'Remission' with rituxan for 8 years and now it's back...

[sdeering]

My dad was diagnosed with wegener's 10 years ago and was in remission with rituxan for 8. Over Xmas doctors discovered a build up in his lungs after his 'sickness' wasn't clearing up and it was determined by his doctor he was 'flaring'. Shortness of breath, coughing, and fatigue are the most obvious symptoms. Apparently the rituxan isn't working anymore...anyone else ever here of this/have flared with rituxan? He has been on cellcept, methotrexate, cytoxan, and is now trying imuran. He sees a rheumatologist in Marshfield, WI, but is working on heading to Cleveland Clinic for hopefully more answers as to what is going on. We have been so appreciative of the 8 years of relatively good health, and are scared with what we are seeing now. Any help or input would be great, thank you!

[debra]

Hi, sorry, can't see the post name, just wanted to say hello, and I feel for you... This is a very dsucky sickness, and so unpredictable... Others will come and give advice, I just happen to be strolling through... I know relapse is a common thing with wegeners, but hopefully they can put the fire out quick and get you're dad back in remission... Seeing the specialist is of coarse the best option here, others will of coarse say the same, however they may also be able to provide names for you... All the best for you all and dad... Debra...

[debra]

Typo, sorry, tried editing... Deb...

[Pete]

Hello!

Hope you can get your Dad to Cleveland Clinic. A number of us go there, and our treatment is generally excellent. I see Dr Alexandra Villa Forte and really appreciate what she's done for me. Some others see Dr Carol Langford with great results as well.

I've had two rounds of rituximab - first in Oct '13 and most recently in Aug '15. Since last August, I've been off immunosuppressants. I still take bactrim 3x weekly and 5 mg prednisone daily. I'm doing well.

I was on methotrexate for three years prior to discontinuing it. Before that, I was on cytoxan for about 16 months with a short time on immuran in the middle of it. I couldn't take immuran as it turned out. I've tolerated most wegs meds pretty well. Got off mtx because the fatigue after taking it was getting problematic.

How long has it been since your Dad's last rtx treatment? He may need them more frequently in the future. Hope all gets better for him soon!

[annekat]

Welcome to the forum, sdeering. I have no experience with RTX, having only taken CTX and MTX as immunosuppressants. I am doing fine and not in need of anything different at this time. But I'm sure Pete's advice is correct, get your dad to the CC to see either of the two doctors mentioned. And feel free to ask as many questions as you want and tell as much of your dad's history with WG as you would like to. I wish him the very best in getting back into remission again.