Cytoxan

[JanW]

Believe me, after reading this boards I "know" but can't actually "feel" how lucky I am. We both think that I have active wegs however, but just asymptomatic, so I'm very glad that Yee considered whether the "cure" would be worse for me (lifestyle wise) than the disease. He really believes that in me the disease doesn't progress very quickly. I'll just have to gear myself up for the surgery -- possibly more than one.

For what it's worth, he doesn't treat with ctx unless he sees kidney involvement. That's his line in the sand. He called it a very serious drug, very toxic, poorly tolerated. On the other hand, he said that no one gets through rheumo residency without knowing mtx like the back of their hands. You would think that more rheumys would prescribe it then for Wegs, wouldn't you, since it is apparently what they are giving to many of their RA patients? Maybe there is a a fear of undertreating such a rare disease, though, and really feeling as though you would have nowhere else to turn if you weren't a specialist. I was even surprised going through thhe mtx thread just a little that some people here were started on a much higher dose than me.

[Sangye]

Hmmm. The part about not using ctx unless there's kidney involvement made me stop in my tracks. That isn't standard of care among Wegs specialists. When my lungs started hemorrhaging again last summer, my Wegs doc said neither imuran, mtx nor Cellcept are effective in stopping alveolar hemorrhage once it's begun. I have no kidney involvement. He said the only treatment for alveolar hemorrhage is ctx or rtx along with pred.

Mtx is used to maintain remission for large numbers of Weggies, but is generally not strong enough to induce remission, especially without pred. RA is a very different pathological process and is not life-threatening. It also doesn't do silent damage. I don't mean to downplay RA at all-- it's a horrific disease. It's just comparing apples and oranges.

[Jack]

He really believes that in me the disease doesn't progress very quickly.

Be careful, this is a nasty, sneaky disease! After 18 months of misdiagnosed trouble my symptoms had settled down and I was working and not feeling bad. I went from that to being at death's door in the space of two weeks.

[JanW]

I guess we will have to see, won't we? I am getting a chest CT tomorrow, bone density scan next week, and am going to see this doctor twice a month for the foreseeable future where I will have labs run, a physical exam, and a check for any new symptoms. Considering that I have likely had the stenosis dating back to 2005, and the saddle nose for at least six months without other symptoms, he is obviously making an educated guess that my progression is slow, but it's only that, obviously, a guess. I suppose that if I was feeling quite unwell I would want to quell the inflammation quite quickly, but I don't see the need for that, particularly since remission or not I have the surgery. He feels that the inflammation is not so severe that it needs to be quelled in order for the immunosupressive to actually be effective.

I aprpeciate that all of you have been dealing with this much longer than I have, and I also appreciate that one needs to get this disease under control quickly, but I do trust this doctor and his team which has treated more than 100 WG patients, which we all know is a lot for such a rare disease. He did explain to me, several times, that this disease could attack any organ at any time, which is why I would be constantly monitored.

Sangye - I wasn't trying to say that RA and WG are similar, obviously, only that mtx's properties are well known because it's so widely prescribed.

[elephant]

JanW my sister is on methotrexate for her RA , I think the dosage is 20 or 25 mg a week. She also taking another immunosupressant drug. Her's is severe. My Rheumy would not give it to me, but I am a different breed. Had this over 30 years.... long story.
I am glad you are being monitored closely. It is so sneaky it got me bad last year, Rheumy thought I was ok and it turned on me less than two weeks.

[JanW]

Thanks. This doc basically said that the further we will ever go between appointments is six weeks, and it's every two weeks for months, so I'm comfortable with that. Luckily I don't have to travel far (less than 30 minutes with NYC traffic) or wait for hours like I have read that some of you do.

[Sangye]

Jan, I know you weren't comparing Wegs and RA. I was only addressing your question about why mtx wasn't used as much for active Wegs as it is for RA.

Even under the excellent care of a Wegs doc, my current flare took months to be diagnosed. We're just being super-protective of you!

[JanW]

Understood, Sangye! According to the VF website, cytoxan is used for kidney involvement AND "severe" cases of WG, so I'm assuming that yours falls into that category. My doc just probably used kidney involvement as shorthand for talking about how he treats. It's the lack of the use of pred that appears more unconventional and my husband and I definitely questioned him about that.

[Sangye]

I'm not terribly surprised by the lack of pred. My Wegs doc didn't put me on high dose pred with this last flare. Even though my lungs were hemorrhaging and I was in bad shape, I wasn't in critical shape like back in 2006. He felt I had just enough time for the ctx to take effect. He wanted me on 20mg pred for the first month of ctx, because it takes a month to start working. I didn't even take that much and he was okay with it.

[elephant]

So why do so many start at 60mg?