Not Sure the Rituximab is working

[blu4runner]

I had my first infusion of Rituximab on 8/16 and subsequent infusions on 8/26 9/3 and last on 9/9. My labs showed my wegeners active and I didn't feel good at all. Now almost 3 months later and I still don't feel good at all. Had ct scans this week for my Dr follow up on Monday next week and unfortunately the nodules in my lungs have continued to grow since the last CT in August. I will get updated labs on Monday and see what they show. I wanted to ask if anybody has had the rituximab and it did not work to put them into remission. I am anxious to see what my Dr says on Monday but gosh I hope to get some relief soon.

[pberggren1]

It sounds like you may have Refractory Wegs if your nodules are still growing after 4 infusions of rtx. Though, your last infusion was 2 months ago and I do know a few that have flared after getting rtx within 2 or 3 months again. So you may be flaring again. Have you had ctx in the past? You may need that if the rtx is not working.

Bottom line is: You need a top Wegs doc on your case ASAP. That is paramount for all Weggies.

[JeanMarie]

Blu,
Sorry the RTX hasn't worked for you. I can't really answer your questions because it was very successful for me. Was the dosage correct? I'm sure someone who didn't have a good response will chime in soon. I doubt it's 100% effective--nothing is. Hopefully, you will have a solution on Monday & you feel better soon!

[blu4runner]

No I have not had ctx in the past only prior treatment was methotrexate and prednisone. The good news is I have Dr Peter Merkel for my DR now, He took over my case back in August and I have great faith in him. I am anxious to get his opinion and have the new labs completed as well.

[pberggren1]

That is awesome you have Pete as your doc. He is very good. You must be in PA then?

[blu4runner]

I am in VA but about 200 miles south of the dr but it is worth the drive to see Dr Merkel. I had a chance to meet him at the Vasculitis Symposium back in July.

[rebekah]

I'm sorry to hear Rituxan isn't working for you. Like Phil says, if Rituxan isn't working Cytoxan will hopefully do the trick. You're in good hands with Dr. Merkel, and I hope when you hear from him on Monday he'll have a treatment plan so you can be on your way to feeling better. Please keep us updated. Hope you feel better soon.

[pberggren1]

That is interesting that both you and Rebekah were at the Symposium.

[blu4runner]

Yeah I had lunch with Rebekah and didn't realize it until after the symposium.

[pberggren1]

Wow, that is so neat....:thumbsup:

[Alysia]

Hi Victor.
I think that it is too early to decide that RTX is not working.
I started to see improvements only AFTER 2 months and I could clearly see it only after 3 months. my wg doc told me it can start working after only 4 months as well.
In addition, my first round of rtx didnt stop severe inflamation I had in my sinus. when I went to the 2nd round of it, 6 months later, my sinus CT still show inflamation deep inside. my doc is hoping that the 2nd round will help. I did my 2nd round at 24 sep and 10 oct. I am still feeling very tired and aching but my sinus starting to feel better.
anyway, the best advice so far is to ask your doc about it.
good luck and update us.