What my Rheum said about Rituximab for Sjogrens

[Patty]

I know there has been interest in whether or not Rituxan/Rituximab helps with Sjogrens. It seems to help some and do nothing for others. I had remarkable improvement - as in virtually no Sjogrens symptoms when Rituxan kicked in. I am on Rituxan for vasculitis, not Sjogrens so I asked my rheum about it. She said that although trials have not been done, her experience is that Sjogren's patients who have not yet had tissue damage improve, while patients with long-standing disease and damage do not improve. Basically, the Rituxan eliminates the B-cells which are a factor in Sjogrens, RA, lymphoma and vasculitis so the disease is controlled, but a person with damaged tissue would still have dryness etc. I thought that was interesting.

[4Kids]

I wonder how one would find out if you have damaged tissue? I think all of mine except my right submandibular are just fine. I don't think my rheumy would consider me because I am seronegative though. I wonder...

[Styx]

Glad you're feeling better on rituximab!

There have been thorough trials with rituximab, and they demonstrated improvement in Sjogren's, though it was quite modest.

What kind of vasculitis do you have? I'm also using rituximab for suspected Wegener's (though we still can't get a positive biopsy). Unfortunately, the last round was more effective for the Sjogren's than the Wegener's

The first round of rituximab I did was 1000mg 2 weeks in a month. This last round I did 375mg/m2 once a week. It shocked me how much my mouth dryness improved with the second round, but no improvement in eyes (as the studies kind of support).

Styx

[CMNK12]

  I have pulmonary inflammation... any thoughts? Cellcept at 2000 mg and pred at 20 mg a day is not working so far? Any little task makes me short of breath and makes me cough. Do you think rituxan would help this? CK

[mshistory]

  I have pulmonary inflammation... any thoughts? Cellcept at 2000 mg and pred at 20 mg a day is not working so far? Any little task makes me short of breath and makes me cough. Do you think rituxan would help this? CK

I have chronic pulmonary inflammation too; I *think* higher doses of Imuran are helping, and I know steroids help but obviously aren't a good long term solution. Will be interesting to see if anyone has had a good outcome with Rituxan/Rituximab for their pulmonary symptoms.

[CMNK12]

  Mshistory, thanks for answering me. I was previously on imuran at 150 mg a day and it just was not working. How much are you taking?  What are your symptoms like if you don't mind me asking? My doc has switched me to the cellcept back in November,but I really have not gotten that much if any better yet. I can sit ,but activity is what gets me. It is so frustrating to want to do things and then you get winded and start to cough and sputter. I sound like a smoker but I have never smoked. I have declined even in the last 6 months. I am looking for any and all info. And prayers. CK 

[Katybarstool]

Ck, that sounds awful. You have my prayers.

Hugs
Kathyx

[mshistory]

  Mshistory, thanks for answering me. I was previously on imuran at 150 mg a day and it just was not working. How much are you taking?  What are your symptoms like if you don't mind me asking? My doc has switched me to the cellcept back in November,but I really have not gotten that much if any better yet. I can sit ,but activity is what gets me. It is so frustrating to want to do things and then you get winded and start to cough and sputter. I sound like a smoker but I have never smoked. I have declined even in the last 6 months. I am looking for any and all info. And prayers. CK

I'm just recently up to 150 mg daily. I just went off daily Relafen (an NSAID), and am not currently on Plaquenil although I'll probably go back on it (or at least try it again) in the near future.

My symptoms for the past year (which also have progressively worsened) have been chest pain and pressure (the pressure has been constant - like a weight on my chest); coughing, particularly when taking deep breaths, upon exertion, laughing too much, or sometimes just out of nowhere; shortness of breath.

I've had PFTs, X-Rays and a CT scan (over a year ago for the CT scan) and there's no fibrosis or scarring; it's like living with uncontrolled and persistent asthma although I passed the methacholine challenge so pulmonologist said it's not asthma! I am also prone to pleurisy and bronchitis, and last time, I got a Celestone shot (a steroid shot) and for almost a week, my pulmonary symptoms were vastly improved and I didn't need my albuterol at all. After about a week, the symptoms returned.

The past few days haven't been as bad; I'm hoping the higher dosage of Imuran is knocking down this inflammation we haven't been able to control for over a year and a half!

I hope you get some answers and effective treatments soon.

[CMNK12]

  Thanks Kathyx and Mshistory. I am hoping for relief soon but who knows..we all are.
My Ct looked ok 6 months ago but I am worse now so who knows? My symptoms seem alot like yours...I use albuterol too. Do you still work? I was but I am on leave of absense right now because of all this. I just don't know what to expect anymore day to day or even what to do. I can't even come up with a plan because I never know how I will feel...it is so frustrating. Any advice? I have never been here before. Helpless.

[Katybarstool]

CK, I had similar symptoms about 8 years ago. It was eventually diagnosed as asthma and 'mild' bronchiectasis. I use Tiotropium Bromide, Salmeterol and Salbutamol, and have been good for two or three years now.

BTW Yes, I still work, but am down to 28.5 hours each week.

Hugs
Kathy

[Patty]

Styx,
My rheum calls it "SSV" = Some Sort of Vasculitis - LOL! It's ANCA positive involving the small blood vessels but we can't tell if it's Wegeners or MPA. I have many features of Wegeners and I think that is the most likely. I just had my second course (2 infusions), 6 months after the first course of infusions. My rheum thinks I will get more time between them now. How close together are your infusions?

I'm sorry I don't know anything about Rituxan and the pulmonary problems. They sound terrible to live with.

[Styx]

Every six months we do 4 weeks of 375mg/m2 per week.

Do you have sinonasal involvement?