Rituximab and Sjogren's -- Is anyone on it?

[Java500]

Hi, all.  Well, I'm newish to the forum and new to Sjogren's.  I'm having a major flare and my head is spinning from everything I've been reading -- from research to this forum to supplements -- you name it.  So if I sound a little desperate, forgive me.

So, Rituximab.  Seems like it would be a natural for those of us with RA and SS. Is anyone on it?  Has it helped?

[iraisin]

Sorry about the spinning. Are you newly diagnosed?

There's a natural progession to how we cycle a diagnosis and then living with chronic illness, and it sounds like you're starting off right on track.

I don't know the answer to the question you've posed, but many here have the same conditions as you and may have experience with that drug.

I wish you luck and good answers. Welcome to the boards.

[Java500]

Hi, iraisin, I'm not officially diagnosed, although a dentist at a Sjogren's Clinic said most likely and my rheumatologist said he'll get me formally introduced to the clinic after I return from a trip I'm on.  With the dry eyes, dry mouth, dry cough, swollen glands in my neck, and the fact that my bloodwork was negative for everything else (as well as neg for the Sjogren's antibodies), it's a good bet, especially in light of my RA.

Here's a summary of the study:  www.medpagetoday.com/Rheumatology/GeneralRheumatology/19410

It seems like it would be worth a try.  And since the study was over 2 years ago, it would make sense that people have tried it.

[iraisin]

Java,
Nancy60 just posted this link under the "please read" thread. It may be something you want on hand for future use/review as your meds change/adjust

http://pharmacy.oregonstate.edu/drug_policy/sites/default/files/pages/dur_board/reviews/articles/2012_06_28_TIMS_executive.pdf

[harrigan]

Hi Java - I had my second dose of Rituximab 4 weeks ago (1st dose in Dec 2011)  I am still on MTX too, but have been on Plaquenil, Leflunomide, Enbrel and Cimzia in the 2 years since diagnosis.  Rituximab seems to be controlling the inflammation for most of the 6 months between treatments. 

I have had a couple of pretty bad infections immediately after the 2nd half of each treatment.  It's not something I would want to take without trying other, less risky treatments first.

One thing I would say though is to make sure you push for diagnosis and try any treatments you are offered.   I probably wasted a couple of years when I should have gone to the Dr with aches and pains, and another year being diagnosed with Primary SS when it was the RA which is the real problem for me.

Let us know how you get on  xx Ailsa

[hheath]

Hi Java,

Here's a link to a blog called Reasonably Well by a fellow Sjogren's sufferer.

http://reasonablywell-julia.blogspot.com/2012/03/will-rituximab-make-my-ears-turn-pink.html

She recently started rituximab and shares her experiences.

[Java500]

Hheath, Harrigan, Iraisin, thank you all, so much!  I'll be following what I can to learn about Rituximab, as it seems promising, although clearly not without risks.

Thanks again - you guys are great and definitely make this easier, less frightening, and for that I'm grateful.

[hheath]

Java:

There's another posting on Reasonably Well this morning about research on B-cells and rituximab.  Just want to make sure you see it!