How long have you been on 6-MP/Imuran?

Ibdisthepits,

I feel for your story. My children are 3 and 1 and everytime they have an unusual bowel movement I jump and think they may have UC. I am sorry that you have to go through this with your daughter. I can't imagine being a young child and dealing with the side effects and irritability of Prednisone. It is so wonderful to hear that you have found a treatment plan that works for her!

My GI is conducting an enzyme test (I forgot the name of it) to make sure that my body can tolerate the 6mp so it will not be 'toxic'. Could this be the determining factor on whether to take Imuran or 6mp.

ManhattanMama

Are you going to go on 6mp/Imuran? Have you decided. I took that same test and they said I could take 6mp. Whatever the enzyme test was showed I could handle it. How are your current sxs? What are you eating? Just curious and hope you are doing well physically and mentally too ;) I'm hanging on by a thread these days,

I am also the same with my kids. They are 9 and 6 and I panic when something isn't right with their bms. The other day my 9 year old came to me and said he was having loose stool and my stomach turned. He is ok now, but ugg I can't even imagine. It's the only thing worse than me having this.

I tried Imuran a couple times for about a year or a year and a half. Both times I felt more tired and run down even though my bloodwork was not out of bounds. I got more cysts than usual- it seemed I would get cysts on my back Or hips around once a year when on Imuran, and I dont normally get cysts at all. additionally, both times that I was on Imuran and coinicdentally, once when I was on humira later, I got nasty bursitis in an elbow (on separate elbows, not always the same elbow) for no apparent reason- after say just getting up out if bed and leaning on my elbow, which of course had to be medically treated. As far as colds and sore throats went, I seemed to get them a bit more on those drugs (ditto Humira) but what really struck me was how long it took to throw one off- many weeks- vs nowadays off those drugs I seem to be able to get rid of a cold in a few days again.

I was on 6mp for 3 years and it really didn't do much for my UC. I'm with you Christine. I don't know why I spent so much precious time on all the drugs because it wasn't like they were working. At least we know we tried all we could. Hindsight is always 20/20.

bananagirl said...
i decided to stop taking it because i didn't like how it was affecting other parts of my body.

Can you explain how it affected "other parts of my body"???

My doc has been telling me that 6mp has less side effects than prednisone but I don't want to switch one horrible drug for another one!

With 6mp it can take 2-3 months before you see any benefit and you will need to continue to take prednisone during that time. You will also need to have blood work done weekly and then monthly or every 2 months once you are settled to make sure you do not have any toxicity in your liver. There is also greater risk of some cancers with 6mp. There are risks with everything so each person needs to make a personal choice and then stick with it.

Thatfield, that's interesting. My GI says they're not sure if Imuran can induce remission but only that it can maintain it. I guess your case shows it is possible to induce it as well. It seems to have worked very quickly for you. That's great!

I have been on Imuran since 2001 at 150 mg. daily. My UC has been in remission for about the past 5 years. I also have a liver disease (PSC).

I don't think I will quit taking Imuran--this October I was diagnosed with P.G. and am using it to treat that also.

I don't mind being on it for years at a time as long as things stay at bay with everything while I am on it. I have been battling P.G since October and still have a while to go with it so I don't see anything changing soon with my Imuran; except possibly increasing it.

Killcolitis - i am not 100% sure if the Imuran alone induce remission or if it was the combo of Apriso, Rowasa and Imuran however, I had been on Lialda the Apriso and the full spectrum of rectal meds (plus the ocassional course of pred) off and on for over 4 years without achieving full remission. Once Imuran was added to the mix everything changed. Now I take Imuran and nothing else.

Seasons 21 - When I started Imuran I was also told I would probably stay on it forever or until it did not work...however at my last appointment in March my GI said the latest studies indicate that if one remains in remission (flare free) for at least 2 years on Imuran the chances of them staying in a long remission without the drug are fairly high...so we decided to give it a try and see how it goes once I hit the 2 year flare free mark. I did have a small flare several months after I started Imuran so we are measuring two years from that point on...after I stopped taking the oral ASA's I began to wonder if they were actually causing my symptoms to be worse, I don't know if I can take them again so we will see how that goes once I stop Imuran.

Beat UC - great points!

Christine1946 said...
If only I knew then what I know now, I would have gotten the surgery ten years ago.

ByeByeUC said...
I was on 6mp for 3 years and it really didn't do much for my UC. I'm with you Christine. I don't know why I spent so much precious time on all the drugs because it wasn't like they were working. At least we know we tried all we could. Hindsight is always 20/20.

So you'd both recommend surgery? What type exactly? From what I've read there are a few different options. I am debating taking 6mp but want to try 1-2 other things first (rowasa enema and maybe LDN....asacol no longer does it for me and the hydrocortisone enemas only helped maybe 25%). I only have proctitis (1st 12cm) but I wish I could just get that part removed without issues. But I hear there are some potential drawbacks to it.

Post Edited (David1991) : 4/18/2012 8:21:30 PM (GMT-6)