I have coped well for 8 years but due to fatigue and gastric symptoms am off work, trying to get some control by changing my diet and taking out fats with some success. Due back at work in a couple of weeks and panicking a bit worrying if I will cope with the fatigue. Also need to lose some weight previous doses of steroids haven't helped but cant keep using that as an excuse! Anyone else in similar position/experiences love to hear from you.
Just joined and would like to talk to ... - British Liver Trust
Just joined and would like to talk to anyone with AIH overlap with PBC.
I have similar - it's AI Cholangiopathy, which is AIH/PBC overlap for people without AMA. I think so anyway!!
Sorry you are so tired. I have fatigue too. It's a huge problem for me. I'm not in paid work just now, living off husband's meagre pension etc. In theory as he has just retired I may be able to go back, but not to what I was doing originally and I am worried about the tiredness getting worse. (We have 2 at home sons with additional needs so one of us has to be here).
Re- diet, though I don't do fat-free just now, I did so after dx and felt very good and lost a lot of weight. I too am on steroids just now, and have gained weight - I too don't want it to be an excuse for ever more!!
Hi Witchiegirl good to hear from someone with similar symptoms as I sometimes think I'm going mad as fatigue sounds kind of an excuse to some people who haven't experienced it. Think I will push on with the fat free for now remove processed foods. Those darned steroids we certainly need them but at a price of weight gain etc! Sounds like you have additional challenges at home that could also zap your energy stores..
Hiya , I have overlap syndrome. I have also got ibs...you don't mention your gastric symptoms. I was on high doses of steroids. I found low carb and no processed food helped reduce the 'hunger' and since coming off steroids the harcombe diet helped me loose weight and fodmap diet kept ibs under control. My fatigue is manageable but by Fri I am shattered and usually need a jammie day at the weekend. Sorry you are so worried. If I can help with questions I will.
Hi Janey-babs good to hear from you. What is the harcombe diet I haven't heard of it before, and whats a jammie day?
Phew gastric symptoms not good as I seem to have a problem digesting fats and frequent trips to the loo especially in the morning. They have settled quite a lot with the low fat diet but still going 3 times a day! Welcome any advice to deal with this
If you can't process fats it maybe isn't the diet for you. It is about eating real food. And when trying to loose weight not mixing fats and carbs. Low fat diets are usually high in carbs.....they increase the hunger with steroids and also produce lots of insulin which is the fat making hormone...it is not fat that makes us fat it's carbs. You could read the book by zoe harcombe (oh steroids prob mean you also have Candida. Also covered in book). A jammie day is a pajama day....lots of naps and rest. It tends to set me up for the week. I used to feel I was wasting a day but it means I get more out of the rest of the week.