Rituximab (B-cell Depletion) a good treatment for primary Sjs?

[Patty]

I can update you on my experience - I am over a month out from my second infusion and just getting my energy back. I was very fatigued and could do almost nothing physical for a month afterwards. I mean NOTHING physical.

So ... I lost 2 months to feeling very poorly during and after infusions. If I do this every 6 months that is costing me 4 months out of the year. And infusions are $19,000 + so that is about $80,000 a year. Thank God for insurance. My cost is $3,000/year for deductible and co-insurance.

I do feel wonderful now. No symptoms except from damage that is irreversible and very good energy. I feel better than I have in many years and am starting to exercise, taper prednisone and even look more like my old self. I find I am interested in life again and feel like I have gotten my "spark" back.

The big question is: How long will it last? I had great results with Cytoxan infusions but was sick again within three months. Keep in mind I am getting rituximab for CNS vasculitis which is quite serious and can damage the brain, so for me rituxan is worth the physical and financial cost. Also, I had tried everything else out there. I have been treating for 6 years. Also, remember, everyone reacts differently to medications.

[irish]

The way I understand it the Rituximab kills off the B cells and then one has to wait while the body makes more new b-cells and hope that they do come back and come back in a more healthy condition. Not anything to be taken likely. The chances of death caused by overwhelming infection is not to be taken lightly. This is why the docs make sure that a patient has tried all the other drugs first.

Many people do very well on the Imuran, cellcept, etc. type drugs and have years of much better health. As far as getting rid of the dryness, that sure is up for grabs. It is one of these things that is not for certain. We know that if the salivary glands and moisture glands in the eyes and other organs when killed off dead can't be revived and this is known as the damage that is irreverible.

I also want to say that many people think they are dying when they have certain symptoms and others can just keep on keeping on in spite of it. This is hard, but not impossible. This is why the doctors don't rush into the heavy duty treatments.

It really is better to keep on keeping on as long as possible. I know that a lot of people here have worked with many health issues. I worked when I was so weak from undiagnosed myasthenia gravis that I could hardly hold myself up. This included cleaning apartments and scrubbing bathroom floors when the assisted living was short of help. People asked me why I didn't quit work and I told them that no one had told me I was sick so I would not give up until I knew what was wrong with me.

Many of us have worked in great pain, with teeth missing and terrible dental infections, balance issues, weakness, numbness, fatigue beyond description. It is amazing what the human spirit can endure. To sit down and wait for death, or whatever the heck the next episode is, does not appeal to us.

My hubby who is an autoimmune patient for many years, along with multiple other issues, always says that "People die in bed" so that is why he gets up and keeps moving. I guess the bottom line is that we all do the best we can and sometimes suffer a lot. But, eventually, there seems to come a time that a medication is found and given that alleviates much or some of the suffering. Life is not without its challenges and our ability to perservere makes a huge difference.

So, Sven, I would advise that you think about the fact that the doctors will want to use some of the oral medications first as that is most likely what will happen. You are miserable but not sounding like Rituximab will be considered due to the criteria needed to get on the list-so to speak. Just my humble thought. I hope that you can get some relief soon. Irish

[Patty]

Irish,
You are right about the dryness - I have seen no improvement with that with the rituxan. I am not having it for Sjogrens, but for vasculitis. The thing that seemed to help with eye dryness was fish oil and plugs. I rarely use drops now.

[lostone]

Unless your crawling around on the floor and your bosy is going insane,, do not get it, I am one of the lucky few who had it and it did nothing but make me sick as a dog,, dont jump ahead of yourself looking for a cure that isnt tehre,, its not worth it,, this was same rheummy who had me try a pulse steriod treatment,, 1000mg a day by IV for three days,, yep,, 1000 mg,, by day three I had no clue what country I lived in ,, of course it did nothing,, so stay the course on the mild stuff,, theres a heavy heavy price to pay for the hard stuff

[gurs]

Yeah, I felt actually more fatigued than before I had the rituxan...and my dryness seemed worse. But, I think I had less flares. I havent had it now in 2 years, and my body just is flaring all the time? I think it may do some good. I think the plaquenil is the only thing I noticed that helped with the dryness. You also have to watch the medications and supplements your taking. Even motrin can be drying...antidepressents, antihistimines, alot of natural stuff as well. Im sure we are all aware. I cant take much of anything, even though my allergies are horrible..
My medrol is also drying....cant win!

As far as the debate regarding our moisture glands... most docs said they are destroyed, but Im tending to not believe that. I can be so dried out, yet when My allergies flare, I get the fluid-running nose and my eyes get more moisture? how is that if they are destroyed? does not make sense. Im thinking its just some form of inflammatory reaction and neuro issue possibly? just my thoughts?

Gursie