AIH/PSC Overlap Syndrome

[witchiegirl]

Does anyone else have experience of this? it seems quite hard to find information as this combination is very rare. I've plodded through several learned articles in recent weeks, none of which are hugely optimistic.

The plan at present for me is a further biopsy in a few weeks, then to start immunosuppressants.When all this began for me - over a decade ago, it looked like I had small duct PSC (this has a better prognosis than large duct PSC). Then the sentence was commuted to AIH. Now they think I have both! Over the decade I've been tired and achey but LFTs stabilised, and went to normal briefly, but now it seems treatment is necessary. I have other AI conditions - hypothyroid, dry eyes, probably mild IBD.

I am VERY worried about weight gain on steroids - I am overweight, had been doing well losing weight (the old trick of eating less and moving more ....), but have BMI around 30 and a bit stuck again - lots of joint pain and fatigue and motivation has gone down (winter in northern britain, health uncertainty, etc). I hope I might have a combination of steroid and azathioprine, due to age and fatness (I am early 50s and female so higher risk of osteoporosis) - we'll see. Any knowledge/experiences welcome.

[witchiegirl]

So nobody has nuffink to say?! if you can't comment on the overlap syndrome or the PSC angle, as i accept these are rarer, can you maybe tell me something about AIH as it is much more common? I see a few of you have experience of AIH. Has anyone NOT gained weight on steroids, esp if they already had problem with weight. Please ......

I am having liver biopsy this week. Any useful hints on 'surviving' that? I did have one over a decade ago but can't remember much about it.

[May84]

Hi, I don't go on this website very often so have only just seen your post. I have PSC and AIH. i hope the biopsy went well. I belong to an online group for the psc who are also on Facebook. I'm afraid I gained weight on the steriods I've been on and off them for 2 years or so which is how long I've been diagnosed for.

[jenniwren]

I have had AIH for 13 years and there was a point a few years ago when the docs thought I may have PSC overlap but changed their minds. I was put on steroids upon diagnosis and have taken them ever since alongside various immune-suppressants. I am now on a dose of 15mg pred and although I have a considerable appetite, I try to manage this by eating a balanced diet so as not to put on weight. I also try (mainly unsuccessfully) to eat minimal sugar and white carbs and stick with slow releasing energy foods. Maybe speak to your consultant about diet or suggest a referral to a nutritionist who might be able to help out with meal suggestions or plans to help out. I hope the biopsy went well and didn't cause too much stress and hope that you are getting on ok

all the best

[witchiegirl]

Thanks for replies. My initial biopsy 13 years ago seemed to show PSC, then i moved and new consultant thought AIH. Now I have 3rd cons (though haven't moved again!) and he thinks overlap as apparently I have all the relevant antibodies in my blood. But more will be shown with biopsy which is tomorrow. I've now had my 'last supper' (!!) and all I have to do is load my MP3 and i'll be fine ....

I've been lucky in that i didn't need treatment (except for caution with booze and meds) though now it looks like treatment will be required - i'm kind of relieved despite side effects of meds as I don't feel that great. Very tired, nauseous and a kind of 'full feeling'. I've decided I'll cope by exercising more (I've been a bit slower last few months due to fatigue and rubbish weather) - my appetite is a bit weird but i'll need to be very careful. Also being a middle aged woman isn't great for weight gain round the middle, so lots going on.

Thanks again, and all the best to you too

[daisy11]

Having looked at your blog about your condition, yes I have this and quite truthfully at first thought that everything was okay just plodded along until had splenectomy and that is when things started to worsen. I have only just been put on Aza after going on Myclophenolate which I did not get on with. However over the last year and have ultrasounds every 6 months was told the pain I am getting is a nodule from liver which is touching gallstone. Last week was the worst, my tummy looked huge was going to phone consultant but could not bear to go into the hospital as I cannot stand it so just sat it out and it has gone down and notice that when I eat I get the stitch like pain. I am having a mri to confirm, all thoughts going in my head. I think this site is brilliant.