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.

[BonnieB]

Thanks for your help, I'm sorry to make you relive all this. Yes, though we don't have a Weg's specialist here- but we go back and forth to Az., where the folks at the Mayo are catching up quickly with the help of Dr. Spechts in Rochester- he is about to publish a 5 year study just on this topic- but most folks aren't waiting and have proceeded to use rituxan already. My son feels his intermittent flares of inflammation in joints and tendons are due to cellcept so he stopped it- but I know its the wegs-he won't relent for now- but I believe he'll have another episode in the next few weeks and then we'll see. Thanks again-

[Doug]

Is he taking his medication on schedule and at all? There is a temptation at some points in your treatment to lighten up of the drugs or not take them because, well, the drugs are working and dealing with the root cause of the joint pain and other symptoms. Just asking...!

[Sangye]

Bonnie, your son's joint pains are not likely to be from the Cellcept but from active Wegs. His Wegs might be "breaking through" the Cellcept. That's what happened to me. More on that another time if you want.

I saw my Wegs doc today. He said ritux "wipes out B cells for 1 year, give or take 6 months." Since I don't have other options, and since it does seem that the rtx is starting to work well for me, he said we'll either do another round of rtx in the spring (6-month marker) or next October (1 yr marker). (One round = 4 weekly infusions). We'll go by blood tests (if the B cells return to normal levels) and symptoms, of course, to avoid a flare.

He said even though ritux has been used for NHL for some time, its use for Wegs is still so new that they don't know the long-term risks. He doesn't yet feel comfortable doing more than 5-6 rounds on someone as young as me (46). But that would be a long ways off anyway.

He has 30-40 patients on ritux, and has had only one develop an antibody to it. That patient can no longer use it as a result. This is a big risk--another reason why they are conservative about doing many rounds. The more times you "present" a foreign substance to the body, the more likely you are to develop an antibody to it.

Meanwhile, in January I'm going to start dropping pred very slowly. I'm on 4 mg--can't even tolerate 5 mg anymore because I started on such crazy high doses. He said to drop it by 1 mg per month, and to stay at the new dose longer than a month if necessary.

So it was a good visit. I'm hopeful. I feel so lousy today--extreme fatigue-- but my heart is feeling more hopeful that I might see remission someday.

[Sangye]

Bonnie, the danger of him stopping the Cellcept is that it takes one month for it to kick in when he starts it again. So if he stops it and then figures out that he's flaring, he's in deep doo-doo. The Cellcept won't have enough time to start working. It could be deadly. Please tell him about that.

Cellcept doesn't cause joint pain. Wegs does.