Rituxin maintenance dosing

[mmthomm]

I'm starting my first maintenance dose of RTX this week and I'm just curious what type of dosing some have received as I know the research is pretty lacking on the protocols for using interval RTX to maintain remission. I was diagnosed in Nov. 2013 after WG grew extensively in my head (skull, meninges, etc) and did 4 doses of RTX in December. My current regimen (which appears to be working) is prednisone tapered to 10mg/day (thank God), methotrexate 15 mg/week and Bactrim. My rheumatologist has planned for two doses of RTX in June with two weeks in between...please let me know what your experience has been using RTX to maintain remission. Thanks!!!
Maureen


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[mishb]

Hi Maureen,

I'm glad you are getting what some here call the wonder drug - RTX

I have no knowledge of the protocols for RTX except from what I read on here.
You will find many posts about it.

Other than to wish you good luck and better health, I hope that someone comes along soon, to answer your questions.

[LisaT]

Hi Maureen, I'm sorry I don't know the answer to your question and am answering it with another question. But first, I'm glad to hear you've achieved remission! YAY! :w00t::hug3:

I'm curious what your symptoms were when WG was in your head. I've been having awful headaches and my head is about the only body part nobody has scanned to date. The headaches feel like muscle tension and/or joints, (especially jW and the base of my skull)? but I would like to rule out head involvement just to be on the safe side obviously. I notice my brain fog is worse and I'm doing a lot of things like forgetting what I'm about to write down (so I don't forget it lol), or walking into the pantry and thinking, now what did I come in here for? But I'm also 45... And going through peri menopause. So there could be other reasons for that. I've been dumbing down since having babies. I used to be smart. :confused1:

[windchime]

Aw Lisa, you're still smart. As far as the forgetfulness goes I think menopause has a lot to do with things. I do the same thing. The ole' CRS syndrome.

[Alysia]

Lisa, I agree with Cindy, you are not only smart but also kind and sweet.
:back on topic:

rtx - maintenance - 1000mg in one IV or 2X500 mg with 2 weeks between.

[me2]

My last maintenance dose was a single shot of 1000 mg. I also take methotrexate and am currently at 15 mg pred (for four days, keeping fingers crossed)

[mmthomm]

Hi Lisa! Thanks for the response. It sounds like some imaging of your head would be a good idea. In hindsight I definitely had the sinus symptoms for a long time but what drove me to the doctor was hearing loss and excruciating headaches. The WG had exploded so much in my head that i had two blood clots in my head and that was partially responsible for my headaches but I also had a lot of enlargement of some of the muscles of the neck that attach at the skull base so I had massive headaches from that. Further, it had grown in my pituitary gland causing diabetes insipidus...long story short - I think an MRI of your head is probably a good idea. :-)


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[MikeG-2012]

I'm starting my first maintenance dose of RTX this week and I'm just curious what type of dosing some have received as I know the research is pretty lacking on the protocols for using interval RTX to maintain remission. I was diagnosed in Nov. 2013 after WG grew extensively in my head (skull, meninges, etc) and did 4 doses of RTX in December. My current regimen (which appears to be working) is prednisone tapered to 10mg/day (thank God), methotrexate 15 mg/week and Bactrim. My rheumatologist has planned for two doses of RTX in June with two weeks in between...please let me know what your experience has been using RTX to maintain remission. Thanks!!!
Maureen

Maureen, i did two doses of RTX two weeks apart as part of the six month protocol. I had four in November, all a week apart. My maintenance is Azathioprine and my pred is down to 7.5 on my way to zero, I hope.

my flares have been all sinus with headaches that were off the pain chart. I had several weeks of 10/10 on the pain scale. After getting the first RTX infusions and a boatload of pred to start, the headaches went away. I do have semi-permanently blocked upper sinus passage, that when the weather changes, I am miserable for a few days.

[LisaT]

Sorry for detouring your thread and thanks for the advice… :cool1:

[blu4runner]

I am actually in a clinical trial at UPenn in a study of RTX for remission. Once I initially finished the 4 weekly doses I get RTX 1000mg every 4 months. I also take prednisone 5mg a day. It has worked good so far. I started the RTX protocol last August.

[marta]

My doc refuses to use RTX for maintenance for me. We use Imuran for maintenance. I went to her a couple of times last year thinking things are smouldering and she explained to me why she doesn't want to use it. She said that there is no info on long term side effects. Her concern is that it might mess up my bone marrow's ability to make blood. Also it's the only one I have available as a big gun (CTX is no longer an option for me) so she doesn't want to use it and loose efficacy of the drug for when I really need it to beat down a flare. She said she wants me to be a healthy 70+ year old, and I'm totally on board with that. I trust her completely and her points make a ton of sense to me, so I've only had RTX twice to beat down the beast, last one was January 2012 (first round March 2011 when we realized the CTX isn't holding up its end of the bargain.)

