Questions for Dr Seo

[Sangye]

I see Dr Seo on Wednesday so if anyone has any questions you'd like me to ask, post them here.

Here are two questions I've already got on my list:
1) Info about low-dose naltrexin and use for Wegs

2) Why are some Weggies on rtx also kept on mtx, while others are only given rtx?

Please keep your questions general (ie, not specific to your case). I'll do my best to get them all in.

[elephant]

How long does someone stay on maintence dose ( average)?
What's harder on the body staying on Bactrim DS or prednisone for life to keep Weg in remission?

[pberggren1]

those are good questions.

I would have to say that the pred would be harder on the body long term.

[beeinformed]

Hi!

I am not sure if this would be considered a general question but what immunosuppressant (cytoxan, cellcept, imuran, rituxan,etc) drugs are used to prevent further neurosensory hearing loss in Wegener's? Thanks!

[Sangye]

Elephant, I bet it's pred hands-down. Even from a holistic perspective pred is far more problematic than Bactrim. (A holistic perspective takes into account the gross imbalances and more subtle ones, too)

At my last visit I told Dr Seo how someday I'd like to be able to stop lasix, the diuretic I take for my leg edema. He said "Of all the drugs you take, it's the least harmful." I said "No, it's harmful." He had to repeat at least twice (!!) "I know. But of all the drugs YOU take, it's the least harmful" before I got what he meant. LOL

[Sangye]

beeinformed, that's a good question. I'm not sure I can ask it though since I've never had Wegs-induced hearing loss. I can only squeeze in questions that could somehow apply to me. Dr Seo is great about answering tons of my questions at each visit.

[Sangye]

I should also say that I always ask about current research, use of new drugs, etc....

Along those lines I'm going to ask if Cellcept is falling out of use. I've been on it before and wonder if it would be considered again.

[drz]

I should also say that I always ask about current research, use of new drugs, etc....

Along those lines I'm going to ask if Cellcept is falling out of use. I've been on it before and wonder if it would be considered again.

Have you asked as to what residual symptoms are normal or typical even after a person attains drug induced remission? It seems that many of us still have some mild symptoms like nasal stuff or joint pain or fatigue even after we are 90 % improved and considered in remission.

I also wonder why many of us have trouble walking. I know mine is partly due to inner ear damage (balance issues), neuropathy (nerve damage to both sensory and motor nerves), and some muscle weakness from muscle wasting; but i wonder if that is true for every one else.

[Sangye]

I've asked about residual signs/ symptoms in the past-- quite a bit, actually since I have so many remaining problems. I don't think it's a one-size fits all answer. Even in my own case it's taken a long time to figure out what's causing several symptoms, and for some we still have no answers. For example, the ongoing and often overwhelming fatigue many of us experience can be due to Wegs, drugs or other damage. I was shocked and pretty depressed by how lousy I still felt once I got into remission!

I would say the same thing with trouble walking. It can have such a wide variety of causes.

[gurinbasra]

With regards to the Rtx, can you ask him that once in remission how would he decide on when to give it next to a patient. Does he wait until the patient starts to get sick again, perhaps bloodwork may show signs - what is he finding - is there a "common" indicator for the majority of his patients? The thing that troubles me is that we work so hard to come down to a low doseage of Pred, only then to wait until we get sick again and then with that we have to increase the Pred again!

The other question is like everyone else - Prednisone - does he know if anyone (research co) is out there trying to come up with a safer steroid drug or alternate?

Also, for a response to "beeinformed", to prevent further sensorineural hearing loss, you have to keep the WG in remission and as to which drug that is depends on which one is working for you to get you in remission. Unfortunately, I keep getting in my ears everytime I get a flare up, I'm one of those WG's that has it localized in certain areas in my head - cochlea's specifically! I don't think any of the immunosuppressants are ototoxic drugs - meaning they cause tinnitus in the ears, but there are drugs out there and anyone with hearing loss should be asking the pharmacist and/or prescribing dr. if it is.