Rtx Research

[Pete]

Came across this on the VF's facebook page this morning... Therapy for severe vasculitis shows long-term effectiveness

[drz]

Came across this on the VF's facebook page this morning... Therapy for severe vasculitis shows long-term effectiveness

Specks told me last week this study would be available soon and here it is. Thanks for posting this. I thought I was going to have to go search for it.

For me the depressing part of this article is quoted below and why we need to remain vigilant once diagnosed:

Most people treated for ANCA-associated vasculitides eventually relapse, regardless of whether they receive rituximab or cyclophosphamide-based therapy. “The risk of relapse following treatment-induced remission is a reality of these chronic autoimmune diseases,” said Dr. Specks. “The data from this trial suggest that intermittent retreatment with rituximab could be a more effective approach to long-term disease control than daily immunosuppression for patients who are at a high risk for relapse.”

[Alysia]

Hi Pete.
thank you so much for sharing
I have 2 questions if anyone knows:
1. the treatment in the study is about people who recieved RTX once a week for a month. this means prob 4 IV, each 700mg, as I remember some wrote here. I got it by 2 IV for a month, each 1000mg. is the effectiveness the same?
2. if RTX is working well, does it means that weaning from pred and MTX is possible without risking with relapse?

[Alysia]

For me the depressing part of this article is: And why we need to remain vigilant once diagnosed:

“The risk of relapse following treatment-induced remission is a reality of these chronic autoimmune diseases,”

Hi drz, I feel the same

[Pete]

Even though I'm currently feeling pretty good and leading a pleasant life, I remain a little paranoid about when the wegs dog will awaken.

[Dirty Don]

2. if RTX is working well, does it means that weaning from pred and MTX is possible without risking with relapse?

Weaning from them and retaining remission is possible now...rtx just makes it surer when one has a powerful backup for a relapse. And, there will be a 50/50 chance of relapse without a cure anyway...so, good to have rtx, but it's not a cure all...one is still in the same place as before, just feels better...it's WG...way it is.

[drz]

There is always a risk of relapse no matter what you do. Once you go off all meds there is about 80% of chance of relapse within two years. While staying on the meds doesn't guarantee that you won't relapse, it is thought to reduce the risk some what. If you can easily survive a flare and haven't had one while on maintenance meds then, it seems reasonable to try going off all meds since many people can do so but won't know if they are one of those who can, unless they try getting off all meds. The meds do have adverse side effects so everyone would like to be off them all if safely possible.

[pberggren1]

Alysia, the Wegs treatment is so individual based on organ involvement and severity of disease. If one does really well and does not flare and does not have organ involvement then one could probably get off of all meds. But if you are someone like me in which the lungs are severely damaged then one would prob have to stay on immuno suppressants the rest of their life.

[Alysia]

thank you so much, dear friends, for your posts
it means that we cannot know what is waiting for us
it can be a road to remission or to relapse, only God knows...
and it means that we have to be our own docs all the time.
I'm not only worried about myself, but also about all of you, my dear friends in this awesome forum.
I couldn't have survive without this place
I love you all and I'm sending my prayings to God to heal us