New Member Introduction

[drz]

The only reason to start at a sub-therapeutic dosage is to help your body adjust to the medicine. Often this can make the difference between being able to tolerate a new medicine and rejecting it because of the side effects. I started azathioprine at a very low dosage but this was explained to me so I understood the treatment plan. If you are having considerable trouble with the very low dosage, that might not be the best med for you. It is important you have a lot of trust in your treating physicians so if they lack adequate communication skills to inspire your confidence you should seek help elsewhere. You are also close enough to SF to find some experts there too if needed. You can often get treatment closer to home if the area doctor consults with a recognized expert with lot of experience. It often is a good idea to see the expert directly for a consultation too to help set up the consultation setup.

[annekat]

I agree with drz that MTX might not be the best med for you, not only because such a low dose is making you sick, but because it is not a heavy hitter for lung and kidney involvement. Most who are started initially on MTX only have sinus involvement. A specialist would be more likely to start you on one of the stronger drugs that Pete mentioned above, CTX or RTX. Once you had made quite a bit of progress and were heading toward remission, you could be switched to a milder drug. Some people just can't tolerate certain meds, so it is good there are alternatives, but most will feel some side effects at least for awhile. And each med has its own set of risks to keep in mind. A specialist could explain all of these things to you. If you can get in to UCSF, it is probably the best alternative for you. In the meantime, though, it would be nice to find a doc who would get you started on the right meds, in case there was a wait for an appointment at UCSF. Sacramento is a big enough place that there should be some competent rheumatologists or nephrologists who have some knowledge and experience with WG. Rheumatologists are the first choice for a WG doc, but it has to be one who knows the disease, and not all of them do. Then, most of us have ENTs, pulmonologists, nephrologists, and others as needed, as part of the treatment network. Good luck.

[annekat]

Actually, any doctor can prescribe you the right meds to get you started, if you have to wait to see a specialist. They just have to know what they are, and it isn't that hard to find out. My suggestion would be 100-150mg of CTX per day, or more, depending on your weight. The formula is 2mg. per kg. of body weight per day (1 lb = .45kg). And prednisone, 60mg. per day, or if you are in really bad shape, 80mg. You would start tapering the prednisone at some point, possibly within a few weeks. And you could take the antibiotic Bactrim DS 3x/wk to prevent certain lung infections that immunosuppressed people are subject to. I'm not a doctor! But I'm going by my own dosages and the typical ones I've read about here on the forum. It's just important that you get some effective meds into you, soon! The alternative could be that you end up in the hospital, and if it's the UC teaching hospital in Sacramento, you will probably do OK for starters. (I used to live down there.)