She is a good doc, trained at Mayo, worked at CC, specializing in Vasculitis. She knows her stuff, and has many WG and Vasculitis patients, a bunch of which I sent to her - ha ha.

[pberggren1]

I get one infusion of 1g every 6 months or close to it. I don't want to take it as maintenance but I have no choice really. My disease is so severe that it requires RTX to be used as a maintenance drug. Most people don't have severe enough disease to warrant using RTX as a maintenance drug thankfully. It is true that there is not much data out there for RTX used for Wegs maintenance but some good data is coming soon up the lines.

[Alysia]

I get one infusion of 1g every 6 months or close to it. I don't want to take it as maintenance but I have no choice really. My disease is so severe that it requires RTX to be used as a maintenance drug. Most people don't have severe enough disease to warrant using RTX as a maintenance drug thankfully. It is true that there is not much data out there for RTX used for Wegs maintenance but some good data is coming soon up the lines.

my WG is mild but still rtx is my maintenance med because that mtx didn't work on me (didn't do anything positive against wg symptoms, just hair loss and more susceptibility to infections) and I can't take Imuran because it caused me vommiting and dieahrea.

[mmthomm]

My doc's thought is that manifestation of Wegener's was so bad that we can't risk a relapse so using big guns from the beginning...I can definitely see where they are coming from with not knowing what the long term side effects of Rituxin and wanting to be cautious with that...


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[pberggren1]

Ya, there are some where RTX is the best option for maintenance. If other drugs do not work and RTX seems to work then I would go with that option.

[mmthomm]

I've been really pleased with how it's working so far and even happier with the lack of side effects! Thanks for weighing in Phil


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[pberggren1]

Most of us are blessed to be able to use the RTX for sure.

[me2]

http://3.bp.blogspot.com/-X_4TIzRwNcc/UZtaPgaKhMI/AAAAAAAAEMA/HblEf_ZuhJw/s1600/528448_405408329566380_95360947_n.jpg

[LisaT]

It certainly seems like the wonder drug. I understand (finally) why it is not being prescribed for me. (They're seeing if they can 'save it' and keep things under control with Imuran and pred and bactrim... Seems it might be working). I'm glad it's there for those of you who need it! When it is referred to as a maintenance drug does that mean you will need infusions indefinitely, or do you at some point stop and see if you can maintain remission without it?

[jvilner]

Lisa I'm on 200 imuran 17.5 prednisone weaning to 15 bactrim vit d. Was also told to hold off on the rtx for when/if need. My ears fill with fluid if I have no tubes. But it does not become glue ear like before. I have swallowing problems that is still not resolved. I choke on pills so I crush all. I don't know what they are waiting for on how to tell I'm in remission. Joint pain is gone. I get tired from the meds I think and have foggy head. I hope for the both of us that things get under control!!

[Alysia]

Lisa I'm on 200 imuran 17.5 prednisone weaning to 15 bactrim vit d. Was also told to hold off on the rtx for when/if need. My ears fill with fluid if I have no tubes. But it does not become glue ear like before. I have swallowing problems that is still not resolved. I choke on pills so I crush all. I don't know what they are waiting for on how to tell I'm in remission. Joint pain is gone. I get tired from the meds I think and have foggy head. I hope for the both of us that things get under control!!

Hi Joyce, check if it is a matter of money. sorry to say. but sometimes this is the issue. if the Imuran is not helping, insist on getting the rtx.

[jvilner]

I'm sure I told my rheumi that I have supplemental ins. But will mention again at next visit. She keeps telling me I'm not there yet. Thanks for support. Shouldn't I give these type of meds some time to "work" though?

[Alysia]

about 6 weeks is the time for Imuran or mtx to start working.

[jvilner]

6 weeks really? Omg then I need another treatment. The only thing it helps is keeping the fluid from becoming glueish. But hearing is effected. Will have to press rhemin on this.

What I understand is remission means symptom free. Then my hearing should come back or just be better? Ent told me last week to get it into my head and get used to my new normal. Is this acceptable?

[Alysia]

6 weeks really? Omg then I need another treatment. The only thing it helps is keeping the fluid from becoming glueish. But hearing is effected. Will have to press rhemin on this.

What I understand is remission means symptom free. Then my hearing should come back or just be better? Ent told me last week to get it into my head and get used to my new normal. Is this acceptable?

joyce, In some cases the hearing is getting better. in others it is not. again, I suggest you to go to the ENT that I reccomanded you about.
ד"ר רועי לנדסברג. רמת החייל תל אביב
he is the only ENT in Israel that saw as much weggies as at least 10 weggies. he will be able to tell you about your meds as well.

[murmur]

I have been in remission for three months now, and I had my first maintenance treatment a month ago. The nurses will typically give benidrill and Tylenol, so you won't have a reaction. I have to get it every three months. It shouldn't make you feel any different (if anything better) but you need to be cautious with keeping clean because it does wipe out your B cells so the ANCAs can no longer produce.