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AIH - Imuran or Cellcept

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Posted 2/7/2015 3:55 AM (GMT 0)
Hi there,

I am new to this forum but not to AIH. I got sick about 12 years ago and after 3 years of testing finally got a diagnosis. I come on and off of steroids and have been off of them this go around for over a year. I've been on Imuran for 8 years. about 6 months ago, my liver labs started escalating so we increased my Imuran to 150mg. Within a few days, I started having headaches, fatigue, confusion, fever but didn't realize it was the Imuran until last month. My WBC was .8 so I came off of Imuran for two weeks to see if it would increase my WBC. After a few days off Imuran I felt better than I have in years. Labs now show WBC at 1.8 (which is good for me) but my RBC is low and my IgG is high which never happens.

I've been given the option to try Cellcept. I'm a bit nervous because like most of the drugs for AIH, the side-effects are almost as bad as the illness it is helping. I'm looking for feedback on your experience with Cellcept. I always have the option of Imuran at a lower dose if the CellCept gives me issues. I'm just nervous to try something unknown.

Thank you in advance for your feedback.
Erin

AIH and Sjorgen's: diagnosed 2005
Posted 2/7/2015 9:25 AM (GMT 0)
Hi Erin

I have been taking CellCept for 12 years now and find it great. The one side effect I did get was slight diarrhoea - easily controlled with Imodium. But even that has eased now and I rarely need the Imodium. I know one person who had to stop it due to extreme nausea but tother than that everyone else I know on it (via an online AIH forum) gets on well with it.

Initially it was very expensive but now it is available as a generic (here in UK at least) it is much cheaper.

The one big downside is that it is absolutely contraindicated in pregnancy as they have sadly seen birth defects when women inadvertently got pregnant whilst taking it.

I know the list of potential side effects looks amazing! Do remember that how they got that list was to prescribe it to people receiving transplants of all kinds then faithfully record every single symptom they reported. They would have been on a range of medications at the time and it isn't possible to say which were due to the CellCept, to something else or the combination of meds they were on. But to be on the safe side they put it down as a potential side effect.

One thing the pharmacist advised me when I started it was to absolutely make sure I take it with food so as to reduce the chances of gastric side effects. Unless things have changed recently the patient information leaflet with the meds in the USA still says to take it on an empty stomach whereas in Europe that was changed a long time ago. So do bear that in mind and ask your doc if it is OK to take with food. Personally I think that is the single best way to reduce side effects.

Hope that helps. Do ask away with any other questions.

Ann
Posted 2/7/2015 3:07 PM (GMT 0)
Thank you so much Ann. You mentioned an online AIH forum. Where could I find that forum? While it sucks to have AIH, it's nice to not feel so alone like I did when I first got sick.

Have a wonderful day!
Erin
Posted 2/7/2015 3:39 PM (GMT 0)
Hi Erin,

When Iwas first diagnosed, they put me on CellCept as it has a faster onset of action. I was on high doses of pred at the time but the only side effects I noticed were pred related.

As Ann said, they have to list ALL potential side effects but lots are very rare.
Posted 2/7/2015 4:56 PM (GMT 0)
Hi Erin

If you click on my screen name 'AIHer' in blue (or pink) to the left of this you will find my email address. Send me an email and I will let you have details of the website, forum and Facebook group.

Ann
Posted 2/7/2015 8:34 PM (GMT 0)
Hey Erin

A med not so often used but an effectiv alternativ with not as much sideeffects is chloroquine.

It made my AIH go into remission after high preds and relapse while trying to get of it.
Worth trying if cellcept doesn't do it.

Let-it-pass
Posted 2/7/2015 8:38 PM (GMT 0)
Ann
I would love to get the details of the website forum fb as well if its ok?
One can feel a bit alone with this from time to time.

Let-it-pass
Posted 2/7/2015 10:51 PM (GMT 0)
enjoy...hope your day is good! Click on the little envelope below Ann's name on the side bar and her email will come up. Hope this helps. Big Hugs
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