal or no side effects (as I can testify to in my case) are typically observed. Once these CD-20 B-cells are destroyed, new ones populate from stem cells. Obviously there is a huge cost in the production of this highly engineered drug, but I really believe it is the right strategy in Wegener's treatment. I often tell people I owe my life to it. The fact that I have maintained full medical remission for over 2 years now from a highly aggressive case is amazing to me. I give Rituximab my absolute highest recommendation and urge all WG sufferers to pursue it.

[Sangye]

That's awesome! The ctx and pred never really worked for me the first time and left me incredibly weak. I've never recovered. Being back on ctx now (and 5 mg or less pred) is doing the same-- weakening me further. I hope I get to use ritux and that it works like that for me!

[margaret]

Davey - do you remember what your ritux regime was? I believe my brother is getting 1 infusuion/wk for 4wks, after that I'm not sure what the plan is. I know he's still on lots of pred (60mg?)... and in the hospital now for an infected picc line and a partially collapsed lung. If its not one thing with this kid, its another...

[Sangye]

Margaret, I'm sorry your brother is still in such bad shape. Those are serious complications. Wegs is a horrible, horrible disease. I usually just use one "horrible" but reading that news today justified an extra. I hope he turns the corner soon.