Any Ritixumab successes?

[margaret]

Hi All,

My 18yo brother was diagnosed with WG back in April and has been in the hospital pretty consistently since then. In April his doctors started him on oral cytoxan & prednisone. This was only supposed to take 3-6mo to help him get better, but in reality it didn't help stabalize the disease at all. Well, it did help his lungs, but every other part of him worsened. Besides the fact that it made him intolerably nauseated (he lost loads of weight), his kidneys worsened on that regime. He was switched to IV cytoxan which caused the disease to reactivate in his lungs (he's already had some severe hemmoraging which necessitated 4wks of ventilation under heavy sedation).

Our parents (who are both doctors), have moved him from home to the Mayo Clinic in S'dale, AZ. The doctors here are consulting with those in Rochester along with some doctors at Johns Hopkins. They've also consulted with the Cleveland Clinic.

The consensus right now is to put him on Ritixumab after he completes 5 days plasmapheresis. This will be his 3rd round of plasmapheresis, in the past its helped his kidneys & lungs for a short time. From what they've said, Ritixumab a good drug for those who dont respond well to cytoxan.

Does anyone have any experience with it? I'll take both good & bad - seems like every treatment he's been offered has been the one to help get him to remission (of course, that hasn't happened).

Thanks!

[Sangye]

Hi Margaret,
Welcome to the group. I'm sorry to hear what your brother is going through. So young, too. I used to go to Mayo AZ (after more than a year of awful local docs). I'm VERY happy to see they're consulting VF specialists, because there's no Wegs specialist there. Dr Mazlumzadeh sees Wegs, but not all day every day, like the VF docs. He was my rheumy and was way better than my local docs. I didn't realize how much he didn't know until I got to Hopkins.

I haven't had rituximab myself. I've heard great things about it, though.

As far as getting to remission, it's not as easy or as likely as you'd think. Wegener's treatment is like a spectrum, with active disease at one end and no drugs or symptoms ("full" remission) at the other. Many people have to remain on drugs indefinitely to maintain a remission, and many go off and on them. Fortunately, there are newer, less toxic drugs that make that possible.

With Wegs, nothing is written in stone. You can slide anywhere along the spectrum at any time. It has a mind of its own, that's for sure.

[Jack]

Hi,
Sorry to hear that your brother is having such a hard time, but these are very early days in his treatment. Knowledge is improving all the time, but in my own case, although they brought my condition under control in a matter of days, it took several years to establish a regime that would maintain remision without being too toxic. This was nearly 25 years ago. I think there is a move these days to treat the disease less agressively - I'm not sure if this is a good thing or not.

[Martin Thomas]

Rituximab was a literal life-saver for me. All the conventional treatments failed including cyclophos. At a recent consultation with the infamous Dr David Jayne at Addenbrooke's Hospital here in the UK he suggested that they are finding it can take up to 18 months for the drug to work fully although initial successes do occur much more quickly (about 3 months in my case).

They have changed their regime a number of times over the last 3 years in accordance with their results and their current practice is here. In my case and with many others it's now administered in 5 doses over 2 years (i.e. every 6 months). After the initial dose which may be spread over 2-4 weeks the remaining doses are usually given in a single session and administered irrespective of B cell levels.

The great thing about Rituximab for me (apart from the fact it works!) is that it had no side effects what so ever. I have heard of rare cases of patients being adversely affected but it's so much safe and not damaging like other chemo. and steroid treatments.

[Gary]

Hello Margaret, soryy to hear about your brother. As everyone says, it has a mind of it's own but, thing do get better over time. welcome to the group.

[margaret]

Thanks everyone... we're hoping he'll have some sort of success with the Rituximab, even if it means he's able to be out of the hospital for more than just a week. When he was first diagnosed, the docs (including those at Cleveland) all told us that the cytoxan/pred treatment had never failed for any of their patients. After talking to the docs at Mayo, we're seeing that cytoxan doesn't work for everyone. In my brother's case, the cytoxan helped his lungs, but it did not help his kidneys which were failing rapidly. We know that the rituximab treatment is fairly new and that we've got to play this game on a day to day basis, but we're still hopeful.

It looks like the plan for now is to keep him on some heavy steriods, do 5-7 plasmapheresis treatments and then start the rituximab. He'll do the rituximab infusions once a week for 4wks. Hopefully he'll be able to go back home to TX late next week after his first infusion and then return to AZ for a follow up in a month.

The docs here are consulting with Dr. Specks in Rochester, MN - anyone seen him before? He seems to be the one really working on rituximab treatments...

Thanks again.

[Sangye]

Martin, thank you for that info on Rituximab! Maybe Andrew can make the attachment a "sticky."

Since it takes so long for it to fully work, what do they do meanwhile for treatment?

I'm currently back on ctx (no pred) for a flare. My doc plans on using it for 3-6 months max, then switching back to Cellcept. I was on Cellcept and tolerated it very well. I'd felt for several months that we needed to increase the dose. Once we finally did, it didn't kick in fast enough to stop the flare. My doc thinks the higher dose will work fine for me after the ctx, but he's researching if my insurance will cover ritux, also.

I read on the attachment that ritux interferes with coumadin. I'm on coumadin for life, so I wonder if it's even possible for me to use it.

[Doug]

Yes, thanks for the attachment, Martin. It was very informative. Though I don't have immediate need to know about it, it's good to have prior knowledge of what's taking place in treatments these days in case I need to know about it come a flare.

[Cindy M]

Wow Martin, thanks for that info. I just finished my second round of Retuximab and have been searching to see how long it takes before it fully works. It's longer than I was hoping for but at least I know have a time line in which to work with. I have previously been on Methatrexate, and now I am on preds (80 mg) cyclo (125 mg) and the Retuximab.

[Cindy M]

Hi Margaret, sorry to hear about your brother. This disease is like no other, I find myself up one day and down another. I have just finished my second round of Retuximab on thursday. I have tried methatrexate but that did not work for me, I am also on cyclo and preds. I hope this works for your brother.