A Good Day

[Bigbluemonkey]

Saw my new consultant today & my new liver nurse & they were both fantastic.

He explained everything clearly to me. He is trying me on Budesonide 9mg a day which is a corticosteroid & stays in the liver longer than pred. I didnt fancy using 6MP after the nightmare I had with Azathioprine. There was a possibility I'd have the same reaction with 6MP.

MY LFT has improved:

Bilirubin 13

ALT 75

AST 66

GGT87

Albumin 38

Although it's improving he told me I need to be on meds to stop a future flare of my AIH. They are going to do regular fibroscans to keep an eye on any fibrosis & keep me closely monitered.

They were both very knowledgable & reassuring. I felt I could TRUST them which is so important. I feel more confident going forward now.

If any of you are having problems with a bad Dr/ Consultant ask for a 2nd opinion or try & ask to transfer to someone else. My old consultant was dreadful, my new one wonderful.

I had one private consultation, cost me £150 for half hour, and he got me transferred to this new NHS liver team & the difference is astonishing. Money well spent.

Onwards & upwards 😊

[Positive001]

What a great uplifting encouraging post. Great news on all fronts .Best wishes.

Laura

[AyrshireK]

Glad you had a positive appointment with your new team. There are several non purine immune suppressants that they could try - if Aza and 6MP both arn't for you then there are others. Like doctor said, long term you'll probably need an immune suppressant to stop your liver from getting attacked going forward. The steroid is going to put down the initial inflammation and then the immune suppressant will tamp down your immune system to prevent it for resuming it's attack on the liver.

Did you get sorted with a more appropriate/safe treatment for your oral thrush?

Best wishes,

Katie

[Bigbluemonkey in reply to AyrshireK]

Hi Katie

They were very good. It would be easier to list the meds:

Budesonide 9mg (3 tablets)

Prednisolone 15mg (3 tablets)

Taken together in morning. I stop taking pred after one week & stay on Budesonide

Adcal-D3 2 tablets a day (thanks for advice)

Nystatin 4 times a day

Co-Trimoxazole 1 tablet a day (Ive got a microscopic fungus in my lung so I've got to take anti-biotics. Its nothing but because of the immunosuppression could develop & spread)

They are giving me a blood test in 4 weeks to keep an eye on things.

Nurse told me one of the reason for AIH diagnosis was that my IGg was high. I think she said over 20. They are going to test immunoglobulins regularly too.

So I'm really, really pleased 😊👍

I've taken all the meds today & I feel fine

They've even given me an email so can contact them if I have any problems.

The lovely thing is they feel like they care & want to make me well

The old consultant wouldnt tell me anything so I felt unnerved & disoriented. He actually frightened me

Its so much better now thankfully

Thanks for your help & support 👏👏👏😊

[Readlots]

I’m glad you’ve found a good team to support you. Information is so important to make you feel like you have control over this illness, and that makes you feel better in yourself.