Posted 9/27/2009 9:19 PM (GMT -6)
Im sorry to hear about your daughter's diagnosis. I'm not sure about the imuran with liver disease, my mom couldn't tolerate it. I have advanced liver disease, though not end stage that I know of, I haven't really been good lately bout my checkups. They thought I had AIH and I think that I do, as prednisone really helps my liver.
Porphyria (sun sensitivity) is actually a liver condition where the liver cannot produce needed substances to deal with the sunlight. Drugs like plaquenil exacerbate this, and you can end up with dark patches on your face that aren't real attractive, as well as the other lousy side effects. Nausea is common. Certain drugs make it worse. I have found that my liver doesn't metabolize the drugs that are restricted for patients with porphyria. you may notice patterns to what she can tolerate in terms of medication when her liver is irritated so checking out that site sort of gives you an idea of what drugs might make sensitivity to sun worse. And most of those drugs are hard on the liver.
Make sure your daughter has consults routinely as needed with a real hepatologist, not a gi guy or other type of doctor, but a liver specialist (hepatologist). Both you and she will benefit greatly from it, even if its once a year. The best hepatogists are at transplant centers, and since AIH is relatively rare, it would be good to maybe see someone at a big center.
I have a terrible time staying out of the sun. Having aquariums has given me the feeling of outdoors and sunlight without the sunlight. I have wood blinds and curtains. I do things at night. Heavy duty spray sunscreen certainly helps, as does covering up. It will depend on what she can maybe tolerate, as hippi, sue and lucy say. My liver swells when I get too much sun and it is unpleasant. I still get too much though ad my skin is a mess.
IMKindly runs a site that has a part dedcated to autoimmune hep and people there have it and theres lots of good information there. Its a good place to go. PM me if you can't find IMKINDLY and LIVER FAILURE on google. You have to register, but after that its easy and well worth it. They have staging docs, and treatment and types of AIH and all. PM me if you have trouble finding it.
Diet is important for liver and all illness I think. A hepatologist can likely recommend dietary changes that might make a big difference in dealing with AIH, I don't know but I'd at least ask what to avoid.
I'm sorry you and your daughter have to deal with this. Liver disease is really a pain, then the other on top. The fatigue can be really bad. But from what I understand, and I may be wrong, the AIH can go into long periods of remission and docs are pretty good at gettingthe flares under control.
I will keep her inmy thoughts and prayers.
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids