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!

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.

[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.


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…

[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.