Bad news

Nothing's getting lowered. The hell with this shit

Autoimmune hepatitis sux

And this is what's going to kill me

I'm so mad 😡

[Ktltel]

Jenny,

I'm so sorry. So what is the game plan? What are they wanting you to do now?

[Hidden in reply to Ktltel]

Not lowering anything and I have to go back to the Mayo next month. On a good note 📝 I have no bile duct damage

[Ktltel in reply to Hidden]

That is excellent news!!! Good. Some hope at least.

[4pjx__]

Crap. Try to be patient Jenny. Your body is going to get better on it's own timeline.

[Ktltel]

Jenny, I came across this in case they want to try again....

Alternative Agents

Budesonide may offer an alternative to prednisone. In a prospective, double-blind randomized trial by Manns et al, 60% of budesonide-treated patients had normalized liver chemistries 6 months after initiating treatment, compared with 39% of prednisone-treated patients. [50] Furthermore, steroid-specific side effects were seen in only 28% of the budesonide-treated patients but in 53% of the prednisone-treated patients.

Budesonide was given in a dosage of 3 mg three times daily or twice daily. The initial prednisone dose was 40 mg daily, tapered to 10 mg daily. Patients also received azathioprine 1-2 mg/kg/d. [50] Longer-term follow-up is needed to better assess the efficacy and safety of budesonide.

Based on moderate-quality evidence, the 2011 BSG guidelines strongly recommend use of budesonide for prednisolone-intolerant patients.

[Hidden in reply to Ktltel]

He doesn't want to change anything right now. He wants to see if it's the azathioprine or prednisone that's not helping or if it's a fluke elevation. I don't know what to say. I haven't been taking my meds at the same time everyday. I'm having a bad time with azathioprine and prednisone

[Ktltel in reply to Hidden]

Don't lose heart. They will get it figured out.

They messed up my labs today. Only one order was called in. None for my liver enzymes. I waited most of the morning and into the afternoon for my Doctors, nurses to return my calls. They never did. There are just so many sick people out there, sometimes we just get lost in the shuffle. I'll be having my labs on Monday morning now. Finally all the orders were called in. It's 4:10pm. I've been trying to get in and have them done since 9:40am. Crazy.

[littysgirl in reply to Ktltel]

Thank you so much for that report. I have been avoiding prednisone so far because I've had it before for other illnesses and I hated the way I felt on it. I couldn't imagine taking it indefinitely and have been afraid that my doctor would eventually insist on it. This gives me hope that there is an alternative if I get to that point.

[Hidden in reply to littysgirl]

Prednisone is a maracle drug. It works fast for me. I'm taking azathioprine and Urso also. My alt lowered fast with prednisone

[Bakerc]

Jenny..please stay strong. I really know it is very hard. But be that fighter. Dont let this defeat you or your spirit. I really still dont have any answers. But i have been driving my self mad. I know i can't go through life like this. So I try to push myself a little at a time. But there are days that i cant get put of bed. Embrace the good days and rest on the bad days. Best wishes things get a little easier

[Hidden in reply to Bakerc]

I'm trying. Thank you

[Hidden]

My husband talked to the professor and he said that my igg is at 843 but 2 months ago it was 1363. I am going to digest this. My pbc is under control. It's the aih that has its ugliness on me

[Newengland01]

Jenny, the azithroprine worked for me and my labs started going into normal range after about 6 months. I get labs every 6 months now and an ultrasound every 6 months as well. It's been that way for 4 yrs. I had the chance to stop the azithroprine but if it comes back, then I would have to start all over again and I didn't want that. So I decided to stay on the azithroprine. I take it before bed too and always have. I work full time and it does get better.

[Shulsey]

Aww Jenny, I don't know anything about aih. But, I do know that the stress & getting pissed won't fix anything. Try to be patient & strong. I understand, as do the rest of us here, that it's very difficult at times. Pray & leave the worries to the Drs. I say this, but in the long run, do the same thing you're doing now. We'll get through this!!! ❤️

[Hidden in reply to Shulsey]

I love ❤️ my new family. Thank you.

[Pamela4475]

So sorry 😔

[Ohio82]

🤗 Hugs!! Life is so frustrating with our diseases. Remember we are here for you.

[Biddyb]

Jenny we are all routing for you it is hard but try and stay positive and take each day as it comes you seem so low I hope you pick up soon positive mental attitude