Update on Chris

[Chris G]

Saw my rheumies on Tuesday. They agree that mtx is not controlling my wegs. We have recently increased the mtx to 30 mg injectible, and will continue with that. But we will now add Imuran to the coctail.

They did say that they'd be willing to skip ahead to Rituxan. But my wegs is not life threatening, and to be honest, rtx scares me a bit. In the end, they let me decide how aggressively I want to attack. There's still the hope that the increased mtx will help soon. If the mtx/Imuran coctail doesn't show any promise in the next 8 weeks, I'll swallow my fear, and ask for rtx.

Question: My biggest complaint right now, is that the pressure in my head (sinuses, ears, not sure where it's coming from), causes me to be lightheaded all the time, and sometimes dizzy. I have trouble concentrating, and sometimes feel "drunk", for lack of a better word. Ok, I guess that was a statement......the question is.........Is this a common wegs complaint???

Any thoughts about my new treatment plan?

[delorisdoe]

I have had the exact same thing for 3 weeks now. I have never had wg-related sinus problems so i dont know. I appreciate you asking this as I have delayed doing. I am starting to seem crazy I think. lol.
seriously thoough , it is not really painful but it is like a dull constant pain in my head, sinuses and ears. I keep waiting to need to blow my nose or have a full on head cold but nothing is trying to get out so i have wondered.

[Chris G]

Yep, sinuses, ears - basically my whole head feels like a big balloon. When you blow & there's nothing there trying to come out - it's not a cold.

I do currently have a cold on top of this nonsense though. For the first 12 hours or so, I wasn't sure.........then came the sneezing and runny nose (and sore throat)...... I knew it was a cold. My rule of thumb from now on.....if it's stuffy, but NOT running.....it's wegs.

[pberggren1]

Chris G, I am concerned that the mtx/aza combo will not be strong enough to knock the Wegs out for a lasting remission. I am not sure what all your symptoms are and what your blood work looks like but maybe ctx is an option.

[Sangye]

I didn't know they put people on both mtx and imuran at the same time. That seems awfully hard on the liver.

I do understand your concerns about using rtx, though. If it were me I think I'd also want to try the less powerful options first. Not only are rtx and ctx harder on your body, but it's best to reserve them for more severe disease when possible.

[pberggren1]

Very true Sangye. Ctx especially should be reserved for severe activity!

[Chris G]

I didn't know they put people on both mtx and imuran at the same time. That seems awfully hard on the liver.

Phil, I think by most standards (and certainly when compared to many of those on this site), my disease is relatively mild. No consolation to me, of course - I still feel like crap most of the time. But there's no lung, or kidney involvement, no tracheal stenosis. Mostly sinuses & ears, light headed/dizziness, & what I call "cognitive" problems from the pressure in my head, and occasional shortness of breath. They would not consider ctx for me at this time. Rtx would be the next step up.

Has anyone else ever been on mtx and imuran together?????

[DEE]

Ive been on mtx ,cxt , tried cellcept had a reaction and now on Imuran but have always come of one for before starting another,never taken two at the same time DEEx
,

[Chris G]

Rheumy just called me back about a bloody nose I had yesterday. She's emailing my ENT for me. Anyhow, I asked her why they chose to add Imuran rather than Cellcept, or something else. She said that a recent 2011 study showed good results with vasculitis diseases, from mtx/imuran combo. So I feel it's worth a try, considering I'm not quite ready to step up to rtx.

[NicoleB]

i've known people on RItuxan for cancer. its actually pretty well tolerated, as in nearly NO side effects. honeslty, i would rather be on that (side effect wise, and effectiveness) than any of the others, but my issues are mild so i'm sure they'd never suggest it.

anyway, i think the biggest risk, is infection from killing off of B cells. but risk of dying from this is rare, and its a risk you take with all immuno drugs. you might find that its a good choice if insurance will pay for it.

[Sangye]

NicoleB, I have terrible side effects for 6 weeks after rtx. It's not a piece of cake for some of us. Most people do tolerate it well, though.

[NicoleB]

are you having infections, or is your body just not liking the rituxan? i hear rituxan is derived from mice, and that sometimes the human body has issue with that "interspecies" mix for lack of better word :)

[Sangye]

No, I haven't had trouble with infections. Each rtx infusion makes me incredibly weak--to the point where I can walk in for the infusion but can't walk out. The weakness continues until the next infusion, and gets worse with each one. When I did the 4-infusion protocol I was barely functioning by the end. My level of functioning is pretty poor on a regular day, so that was awful. I fared better with the 2-infusion protocol but I'm having some doubts that it worked as well.

Dr Seo said very few people have this type of reaction and there's nothing they can do about it. He believes it has something to do with the way it's manufactured.

[jola57]

I have been on cyclo and mtx at the same time but have not heard of imuran and mtx, but can't see why not.