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Newly diagnosed AIH and scared - what does the future hold?

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Posted 3/5/2015 12:17 AM (GMT 0)
Hi,
I was just diagnosed w/ AIH after two years of being sick w/ several pneumonias. My lab values are not nearly as high as some of you report and my liver seems relatively undamaged.

I just started Uceris and had a lot of trouble with it, as it caused some lacerations in my stomach. So off all meds for now.

But I am very frightened about the future. I am retired but had been working part time, very active, walked 5 miles a day, taking care of my young grandchildren and I'm an amateur musician actively playing with several groups. In other words, I've always been a very active person until 2 yrs ago.

Now I can barely function. I am very tired, sweaty, feeling sick and weak almost all the time.
I'm scared about what my life will be like -- will I never feel well again? Will I have to suffer the effects of the horrible meds, and then still not ever feel normal ? It's a pretty horrible thought for me.

Would love to know the experiences of others in the beginning, and how long it takes to feel like a normal active person again.

Thanks so much.
Sybil
Posted 3/5/2015 11:42 AM (GMT 0)
At the beginning I was really really tired. I felt like I had walked into a brick wall (is that an English saying? Anyway you can guess what it means!). Then I started on the meds and had to deal with those.

Then slowly and steadily things started to improve. I found it useful not to compare myself with how I felt yesterday but rather how I felt 3 weeks or a month before. Then I realised things were improving albeit gradually and not on an even path. When I went back to work things went backwards for a while until I got used to all that effort!

For me I think it was a full year before I felt completely well and didn't have to adjust my activities to cope with the AIH or the meds. That was 16 years ago now. I have had a couple of blips which were soon sorted - and I got myself a very competent hep very experienced in AIH which I think has really helped. Other than that I had a full career before I took early retirement (not linked to AIH but it fitted with our plans as a couple) and a normal life.

I have taken to retirement really well (aimed to get a part time job but never got round to it) and now don't understand how I found time for work! Doing lots of hiking and visiting touristy places midweek (much quieter). And I'm an avid gym person so try and go there twice a week. And then there are our vacations! We travel all over to see wildlife and stuff like that. Oh and I do some AIH related support work including a website.

The only way that AIH has impacted on me is that I am a little limited on where I can travel as, because of the meds, I can't have a yellow fever vaccine. So no jaguar watching in the Amazon or gorilla watching in Rwanda for me. But there are other places in Africa and South America I can go to so in the scheme of things I shouldn't complain should I?!

Others with AIH do have ongoing fatigue for reasons they can't explain - but that is a minority.

If you want to ask me any specific questions then do please email me - you can click on my name at the side of this post and email me from the details there. I can also let you have more links to other AIH resources online.

Ann
Posted 3/5/2015 4:44 PM (GMT 0)
Sybil, Good Morning!

I want to add a couple of things to help support you here.

Possibly, would you mind if we keep all of your posts on one thread for awhile so we can support you better? I find I am jumping around looking for your info. Just a suggestion to help us all know you better.

Since liver disease is so complicated, if we keep a longer history consolidated on one thread for awhile, it makes it easier to see where you are and how things are progressing. Easier to find you and follow you!

If you click on the little envelope under AIH's (Ann's) name on the side bar, you will get her email. I do hope you start feeling better, and get back to enjoying life with the grand-kiddo's again soon. Big Hugs
Posted 3/5/2015 4:57 PM (GMT 0)
Hi,
Thank you for your encouraging words.

I did find Ann's email and wrote to her, but I also just realized, by accident, when I found her email that all of her other emails were together on the page. So if I keep all of my comments on one thread, I assume that will be preferable.

Thanks again,
Sybil
Posted 3/11/2015 2:07 AM (GMT 0)
I'm not sure if this posting is going into a place where people will see it.
I added it an old post in order to not start another thread, but if this is not correct, can someone please tell me.

I live in NYC and wonder if there are others around with AIH who might be interested in getting together to talk.

I'm newly diagnosed, took meds only 4 days before I had to stop due to side effect. The meds gave me a terrible stomach ache and caused me to vomit. But now I am 3 weeks from then, and my stomach is a mess.

I would love to know if there are any others in this situation, or anyone in NYC?

Thank you!
Posted 3/11/2015 2:13 AM (GMT 0)
I see you here, so you know you are posting correctly, Sybil ;)

I hope you get some replies from others in NY. Hang in there. Big Hugs
Posted 3/11/2015 2:20 AM (GMT 0)
Thanks so much. I really appreciate your support. I've never felt so awful in my life.
Posted 3/11/2015 2:32 AM (GMT 0)
I am sorry, Sybil. Not an easy disease or diagnose. I wish I had some magic wand to wave for those suffering with any liver disease. Tough stuff. You are in my thoughts. Big Hugs
Posted 3/11/2015 2:41 AM (GMT 0)
Sorry, but one more question:

Does anyone know anything about the Barbara Volker Center for Women and Rheumatic Diseases.

It seems like they treat women like me who have been sick for a long time, just diagnosed with AIH, and my doctors all seem puzzled (and useless).

I'm beginning to feel desperate. I'd appreciate any help you can offer.
Thanks
Posted 3/11/2015 3:18 AM (GMT 0)
I spent some time on their website. They have an extensive list of syndromes and diseases they treat. There are some autoimmune disorders listed..RA and Lupis, but I don't SEE AIH in particular or others like PBC. So you'd have to get a local persons take.

Pop on to one of Schimbarl's posts...she has had AIH forever and lives in NY. She is
feeling quite I'll and may need a transplant this year but that is less usual that what ASHER from the UK tells us. Shimbari may know that clinic.

BEST TO YOU,
MamaLama
Posted 3/11/2015 6:59 AM (GMT 0)
Hi Sybil.

I am sure I can point you in the right direction for appropriate and effective medical care. Two questions - What kind of MD are you currently seeing and have you had a liver biopsy?

Try not to stress. Allow yourself to rest when you need to - without guilt or other negative emotions.
Eat healthy foods. Avoid salt and saturated fats. Fresh fruits and veggies, chicken or fish, prepared simply are always good.

And of course don't drink any alcohol.

Schimbare
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