Article from TheJournalofMusculoskeletalMedicine — Continued Promise for Rituximab...

[Lightwarrior]

Oh Geez Lightwarrior.....I am so sorry for you to be feeling so very awful still! It sounds terrible. May I ask why you are still on such a high dose of pred?

Was this your first time to be treated with RTX, and are you on any other drugs for maintenance?

Many questions here...but it does sound as if you are struggling, certainly!

I go to 40mg next week. They put me up to 60 when I first started flaring. I am still on 25mg of mtx a week. Yes it is my first time to be treated with RTX.

[Dirty Don]

Isn't flaring fun friends?! As I'm reading these comments, I remember my first visit with my WG rheumy...upon leaving, she reminded me (and has done so in later meetings) that WG is 50-50 at best...maybe for a very long time if we're lucky. That may or may not be a fact, but it reminds me continually that my 'new' life is tenuous at best. 'Nuff said...LOL. BTW, RTX will be my next treatment upon losing that 50-50 bet! Hmmmmm, not going to Vegas anytime soon. Hang tough Light...

[Palmyra]

And Don...have you not been previously treated with Rituxin either?

I guess my point to all those on this site is my daughter's history. She was diagnosed when Weg was first being treated with RTX at the Mayo Clinic/ Rochester. Instead of trying other drugs (other than a very brief trial of MTX w/ pred for 3 months, which was completely ineffectual,) her first treatment was with the four infused doses of Rituximab that many on this site have now taken for some years. Cytoxin was the other obvious choice for induction, and she so far has been able to skip that completely.

I do think my daughter was one of the first, outside of the RAVE trial that received RTX from the beginning of diagnosis. Despite some episodes of serious infection, and some continued grief with her joints, she has been in a medically induced remission for going on six years. That some others with refractory rheumatoid arthritis have been treated with this drug for going on 10 years now is very positive news to me, indeed. Some on this site have had issue with RTX post infusion, but I still hold out hope for its continued success for many.

As well, I monitor sites that address multiple sclerosis and Crohn's disease and AI disease in general. Both have much higher patient pools, and unfortunate as it may appear, drug companies do target diseases with financial gain in mind prior to investing in drug development. Although Weg does not benefit directly, the drug trials and studies for rheumy arthritis are the big coat tails that vasculitis rides on.

For Lightwarrior, all I can hope for is that as you continue to decrease pred, and hopefully get off MTX as well, you may find a remission ahead of you. Please keep us posted on your progress and do stay away from germy microbes! Your immunosuppression levels are bound to be significant. Chins up and best wishes!!

[drz]

It seems that having Wegs or GPA is like living next to a volcano. It might smolder a lot or go dormant for periods of time, sometimes even very long times if we are lucky, but it can also erupt with little warning after smoldering quite awhile. It is hard to predict how it will behave.

I started my treatment with RTX and then went to CTX IV and lots of plasma exchanges and then oral CTX for months followed by generic Imuran and am now considered in a drug induced remission for past year and half. RTX is also my back up plan for any serious flare according to my Wegs consultant at Mayo. They want to save it for something real serious. I had one smaller flare treated with increased in pred and Imuran and hope I can also be a lucky one who has a long term remission.

I also hope Al's dream will become a reality and that in a few years they find ways to repair the broken immune systems. I believe those treatments will also come from the research in treating other AI disorders like Crohn's disease.

[Psyborg]

I am still having such a hard time, I am missing at least two days a week and am out of all my time off days. I feel like crap, the only benefit I see is that my joints don't hurt as much but I am also still on 50mg of pred. I did four infusions, one per week with the last one on 10/26. When do I start to feeling it? I had such bad diarrhea on Thursday night into Friday that I know I must have lost 10kg . Thinking makes me tired.

I hope you feel better soon Lightwarrior. It took me about a month after the last infusion to feel any appreciable difference. But I was on the two infusion method so not sure how that compares.

[Dirty Don]

And Don...have you not been previously treated with Rituxin either?

Nope, my rheumy is big on protocol...hers I guess...she's been treating WG for about 30 years...I guess she knows what she's doing!! LOL! She has told me if MTX doesn't do its job, RTX is next on the agenda...so far, mtx is doing right by me...haven't asked any blood cells how they're doing lately, so not really sure! hehe...

[Dirty Don]

Thinking makes me tired.

There are drugs for that too!! LOL! Hang tough Light, you're a battler, don't let the little stuff get to you...you know better...WG is what it is...we are simply the messengers to the rest of the world...what!!!!!!!!!!!!!!!!!!!!!!!!!!!

[marta]

I hope you feel better soon Lightwarrior. It took me about a month after the last infusion to feel any appreciable difference. But I was on the two infusion method so not sure how that compares.

Oh Light! What Bob said. I'm so sorry that you're going through this. I know you'll see the sunny side of the fence I just hope it happens like RIGHT NOW! My heart and strength and light are coming at you right this minute (as each person reads this it happens) and you will feel like a million bucks in no time.

Hugs.

On a side note: My doctor has gone to our provincial government to fight for the government to cover RTX for Vasculitis patients, and it just got approved last week. It will be formerly announced by the government and the pharmaceutical company but in Alberta if you have Vasculitis you don't have to pay for RTX. How cool is my doc? Pretty darn cool if I do say so myself.

[Dirty Don]

It seems that having Wegs or GPA is like living next to a volcano.

drz! You must be taking classes...LOL! Nice line as we all hope for 'Al's Dream'!

[Debbie C]

I too am so sorry you are still feeling so bad ..I also think that once you get off the mtx and lower the pred. you'll feel soooo much better. Just kick back and relax.