What happens once in remission?

[FrancisK7]

I am allergic/do not tolerate 5-ASA. Tried both Salofalk and Mezavant. On my last visit, I had asked about the treatment options, and he said the next step if 5-ASA failed was immunosuppression. He tested me for TMPT, TB and
Hepatitis immediately in case the Mezavant would fail too, which it did.

It was my understanding that immunotherapy didn't last forever, and that once a patient entered remission, they were given a maintenance dose of 5-ASA to keep them there.

What happens with those who cannot take 5-ASA? I'm 26, am I expected to remain immunocompromised for the rest of my life? On my last visit I said I'd much prefer getting anti TNF instead, but he said the government wouldn't pay for it unless we proved immunosuppression didn't work.

Today, I spoke to him on the phone, he said he'd prefer to put me on anti-TNF because of my age. I was a little confuzzled.

Are there patients out there who live their lives with a lowered white count permanently?

 

[nogutsnoglory]

There may be new medications and therapies coming out in a few years so nothing is necessarily for life. The biologics also suppress the immune system and you are at a higher risk for infections etc. I personally would prefer to be on an immunosuppressor over a biologic because I think the long term consequences are fewer but I have no choice.

 

[FrancisK7]

After reading this paper: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

The studies I read suggested infliximab lowered the white count less than azathioprine?

I'll definitely do more reading on this.

 

[Jim (POPS)]

I was DX 1 1/2 years ago and am 62 years old. I am taking Imuran (6mp) and I don't like the fact that I have to. But the GI said at my age there is less of a chance of longterm side effects.

 

[Sascot]

Not sure what happens next. For some reason our GI puts kids on Aza/6mp for about 2 years, then if no symptoms, he would take off all drugs!? All GI's seem so different.

 

[kh216]

I am doing well on 6mp but I do have a lower white blood count because of it. My doctor is monitoring it through regular blood work. I personally hope I can stay on 6mp.

 

[rollinstone]

I'd go with Aza and see how it goes, iv Just gone up to 100mg and am starting to feel pretty good, as long as you monitor your bloods you should be sweet, Aza is more of a immunomodulator although it does suppress the immune system it's doesn't suppress the whole system just the mechanism that causes intestinal inflamation.

 

[CeeCeeGo]

Joshuaaa
Glad to hear you've gone up to 100mg. Glad to hear you are still feeling good & I hope it continues to work for you.

 

[rollinstone]

Thanks carol I had a tough day yesterday due to a bit of a hang over and little sleep but feelin good today

 

[hawkeye]

I'd go with the Imuran first. I've been on that and 5-ASA as a combo since 1991.

 

[teeny5]

When I went into remission I was on a 5-ASA always as a maintenance drug. My GI said I would have to be on something for the rest of my life. There are many types of these drugs though. Some I did well on and others I did not. I know you tried two of them that did not do well, but there might still be one that is ok for you. I have taken Pentasa, Asacol, Rowasa, Azulfidine and Colazol. I did the best on the last two.