Friendship for people with aih, is there any here?
Which type aih does everyone have? - 0.0% - 0 votes
Whats the best website for info on aih? - 0.0% - 0 votes
How do people cope with aih? - 0.0% - 0 votes
Aih is a scarey disease yes? - 100.0% - 1 votes
My liver doc isn't supportive, nor my GP! - 0.0% - 0 votes
If you have aih symptoms, your not losing your mind, get a full test! - 0.0% - 0 votes
Posted 4/5/2014 5:13 PM (GMT -6)
Hello, im new and from Australia!
Hello, I was diagnosed with aih early November last year, and I have not been myself health wise for up to three years prior. I went to my local GP regularly complaining of feeling sick and my upper right side (my liver area) would blow outwards and cramp up to the point of not knowing what to do, the pain is terrible but they kept saying its just a bowel blockage, and I was literally going insane begging my doctor, then finally last year around mid September, i went to my doc feeling quite sick and lethargic again, and usually with a temperature. My doc gave me a written report to get me to my local hospital within two weeks, he suspected a stomach ulscer?? I went home feeling so down and medically neglected i thought it was all over and nobody in the medical profession cared! Two days later, I was on the mobile to my best mate when I dropped to the ground clutching my right upper side and dizzy as, so i rang my daughter who rushed me to my local hospital where I was put in a ward asap, on a drip blood tests n monitors all over me, I've never been so afraid for my life ever! The doctors were baffled as i lay in my hospital bed after five days of, not only me but my doctors not knowing why my body was shutting down? Day five i was taken for a liver biopsy, they took two samples and the next morning the liver docs came in and told me i had aih. I had never heard of it and there was so much to take in. It's now April 2014 and i have never felt so alone, yes, alone! Ever since I got aih ive had to battle through it all basically without knowing what to do if something related to aih were to happen, which it did on many occasions but noooo my local GP told me to talk to the liver doc and vice versa and other symptoms arising then sent home from an appointment with my liver doc who tells me to go down to 75mg with my imuran only to find when I get home that im already on 75mg wth?? I feel like im being treated like an idiot, i have concerns but they dont care cos im not allowed to speak to any of them, including my doc and I'm not the only one! Im sorry if ive gone on a bit but im a human being and deserve no different treatment than any other patients! Nice to meet you all and thank you.
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Posted 4/5/2014 7:48 PM (GMT -6)
BA...thanks for reposing. Hope the days go better for you soon. We are in the US, but Mike has Hep C, not AIH. We have two real experts on AIH, Dany from California and Anne from the UK...I'll send them emails letting them know you are here.
We are working behind the scenes, I haven't mentioned it here before, with a high school friend of Mike's who is an expat in New Zealand. He has a wife and child there and has built a life there for many years. He has Hep C and is having a go round with the doctors trying to get some of the new treatment drugs for his Hep C before it is too late. The approvals are coming later than in the US and Canada, where we have approved drugs the docs can just prescribe, he is trying to get into a study.
Let me get off to my AIH ladies. Welcome aboard.
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant May 1, 2011, FL
Began Hep C Treatment: Sovaldi/Olysio March 3, 2014
Beginning Viral Load = 3,700,000
Week 1 Viral Load = 302
Week 2 Viral Load = 36
Week 3 Viral Load = <15 Detected
Week 4 Viral Load = <15 Undetected
Posted 4/5/2014 7:51 PM (GMT -6)
Hi BrokenArrow, sorry you have been through so much. I do not have info on aih, but this is a super support group. Some others should post soon who have some info which can be helpful.
"No one cares how much you know until they know how much you care." T.R. ribavirin and sovaldi...24 weeks. 1a
Undetected on first vl check end of week 6
Posted 4/5/2014 8:23 PM (GMT -6)
Thanks so much for replying, I'm so glad ive finally found somewhere where I can talk about AIH and hopefully help others too. Thank you Music and Mama, great to meet you.
Posted 4/6/2014 1:02 AM (GMT -6)
Hello Brokenarrow and welcome to HealingWell!
Sorry to hear you are having so much trouble.
What are your blood levels? How often do they have you come in for lab work?
Is there any way you can be transferred to another hepatologist?
If you're having issues with Imuran (I'm assuming since you are decreasing your Imuran dose), there are different immunosuppressants you can try.
I have to cut it short tonight as it's already Sunday :), will post more tomorrow. For starters, search for my older posts or for Ann's (AIHer).
Co-Moderator - Hepatitis
AIH Jan 2007
CMV June 2008
Raynaud's February 2010
Meds: Azathioprine 100mg & Ursodiol 250mg BID
Posted 4/6/2014 3:39 AM (GMT -6)
It can be very frightening to start with can't it? And doubly so if your doctors can't get their act together and talk to you - and each other.
If it is any consolation whilst it can take some time to find the right med or combination of meds that suit you once you do you will feel much much better. I have had AIH for 14 years now and am now well controlled on a drug called mycophenolate mofetil (CellCept is the brand name) having had too many side effects on azathioprine (Imuran). I lead to be honest a totally normal life - just swallow my tablets twice a day and see my hep twice a year. Had a few bumps along the way but they were dealt with.
But it did probably take a year from me first being ill to feeling much better so hopefully you will feel better soon.
Are you in a position to see a new specialist (preferably one who is experienced in autoimmune liver diseases) or GP? At the very least you need to know who to approach for advice and help. You are more than likely the only case of AIH your GP has ever seen as it is a rare disease so I am not surprised that he/she is reluctant to give advice. A good specialist will help the GP gain confidence so they know what they can and can't prescribe you, when to refer you and so on. At least that is my experience.
But if need be you may need to 'educate' the specialist on better communication! A first step would be to ask for specific advice on who to contact with any urgent concerns.