Is there a person...

[Sangye]

BTW I am supposed to take 150mg, but I self dropped to 100mg.

Raj, please don't do that with your drugs! The doses are standard to achieve results. If you take too low a dose, you might just be prolonging the time you spend on it and/or pred. Also, it can't control the disease as well and you can develop silent damage while you think you're getting better.

Most importantly, you have to let your doctor know exactly what you're doing. S/he is basing decisions on what s/he thinks you're taking. So if your blood work doesn't look as good as they expected on 150mg imuran, they may think it doesn't work for you. Or any number of other scenarios.

There have been times that Dr Seo wanted me on a slightly higher dose of pred and I told him I'd start low and work my way up. He's fine with that and makes sure I understand if there are risks. I'm always 100% up front with him about what I'm taking.

[Jack]

I agree with Sangye.
If I do not agree with the proposed medication, I discuss it with my docs and we come to an agreement. If I change my dose between visits for any reason then I let them know what I have done.
Ctx is far too dangerous a drug to be changing dose without consultation and follow up testing.

[JanW]

I agree with Jack and Sangye. WG is nothing to mess with and neither are these drugs! You really have to let you doc know what you are doing at every step of the way. For instance, in my case, when my liver enzymes started to spike on a very low dose of mtx, if I hadn't talked to my doctor about what he meant my moderate drinking and what I meant by moderate drinking (two very different things), he would have thought I couldn't tolerate mtx and put me on another drug. As it stands I radically cut back on drinking (I was a daily wine drinker) and the problem resolved completely.

[DEE]

[QUOTE=JanW;20763]I agree with Jack and Sangye. WG is nothing to mess with and neither are these drugs!
ive been using oral Ctx for nine months due to the fact its the only thing that is keeping me stable at the moment, but im starting to tapper from 150mg daily to125mg daily over the next month when they hopefully will add Imuran and continue to tapper Ctx with weekly bloods and consults with wg consultant
they expect the cxt tapper to be a slow process
i know we are all different but they kept repeating how important it is to tapper slowly after been on cxt for so long
im tappering preds at the same time 22.5 mg down to 20mg this week started to get more joint pain and headaches back but will keep an eye on these things . i know im desperate to get off some of these drugs but i wont do anything silly like ignore symptoms done that before and got in a mess
see i do listen to you all DEEx

[Doug]

Even if you have MD after your name, you should follow your doctor's orders, and, certainly, discuss any thoughts you have on how you are responding to a medication.

I had one spell where I felt "drugged". When I mentioned it to my doctor, he reduced dosage on the drug concerned, experimentally, and asked me to track how I felt in consequence. Ultimately, my dosage was dropped on the drug after my doctor was able to verify it was at an efficacious level still, and I didn't have the "drugged" feeling.

It was one where dosage was based on weight, and my weight was in that state where it fluctuated wildly because of GI issues. I'd dropped into a new weight range for the drug, but just barely, yet it was sufficient to leave me over-drugged on the old dosage.

[elephant]

I am honest with my doctors and they respect me if I don't want to take a prescribed medicine ( not for wegs) because of the side effects, but I do take all the Weg medicines and I am very compliant.

[pberggren1]

My new Wegs doc told me that most docs don't give a high enough dose of ctx to knock the Wegs out early.