Are You A Former Immuran/Azathioprine User?

[TOBEY32]

But now take nothing to suppress your immune system? Was curious, as my doc recommended I never go off of it.

David

[andrew]

I was on Immuran the Cellcept and now nothing. My doc pronounced that I was in remission and could come off the Cellcept. That was about six months ago and all good. Not sure why your doc would recommend you never go off it - maybe he doesn't believe in remission :) How long have you been on it?

[Jules]

I've have been off Aza for 2 years now without any problems.

[TOBEY32]

I have been on Immuran since the Fall of 2011, give or take. I will have to ask him why he feels the need to keep me on it for the duration. One cannot come clean of meds one day if one is still on something. Think that's the reason I put it out there. Thanks guys...

[Randy]

I have been in remission for 6 years and still take azathioprine. My Doctor also recommends that I never go off it. I had a very aggressive, fast moving form of GPA, the doctors had a very difficult time getting it under control. My doctors theory is that if it does come back the azathioprine will slow it down enough that they can counteract it before it gets really serious. Since I never want to go through all that again I agreed with him and continue to take it.

[sbeach78]

I am on Imuran right now, but my doctor said if my blood results stay good I should be off of it by September.

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[cutehair2013]

I have been on Imuran since Nov 2011 at 150mg's was holding steady and doctors did say that I am in remission as well. I have not had any flares or anything crazy while I have been on it, up to this year. My inflammation has started to creep up higher and higher every month, now my doctor increased the amount I take to 250mgs. He believes that due to weight gain the medication amount is to low (I have not gained that much weight). He too believes that I will be taking Imuran for the rest of my life as well.

Not sure I am in the same belief my onset of Wegeners was slow and all focused in my lungs, I have hope that one day I will not need to take it.

[TOBEY32]

cutehair2013: That is such a high dosage! Have you any immune system at all? Is there a way of gaging that? Don't even know. Are you particularly cautious in social settings? Just curious?

David

[drz]

cutehair2013: That is such a high dosage! Have you any immune system at all? Is there a way of gaging that? Don't even know. Are you particularly cautious in social settings? Just curious?

David

I had that dosage once for a short time. My liver enzymes got too high so it was cut back. The WBC results will help assess if your immune system is suppressed to a dangerous level. That happens more often with CTX.

[cutehair2013]

Hi David

I am totally unsure if I have an immune system left! The doctor and I went back and forth about increasing my dose in the end I agreed to do it for a short time and see if it helps with the Inflammation. For taking additional cautions in social settings, I am more aware if people have colds, I do not shake hands, and I try not to get close to people I do not know. In my job I am always meeting people and they will often reach out to shake my hand leaving for an awkward moment, I just laugh it off and say I am a germ sensitive person.

When I got sick I was an Addictions Counsellor working mostly in half way houses and in jails, needless to say once I was cleared to return to work due to the suppressed immune system I was not allowed to return back to my position. I loved my work and found it interesting and ever changing. Just one more thing I lost and needed to work through with this stupid wegeners.

I still travel regularly actually when my doctor increased my meds to 250mgs I was leaving two days later for Mexico for my brothers wedding, I was not missing it! The doctor advised me to stay home and not risk the potential health risks that I could catch on a plane, or in Mexico. I told him I would go to Mexico and see if there is a Mexican doctor that could fix me all up!

Sorry for the long winded answer to the question....overall no I don't really do much different than prior to treatment in terms of social per cations. I continue to push the limits of my physical health while I can to enjoy the most I can while I can.

[TOBEY32]

Two things cutehair2013: 1) wear a mask on the plane. Don't think twice what people may think. I wore one the first winter season after being diagnosed to the store, errands, etc. And now when I SEE someone else with a mask I now understand - and I don't fear. 2) White (clear) iodine (Wal-mart, CVS). Use your index finger to dab some around the bottom of each nostril. It helps germs from entering through your nasal passages. It's a little potent at first, but the smell wears off quickly. I would do it once in the morning and often once mid-day.

David