are you in Ontario and have you taken Rituximab? - Desperate!

[driedout10]

Hi again,
I am having a terrible time with the SS's, in the past 3 months, all symptoms suddenly becoming very much worse so that all I can do most of the day is lay on the couch with my eyes closed, listening to the t.v. I have heard about Rituxan and want to pursue it but don't know if any docs in Ontario are even prescribing it for SS's. Can anyone give me advice on this topic? Thank you so much,
Chun

[Kendo]

Hi Chun:
I'm in Ontario and but sorry, I can't help with the Rituximab question. I'm waiting on a diagnosis and friends say I should go to Syracuse to get better bloodwork so we must live near each other. How did you get diagnosed? I've had SS-A and SS-B tests come back negative and it might be months to wait for a rheumatologist referral. I'm having dry eyes/dry mouth and poor pancreatic function for 8 months so far and take tons of calcium and fat soluble vitamins and eye drops to keep functioning while I wait.
Kendo

[ktfabian]

Kendo-

I'm not in Ontario, but I take Rituximab and have for almost two years.  It's helped considerably with my symptoms, especially the daily headaches I was having and stiffness in my hands and feet.  Overall, after the 2 infusions you get 2 weeks apart every 6 months energetic and more "normal"

My problem, though, is that I keep getting infections, and suddenly the 2 weeks between the injections becomes two months.

I'm due to have the second of a set of infusions done on Wednesday - the first was done on April 8th - but I've had pheumonia, a stomach bug and am now starting on bronchitis again, so it doesn't look like I'll be getting that infusion this week afterall.

For me, when I can get my body together and get the infusions, it works really, really well.  I'm just SO prone to infections these days that I'm planning to talk to my rheumy to seeif he may suggest something else or something to help me keep the infections away.

I hope you feel better soon, you sound like things are pretty rough, and that's never a good place to be.
Take care, Tracy

[driedout10]

Kendo, I hope you see this response as my eyes are so sore, if I write one day, I have to wait until the next to check whose written and then write back. I'm also sorry you feel so badly. Do you mind telling me what part of Ontario you live in? I live near Ottawa. Have you contacted the Sjogren's Society of Canada? They might be able to put you in contact with a good rheumy. They also have some support groups though the groups are probably finished up for the summer. But you can still contact the main contact person closest to you. The Sjogren's Society website is www.sjogrenscanada.org and their number is 1-888-558-0950 or email info@sjogrenscanada.org
I wish you all the best,
Chun

[Kendo]

Hi Chun:
I'm in Kingston and haven't found a support group here. Probably only Toronto and Ottawa have them. Thanks for the info. I'll give them a call. My optometrist gave me the name of an opthamologist with some experience but now I wait for family doc to get back and last GI test to come back so I can get a referral. I'm sure I have seronegative Sjogren's - it is the only thing that makes sense. My mom is gluten intolerant and I have gone gluten-free and feel somewhat better but still have all the Sjogren's-like symptoms. My celiac antibodies were negative before I started the diet so I am just a medical mystery. People keep telling me I am like an episode of House; ironic since Sjogren's was the diagnosis on an episode last fall!

I hope you can find some relief for your eyes. I've ended up wearing safety goggles with damp tissues on the edges and using wet compresses on my eyes when out in public when I haven't been able to read or see properly.
Kendo

[wordnerd]

Not in Ontario either but I'm starting the med next Wednesday.  I'm also rather desperate for some relief and hoping that it will help without any horrible side effects.  I'd be happy to keep you posted on how it goes....