Many people on the AIH forum have found the following useful:
1. Take an active interest in your condition and its management. Keep track of blood test results, consultants letters etc. Find out if the hospital or GP (or both) will do blood tests, prescribe medication and so on. Systems vary across the country and it is worth understanding how it fits together in your area and who does what.
2. Be prepared for initial weight gain when medication is started. Have healthy snacks to hand and watch what you eat.
3. Call in favours to help you out as you recover your strength. You can always repay people in kind later.
4. Take your medication with food (unless instructed otherwise) as this can reduce side effects.
5. Do not ‘soldier on’ with unbearable side effects from the medication. There are several choices of medication and it can take some time to find the right one(s) for you as an individual.
6. Always remember that most people with AIH live a normal life.
7. Work at building a relationship with your consultant and his/her team. If they can see you are taking responsibility they will go the extra mile to help you.
8. Don’t expect your GP to be an expert in AIH and able to answer detailed questions immediately. The vast majority will never have seen a case before. So remember they are learning about the condition as well and will often need to ask the consultant for specific advice.
9. Ask your consultant what you should do if you feel ill or suspect your readings are increasing between consultations. Having a plan in place really helps if the situation arises.
10. AIH is rare and Gastroenterologists may not deal with many cases. Sometimes they will need to ask specialist hepatologists for advice themselves and sometimes you may feel you would get better care being seen by a team who look after a lot of patients with AIH.
11. Remember no medication is risk free. The list of possible side effects of medication used in AIH is long and therefore a bit overwhelming. Remember most people have very few side effects or even none. Discuss the risks and benefits with your consultant. The more you have been involved in agreeing on the treatment protocol the easier it is to stick to the regime.
12. AIH like many liver diseases involves quite a few blood tests. If you are someone who has difficulty when people take blood remember that a warm arm/hand and drinking plenty of water always helps the process!