Feedback -- Rituxan Failed

[amy.r.kahl]

Bdawg212 I remember every doctor that I have seen....and fired. Just BC one specialist was rude doesn't mean all are rude. And that guy has some of the most scary symptoms I've heard of I mean come on ur air way being referred to as a crush straw!! I think he should try a specialist if you think a specialist is bad then you should post your experience not post that specialist aren't great.


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[bdawg212]

Yeah, I didn't say specialists aren't great. I just said I tried one and I love my current doctor. I was mostly wondering if anyone had problems with failed Rituxan. Thank you anyway.

[im so blessed]

Im sorry ur going thru all this....it is a very difficult disease to find the right fix for each individual...im glad u are comfy with ur dr. That is important! Ive never done rituxan but am considering it since my current mix of imuran and methotrexate are not keeping my stenosis quiet. I think rtx has helped many but i hear it takes time and like every other side if this disease, each person will respond differently. Best to you

[bdawg212]

Thank you blessed, I appreciate the support. Methotrexate didn't work for me either, so I can feel your pain there. I hope the Rituxan works for you and you get your stenosis under control. Take care to you!!!

[mrtmeo]

My mom didn't have the great response most have with rtx.
She is in her 6th month from first infusion and has not gone into remission.
The first couple months caused her symptoms to flare worse than they ever did.
Now, she is on Mofetil to see if she goes into remission and is helping except she gets sick on the higher dose.

I think with Rtx, it works best if someone has been in remission before or they caught the disease early.
It does work much slower, but the b cells start regenerating starting around the 6th month.

Did they ever do a kidney biopsy when u had the kidney failure?

[MikeG-2012]

I saw a WG specialist at the University of Wisconsin Hospital, one of the best in the Midwest, and he didn't want anything to do with me. He didn't even call me back. When I went back to see him again, he pretended he didn't know me. :-/

If you are anywhere near Monroe, WI, let me know. I can put you in touch with my team of Docs at the Monroe Clinic.

[mrtmeo]

Hi BD,
Have you had any improvement with the cellcept?

[Rose]

Hi and welcome.

Just like to say that I have bowel involvement and of all the organs that WG has attacked (sinus, lungs, kidneys etc) the bowel involvement has given me my worst symptoms. it is rare and I went undiagnosed for17 years despite numerous scopes test etc. A few years after it attacked my other organs in 2007 (when the WG was diagnosed) I had a rectal bleed and had another colonoscopy. This time they looked for WG in the bowel and the initial histology test showed nothing but a further test was done which showed active vasculitis in the small blood vessels. ( although mild at the time blood test said I was in remission)

i hope you start to respond to the RTX soon. My remission was induced with cyclophosphamide and is being maintained with Cellcept....6 years almost now.

Rose

[mrtmeo]

Hi and welcome.

Just like to say that I have bowel involvement and of all the organs that WG has attacked (sinus, lungs, kidneys etc) the bowel involvement has given me my worst symptoms. it is rare and I went undiagnosed for17 years despite numerous scopes test etc. A few years after it attacked my other organs in 2007 (when the WG was diagnosed) I had a rectal bleed and had another colonoscopy. This time they looked for WG in the bowel and the initial histology test showed nothing but a further test was done which showed active vasculitis in the small blood vessels. ( although mild at the time blood test said I was in remission)

i hope you start to respond to the RTX soon. My remission was induced with cyclophosphamide and is being maintained with Cellcept....6 years almost now.

Rose

Hi Rose,
Was that test for the GI vasculitis an abdominal angiogram?