Medication...How long?

[Dryhill]

In most cases, CellCept is the alternative to Imuran, which is not well tolerated by everyone. Pred is both a triage med, in high doses, and a maintenance drug, at lower doses. We all have a yearning to be off it altogether, but it is just a dream for most of us.

It concerns me, Brendan, that you are seeing the doctor so infrequently. Usually, WG sufferers have monthly, or at worst, bi-monthly monitoring. This disease can go from inactive to full-blown flare very quickly.

Al

I only see my doctor every three months, but I have bi-weekly blood tests which are sent to him and I also have his secretary's telephone number and I have been instructed to use it if there is any slight change to my condition.

Jim

[Widthofacircle]

Jeez Jim. I an worried now. I do not have thyis kind of attention at all

[mishb]

I used to see my specialist every month with blood tests every 3 weeks.

Now my ENT is every 6 months (wont be seeing him until June next year) and my Rhuemy will be every 3 months but still need to have blood tests once a month. Only just saw them both this month.
.......and believe me, they certainly call me in if there is anything strange or out of the ordinary with the blood results.

I would have thought, Brendan, that you, would at least, needed to have blood tests every month, if not for anything else but to test the liver and the kidneys to make sure the meds weren't causing any unwanted reactions/affects. Maybe you should ask your doc next time you see him/her.

[rif]

My son sees specialist every eight weeks with blood tests every six weeks. He has also been on Mycophenalate since dx in April 2009. Pred daily dosage is down to 5mg.

[Sangye]

I agree with Bob, that was my understanding of maintenance drugs too, you have to be off Pred before you can come off them.

I also thought I read somewhere that Cellecept wasn't used very much anymore, because alternitives like MTX or Imuran are more effective, correct me if I'm wrong...

Okay, well neither of those is correct. LOL

Many people need to remain on low-dose pred to keep symptoms at bay-- 10mg or below-- but they don't need to stay on an immunosuppressant.

I asked Dr Seo about Cellcept a few months ago. It's still widely used and is as effective as mtx or imuran.

[Sangye]

It concerns me, Brendan, that you are seeing the doctor so infrequently. Usually, WG sufferers have monthly, or at worst, bi-monthly monitoring. This disease can go from inactive to full-blown flare very quickly.

Al

While it's important to get regular labs (monthly), it's fine to go 3-6 months between appointments if things are stable. I have monthly labs and see Dr Seo every 4 months. I can go in sooner if I need to, but for the most part things remain stable or they can be addressed via email.

If you have new symptoms or troubling ones, it's important to be seen quickly.

[Sangye]

If you're on ctx you need to get labs every 2 weeks to make sure WBCs are going too low (could be a sign of bone marrow failure). If you're on mtx or imuran you need to get labs every 2-4 weeks to keep an eye on liver function. Cellcept doesn't affect the liver like mtx or imuran so there's no reason to get labs more frequently than monthly.

Widthofacircle, given that your case of Wegs is stable and which meds you're on, I don't think being seen every 4-6 months is cause for concern, as long as you can get in sooner if you need to.

[Psyborg]

Okay, well neither of those is correct. LOL

Many people need to remain on low-dose pred to keep symptoms at bay-- 10mg or below-- but they don't need to stay on an immunosuppressant.

I asked Dr Seo about Cellcept a few months ago. It's still widely used and is as effective as mtx or imuran.

I may be incorrect in how I stated that. Dr Villa-Forte doesn't want to discuss going off of Immuran until I'm off of Prednisone. That might not be the same everywhere though I'm guessing that assumes I don't hit a wall at some point where I can't go any lower.

[Al]

If you're on ctx you need to get labs every 2 weeks to make sure WBCs are going too low (could be a sign of bone marrow failure). If you're on mtx or imuran you need to get labs every 2-4 weeks to keep an eye on liver function. Cellcept doesn't affect the liver like mtx or imuran so there's no reason to get labs more frequently than monthly.

Widthofacircle, given that your case of Wegs is stable and which meds you're on, I don't think being seen every 4-6 months is cause for concern, as long as you can get in sooner if you need to.

The term I used with Brendan is "monitoring". I do believe that any potentially active case of WG (and that is almost every case) needs regular monitoring (blood tests and, where appropriate, urine tests), regardless of whether one sees the doctor so often or not. As Sangye points out, this is especially important when you are taking immunosuppressive drugs, which can mess up important things, like blood marrow, liver function, adrenal production, and other stuff.

Al

[delorisdoe]

sounds to me like everyone is in agreement here