u/YellowInevitable4556

Hi everyone. I’m in the process of being diagnosed. I have high ALT, AST and GGT but normal ALP and bilirubin. I do not feel any symptoms so far other than fatigue - although I also have hashimotos, so it’s hard to say whether the fatigue comes from it or maybe PSC. I’m struggling to accept the possible diagnosis, so I’m trying to understand what comes ahead. I’d like to know for you who got diagnosed without any symptoms when did you start feeling them? I saw common ones are itching, lack of appetite, abdominal pain, etc.

Hi everyone! I’m 29F, I have been on prednisone for 6 months now. As of now I’m back to 15mg of prednisone and stopped taking azathioprine due to being toxic for me. I’ll start Cellcept at some point in the next months and I’d like to know what are the side effects you have experienced and also if there is any exam I should be taking a close look at - like blood count, cholesterol or any vitamin - while taking this med. Thanks in advance!

Hi,

I was recently diagnosed with aplastic anemia caused by the use of azathioprine. It’s been almost 3 weeks now since I have stopped taking azathioprine and yesterday’s blood count was hemoglobin 9.6, platelet 103 thousand and ANC 5017. Hemoglobin and ANC are kind of stable for the past 3 days, but platelet worries me because 3 weeks ago I had retinal hemorrhage. Does anyone know how long it may take until I have normal levels of hemoglobin and platelet? The doctors don’t intend to do transfusions anymore unless it’s extremely necessary because I already received a lot of transfusions in the past weeks. I’m really worried this can prejudice my sight permanently.

This post is informational but also venting.

Well, I was diagnosed with AIH in January and in February my doctor started with the treatment: prednisone then aza. I joined this community in February and got to know a lot about side effects and tests I was suppose to do. One of them was the TMPT test, that checks if azathioprine is not toxic for your body. Well I talked to my doctor about it because in one month taking aza I had several side effects: nausea, exhaustion, depression, etc. My doctor explained that in one month taking 50mg of aza if it was toxic for me we would’ve known already - I’d be in the hospital. Anyway, he gave me a bunch of meds so I could deal with side effects, I stopped taking aza in the morning and started taking it in the afternoon and it did get better. Then he increased aza to 75mg and now one month from it here I am in ICU, my blood count is completely altered and I’m undergoing several blood transfusions. And more importantly I’m pissed at my doctor that is now explaining to me something I already know: azathiprione can be toxic for very few people. Well if I had insisted for him to do TMPT test maybe I wouldn’t be in another nightmare in the ICU. So insist to your doctors, your knowledge matters, always!!

For those who had this problem with aza as well, which med do you take now? What side effects there are? For how long do you take them now?

Hi,

I’ve been taking pred and aza for some time now (4 months) and have been experiencing some side effects - and I’m dealing with them with more meds 🤡 However, it’s been a week that I’ve been experiencing very strong headaches. It can be related to other health issues I have such as bruxism, but I just want to confirm if maybe someone else experienced headaches as side effects of prednisone or aza.

Hi, I started taking prednisone in February and aza in March. My doctor is trying to lower prednisone and increase aza dosages slowly. He says it might take like a year and a half until we get to 5mg of prednisone and 100mg of aza. Is this standard procedure? He told me in the past he tried to lower prednisone faster and some patients just had flare ups and had to start it all over again. I think I’m just in denial of having to stick to prednisone for so long, but just wanted to know your experiences. Thanks!

Hi, I’m a 29F, was diagnosed with AIH in January this year. I’ve started on prednisone in February, a week on a higher dosage of 21mg - best week, felt energetic. Then went to 15mg and after a month started on Aza 50mg. Prednisone only was not able to lower my lab results of AST / ALT, but after a month on Aza it did lowered down.

At the beginning I thought I was going to die, specially when prednisone only didn’t work. It was tough waiting for one more month, I felt so so anxious. But now that I know Aza is working I haven’t been feeling better... I mean, I feel depressed. Sometimes I just want to stop taking all the meds, but I know I can’t. Idk if the depression is bc of prednisone or if it is bc I’m struggling with the diagnosis and grieving for my old life before the disease. I miss not knowing about the disease at all, I was just fine, living my life as usual, and now I feel depressed, I have nausea almost every day, I feel tired even though I spent my day watching TV and walking with my dog for 15 minutes. I miss alcohol, the taste of it, going to a pub with my friends.

How long did it take for you to accept the new life? I mean, I’m on psychotherapy, I even increased my sessions to 2 per week, but it’s not getting any better.