Hi, Lady L. I just wanted to welcome you to the forum. I have hep C, cirrhosis, and am a liver cancer survivor. There are several people on here who have AIH, so you've come to the right place. You will get a lot of support from everyone.
My doctor has prescribed cellcept but I haven't had a chance to start that yet. I hope that it doesn't cause me to be as ill as the Imuran does because I cannot continue to be sick every day from a medication.
Will i have to be on prednisone forever?!?!
I am so grateful to have found the support of you all and appreciate your kind and motivating words!
I have a lot of life left in me so I don't want to let this disorder/disease keep me from living.
Welcome to the forum I also was diagosed with autoimmune heptatis 2 years ago and also was on high doses of prednisone and gained over 20 pds. I also could not take the Imuran and had to go back on the higher dose of Prednisone. My liver biopsy confirmed autoimmune hepatis caused by Lipator. My gastro doctor slowly tried to wean me off of the prednisone but when I got down to 10mg it started back up again. I then went to my Hep doctor at the Center for Liver Diease in Miami Fl. The doctor then put me on 20mg of prednisone and I stayed at that level until my liver enzymes were normalized for six months she said that patients with autoimmune hepatitis need enough time on steriods to undergo remission, and the most common mistake is try to taper down/off the steriods to soon and not giving the patient the chance to enter full remission. I then repeated the liver biopsy which showed miminual inflamation I was then told to reduce the prednisone to 15mg for a month, then 10 mg for a month, then 2.5 until off. I am happy to report even though it took about a year I have been off the prednisone since May 1st and have my liver enzymes done one a month and all is normal. I have lost all the weight and feel great. So yes it is possible to come off prednisone and go into remission. I think one of the most important things I did was go to an expert in automiimune hepatis who deals with on a daily basis and not a gastro doctor who may she one or tweo patients with hepatitis.
Do you know if it having this disorder hinders your chances of having kids?
I was just on Prednisone I could not take Imuran and my hep doctor felt that cellcept probably would also have the same affect on me. I just had to stay on the 20mg for a longer amount of time since I could not take the other drugs but it worked.
I was initially prednisone and then they added the Imuran... however, Imuran has made me very sick... and the doctor has told me that Cellcept may cause me to have other gastrointestinal problems. I go for a follow up appt on the 22nd, maybe he will say that I can just be on the prednisone for a while because I can't be sick every day. My numbers have improved tremendously but I know that they will want to monitor them regulary to make sure nothing goes up again. prayerfully I won't have to go on too high of a dosage of prednisone and also won't have to take anything that makes me so sick every single day
I have AIH, and I was initially on 40 pred, with all the side effects--wt gain, high blood pressure, decreased bone mass, increased blood glucose, acne, ankle swelling, the whole works!.. I, too, couldn't tolerate Imuran due to severe nausea, fatigue. AND, even on the imuran, when they tapered the pred even a little, those enzymes just shot back up!!! My hepatologist gave me Cellcept, which was much less of a side effect problem (some intermittent nausea) but it caused large intestine damage (toxicity), The hepatologist just lowered the dose a little, and everything got better. Then, he gradually tapered and stopped the pred. I was on the pred for about one year, and I am still on 750 of cellcept, with normal liver enzymes!!! Also, my old energy is back and there really arent any side effects. (and, I lost the weight!!!!!)
So, there is hope, but be patient, because it takes a LONG time for the liver to recover . I do go to a hepatologist, not just a gastroenterologist, and this is a good thing, because treating AIH is an art form. As to cause, I had a cold just before, but no antibiotics, weird foods, environmental toxins or substance abuse. So who knows????
Pink Grandma, are you ok?
I am nervous about the cellcept because if it makes me as sick as the Imuran I am in for a rough time. I pray that it isn't.
I don't want to be 'the sick one' all the time you know? 6 months ago, I was just fin
I guess I want to know if I will ever get back to living a normal life again???
Thanks for the support I may check out the other forums as well.