Rituximab

[timbo vic aust]

i was reading margarets concerns about other drugs not working for her brother i have had one course of rituximab and am due for another on the 7th december and same results so far as so many others NO SIDE EFFECTS the only effects i had on the day were the jitters and shakes a little not much to put up with really if you can put up with the disease itself hey my rheam swears by this drug he says he has 10 patients under him with wg in victoria australia each is different as in needs for the drug . he told me the other day one fellow only had to have it once but one of his long term patients has had 8 doses so everyone is different but the main feedback i hear about it is it is hard to get it prescribed because it is so expensive compared to cyclophosmamide ( phew thats a long one )
so the hospitals dont like handing it out willy nilly hence why a lot of people get put on the cyclophosmamide. but the biggest difference between the two is rituximab only kills the bad cells which are the b cells it does not TOTALLY wipe out your immune system like the cyclophosmamide does i know which one we should be all pushing for . but like i read others saying as well it is trial and error with a lot of drugs and not all will work for everyone
i myself am on rituximab iv 1000mg methotrexate tablets 20mg , vitamin d hi potency, calcium tablets , and folic acid tablets 10mg , im not sure what other drugs they use as well but i seem to remember seeing imurin and bactrim on here somewhere but i dont know what they use them for ?
thanks Tim.

[Sangye]

My Wegs doc at JHU is very excited about ritux, too. I think all the Wegs specialists are. Cytoxan doesn't just wipe out your total immune system (bad enough!), it mutates DNA and causes widespread damage and toxicity. It's chemo, after all! I'm sure hoping that in the future no one will have to use cytoxan. It's a brutal drug.

[BonnieB]

I'll be interested to hear what you felt after your second course of rituximab. My son had his first course in sept-oct and I will campaign for him to get another 6 months later. I don't want to wait until he has signs or symptoms of recurrence- he lost so much lung and kidney function this summer. Are you already on schedule for a third round? Hope you are feeling well!

[Sangye]

I had weekly infusions for 4 weeks in October. That's the typical schedule. I see my Wegs doc tomorrow for the first follow up since then. He had said that we're going to play it by ear and not automatically repeat the 4 infusions in 6 months. The reason was that one round is often sufficient to induce lasting and/or long-term remission. He's also concerned about maintaining me at that level of immune-compromise-- much greater level than with Cellcept or other remission-maintenance drugs.

I'm doing much better lately. Not having the terrible joint pain that I've lived with for 4.5 yrs now. Easier to breathe. So something is better!

I'll post tomorrow when I know more!

[BonnieB]

are you still on cellcept after rituxan- thats the recommendation at present for my son- not sure why- that lowers T cells and his B cells are already wiped out. He is still tapering off prednisone. very slowly-have you had more than one round of rituxan? do you feel well enough to work, go to school, exercise? trying to figure out what I should encourage. May be just to soon to tell...

[Sangye]

My doc had talked about getting the current flare under control and then using Cellcept at a higher dose (3,000 mg) to keep it under control. But he wasn't set on anything-- really just wanted to see how Ritux works for me.

The month of ritux was the first time I've had it. I've had severe complications for 3.5 yrs and have never been able to return to work. I know I will at some point, but I have to be way stronger than I am. I have certain complications that we're stumped by. I can only stand about 10 minutes without large amounts of fluid pooling in my lower extremities. So work is not on my immediate horizon.

I had extensive damage to my adrenal glands due to being near-death for so long pre-diagnosis and then adding cytoxan and massive pred (1,000 mg/day). In addition, cytoxan is dangerous for me-- my Wegs specialist now says I can never take it again. Much too toxic, even at a subtherapeutic dose.

Everyone is very individual, though. I could never extrapolate my reaction to ritux to anyone else. Do you have a Wegs specialist for your son? It's vital.

BTW, Cellcept inhibits both T and B cells. A few months after ritux, the B cells begin to return (timing varies). For some people that can cause a flare. If they put him on Cellcept it might maintain remission without having to do more ritux. This is a very good idea. Cellcept is very well tolerated. I was on it for 2 yrs and didn't have to take pred. I flared because I needed to be on a higher dose. I was on 2,000 mg. I always felt like it was a barely therapeutic dose. Turns out I was right. By the time we increased it, the flare was in full swing.

[Jeff]

Hi Sangye,
I have seen alot of your posts since I found this site, very good info.
I have a boy in college that was diagnosed with WG his senior year of high school. After 9 months of Metho and tapered pred kidneys showed some activity. The doctor then tried 2000mg cellcept and tapered pred again. Well, nine months later, more kidney activity again.
The doctor is now talking about Cytoxin. With everything I have read about it, it sounds scary.

I mentioned the rituximab to the doctor, and he told me it was too expensive. As a parent, you try to get the best help you can for your child. Should I press the issue to get this drug even if I have to take a loan out to get it? Or do the doctors consider it a last resort drug?

[Jack]

Hi Jeff,
It is easy to get scared about using Cytoxan when you read about the potential side effects, but there are many (the majority?) of people on here who have used it successfully. The dangers of using it increase with the total dose consumed, so a single episode of treatment (6 months?) should not be too much of an issue. I have had multiple sessions of using it and have now come to the point where the risks are too great to continue, but my doctors are well aware of this and would use something else if I should need it in future. Generally, they like their patients to survive the treatment.

[elephant]

Jeff does your son go to a Wegeners specialist? If so the Rheumatologist can write/call the insurance to get them to pay for the Rituxibam. My Rheumatologist mentioned that if I need something stronger that is what they would put me on RTX, not the cytoxan. Like Jack said the cytoxan can put people in remission if used properly.

[JanW]

Hi, Jeff -- my rheumo also told me that they could go to bat for me with the insurance company and get them to pay for rtx. I called the insurance company on my own (I was only diagnosed a month ago) and found out that I don't have to 'fail' on other medications to get rtx...the doctor just has to write a letter seeking precertification. Maybe this is the case with your insurer. You should call and see what the deal is -- you don't just have to take your docs word for it. I'm sure he deals with a lot of insurance companies and couldn't possibly know the ins and outs of each policy.