Rituximab

[gilders]

Is this routine procedure, I am being treated in London? Also does anyone know if there is anything that would mean I couldn't have the rituximab.?

Hi Bloom,

The only thing that doesn't seem "routine procedure" is the lack of prednisolone (unless you didn't mention it, but had it)
Cyclo will usually be used first as it often works and is much less expensive.

The only thing I can think of that would prevent you having RTX is if you've ever had hepatitis b and the funding problems.

It has taken about 3 1/2 months for me to feel any improvement from my first RTX infusion, so don't be too concerned if it doesn't work immediately. I was beginning to get worried as I couldn't tolerate Cyclo and some other treatments weren't an option due to kidney failure. I began to think if RTX doesn't work for me, I'm out of options and domed. But I am now slowly improving.

[Bloom]

Hi Max,
Thanks for your advice. I haven't had hepatitis B and the bronchoscopy appears to be to rule out a treatable infection given the appearance of my CT scan.
Bloom.

[Bloom]

Hi Gilders,

Thanks for your advice. I'm glad you're feeling better now. I have been on prednisolone since December 2014. I am now on 10mgs daily. I feel pretty despondent about any treatment working. Wegs doesn't seem to have affected my kidneys, although sometimes I do have blood in my urine but I suspect this is just bladder irritation from cyclo and methotrexate.

I am thinking about stopping treatment, I have been told quite clearly that life expectancy without treatment is poor, although I guess most of us know that. I feel though, that if treatment hasn't worked and the side effects are not good, I'm not sure about continuing. Steroids are reducing my bone density, I have severe osteoporosis. I hope to get to Australia to see my grandchildren next month.

I have this theory that the only result of treatment is that the Wegs is getting stronger, not rational I know!

Bloom

[gilders]

I really wouldn't stop the treatment. I know that being on treatment since Dec 2014 seems a long time, but with Wegener's improvements can be very slow. My most recent relapse began in Oct 2012 and I am still on Pred and Rtx after a long period on Azathioprine. I think I'm heading in the right direction now, but wouldn't like to think where I'd be at if I hadn't had any treatment.

[Birdie]

I feel pretty despondent about any treatment working. Wegs doesn't seem to have affected my kidneys, although sometimes I do have blood in my urine but I suspect this is just bladder irritation from cyclo and methotrexate.

I am thinking about stopping treatment, I have been told quite clearly that life expectancy without treatment is poor, although I guess most of us know that. I feel though, that if treatment hasn't worked and the side effects are not good, I'm not sure about continuing. Steroids are reducing my bone density, I have severe osteoporosis.

What makes you feel the treatment is not working? Sure there are side effects but the side effects are not so bad considering the alternative of letting Wegener's run it's natural course. For me, that would have been only a few more months, three and a half years ago.

I'd be more concerned about the blood in urine issue. First hand/severe experience tells me that "bladder irritation" is putting it far too mildly. I did a year and a half of 150 mg cyclo, a year after switching to Aza the bladder issue caused by the cyclo was very nearly the last straw for me. I suggest taking the issue very seriously, get medical attention directed that way as soon as you can.

[Jaha]

Bloom, I have been where you are at. I have taken every tx there is and RTX 7 TXs, it seemed like nothing was working. I have had a lot of complications from all of it. I dropped taking Cellcept daily and I'm now just doing the RTX every 6mos, along with Preds, Bactrium (3 times a week) and all the supplements. At first when I did RTX, they always kept me on my daily chemo with it and I always ended up with infections and on antibiotics or in the hospital. It seems like this last RTX took awhile to kick in but I think I'm doing better with the Wegs. So what I'm saying is one size does not fit all and I think that some of the complications really throw us off with whether our txs are working or not. All the best to you, hang in there.

[drz]

Progress in treating Wegs is seldom a straight line but usually many ups and downs which is why we often refer to it as a roller coaster ride. Bad times can hang on for what seems endless and some times this ends with a loss of life as we have experienced the loss of several of our members. But usually the outcome of correct treatment is improvement and often results in a drug induced remission. A few lucky ones even attain and maintain a successful long term remission without any maintenance drugs. Without treatment decades ago the average life expectancy after discovery of Wegs was usually a few weeks or months at the most.

If your treatment does not seem to be working for you or if you are searching or hoping for a better outcome and faster progress it behooves you to consult with a recognized expert to see if there is a better course of treatment that might be more effective. Part of good treatment is also some concurrent counseling and information about your treatment plan to help you accept and deal with the uncertainty of any treatment and to provide encouragement to help you work toward improvement if possible or prepare for the alternative if necessary. Depression is often a typical side effect from having a chronic illness but that can also usually respond to proper treatment.

Have you discuss your feelings and concerns with a trusted health care provider?

[nagesh]

My son diagnosed in 2009 with involment of kidneys eyes joints and skin,was on 6 cyclo infussions followed with azoran, bactrim & pred fully off symptoms, in 2013 had a flare in eyes and kidneys anca positive treated with rituximab 1 gm X 2 infusions, then all the symptoms cleared, followed with maintenance of azoran,pred and bactrim.
recently his protein in urine started raising, no other symptoms with anca negetive doctors assumed it as flare so as to not to take risk recomended rituximab 1 gm X 2 and 6 weeks back it is given, now, after six weeks protein leakage further more gone up from 1800 mg to 5500 mg.
worried about kidneys, usually how long it takes for rituximab to work and how better it works for kidneys,
Rheumatologist and nephrologist asked to repeat urine tests again shall meeting the doctros tomorrow.
any inputs are welcome

[Pete]

Could be kidney involvement resulting from GPA. Could be something else. Ask your son's doctors to investigate other causes. Just because he has GPA doesn't mean he can't have something else...

[nagesh]

Thanks Pete

Point noted, They are planning for kidney biopsy.