Connect
Autoimmune hepatitis.
Diagnosed with autoimmune hepatitis .
Already have PMR , GCA, and Graves’ disease.
Taking a pass on treatment. The drugs sound worse than the condition and I am 71 years old. I believe 5-10 good years better than 10-20 poor, sickly years. Any try AZA without side effects. Already taken prednisone for 7 years and finally down to one mg. Staying there.
Like
Helpful
HugInterested in more discussions like this? Go to the Autoimmune Diseases Support Group.
Connect
How bad are your liver enzymes? And what were the results of your biopsy? Mine was only mild fibrosis, so fully recoverable.
Whether the cure is worse than the condition depends a lot of how bad your liver already is. There's a FB group support group for AIH and multiple members have needed liver transplants, some very quickly after dx. I would also prefer to not take the meds (there is no cure), but don't want to risk a liver transplant.
Well as I mentioned I have fibromyalgia and have yet to find any relief from the pain although I stay as active as possible and I sleep about 3-4 hours a night. I had Lupus about 26 yrs ago and misdiagnosed until 2004 then Hydroxychloroquine helped. Then came fibromyalgia but meds don't work for me. So when I was diagnosed with AIH meds made my belly swell and the pain was widespread aching and I could barely move due to Azathioprine and Budesonide, then they tried them seperately and same thing happened. With Cellcept my numbers are usually pretty good once in awhile they go a bit higher then normal but the belly still swells and I have water retention. If I skip a couple of doses when I am feeling ill the belly goes down almost flat, that is my only complaint.
Mild for now. Enzymes high 100,S. They will monitor every few months. For past year and a half stayed about the same. No one wants a transplant. If young and otherwise healthy take the meds.
Really, just read could be helpful.
Some say carnivore diet but realistically can’t imagine that.
There’s always ice bathing. I give up.
Wow. So are you getting ascites? Did they do the test to determine if your body can process the aza? Or is the swelling more gastro?
I have no symptoms whatsoever which is why I don’t want to take the meds. Just because I have other autoimmune conditions and high liver about 180 they did a biopsy. I feel fine, if I wasn’t tested would never know. Don’t drink, don’t smoke, normal weight, eat healthy. If I start having problems would be a different story.
It seems to me that I am developing ascites and my primary dr seems to think so ,I have an upcoming appointment in July with the Hepatologist so for now I'm having to take Furosemide. They did test me and even though it says my body can process the medications, I am still having a lot of pain when I take them so all the doctors who have treated me have said to stay off them. Now I seem to be having episodes of allergic reactions to petscan injection medications, to the injection for stress testing, Sestambi scan injections, pizza, something I didn't have in the past and it's scary not knowing how my body will react to anything that goes in it. These are tests I've had many times over the years so not sure what all is going on, I have an appt with the Allergist in a couple of weeks.
Unfortunately if you wait until you have symptoms, your liver is already damaged.