AIH, Cell cept vs imuran

Welcome back Pam

We should get some good chatter on this topic as more aIHers are active just now.

I am caregiver/partner of a transplant recipient a year post TP

Mike also takes cellcept ( with prograf ) and I will be watching for information shared about that med.

Liver disease is a tough one. I hope you settle into a regime that works well for you to be flare free and liver spared for a long long time.

Best
Carol

I took cellcept, but not with prednisone. Mine was taken with prograf, but only prograf had mild side effects. Once my dose of prograf was reduced, no side effects at all. Cellcept never was a problem in the 3-4 months I took it. It's the same old story with most drugs, you can go without and suffer the consequences, or take the meds and suffer the side effects. Aside from taking cellcept on am empty stomach, you need to drink a large glass of water when taking it. Everyone reacts in different ways, when it comes to how meds affect them. Good luck.

It can take some time to find the right balance of meds for a specific individual for AIH. Tough I know but you will get there.

I have been taking CellCept (mycophenolate mofetil) for nearly 10 years now for AIH - and was able to wean off the prednisolone very quickly once I started it. I get a few side effects but have learned to control them pretty easily - but I always take it with a full meal. The instructions on taking cellcept have reached a bit of a weird situation. When it first came out in the late 1990s the advice was to take it on an empty stomach but then further work as done and after a few years that instruction was changed - but for some reason whilst the leaflets with the meds have changed in Europe, Australia etc the leaflet in the US has never changed. Don't know why. At the hospital I attend which uses cellcept a lot (it is a busy heart, lung, liver and kidney transplant centre) the specialist pharmacist always goes out of her way to stress to me the importance of taking it WITH food to reduce side effects. I know that my gastric side effects are awful if I take it on an empty stomach and I have always taken it with food.

On a different forum I go on where quite a few people take cellcept for AIH I notice that some in the US have been told by their doctors straight away to ignore the leaflet and take it with food. Others have been given the OK when they asked. No doctor has said 'no'. I would always recommend checking with your hep or pharmacist of course but that course of action may be one you want to consider.

I have done a lot of reading around CellCept and the papers I read said the cancer risk was the same as, if not lower than azathioprine. All immunosuppressants carry a slightly increased risk of cancer purely because of the way they work so I think thats just something we need to live with whilst keeping in mind it is only a slightly increased risk.

Even if CellCept isn't for you do remember the docs have other options for AIH. They include a different form of mycophenolate called mycophenolate sodium; tacrolimus (Prograf); cyclosporin; mercaptopurine (also called 6MP) plus a few others such as penicillamine, cyclophosphamide. But my first suggestion would be to follow up the idea of taking CellCept with food.

(By the way I am in the UK where the brand name of meds if often different (although CellCept is the same - although a generic version is now available as it is out of patent) so I have mainly used the generic names so you may need to google to find the brand names!)

Ann

I was only on CellCept for about 5 months when first diagnosed. It has a faster onset of action and I was quite ill so I started with pred and added CellCept a week later. I was told to take it with food (I'm in the States). From what I could tell, I didn't have any side effects...just all the usual pred side effects. The only reason I was switched to azathioprine was that my hep said straight off that I would never come off all meds as the risk of a flare off meds would be too great for me. Since my initial presentation was so severe, he didn't want to risk it. Aza has been around much longer, is cheaper and is usually the first immunosuppressant to try so I switched. I haven't had trouble with it. I had asked him about long term risks on it and as Ann said, they all have them...but they are just that, a risk...not a guarantee.
The chance of dying from AIH off meds is higher than the risk of severe side effects from the immunosuppressants.
Ann gave you some good advice to start with so I'd start there too. CellCept would be the drug I'd ask for first if I start having issues with the aza.