Re: Digest Number 3513

[Guest guest]

In a message dated 3/1/2004 2:45:43 PM Pacific Standard Time, writes:

hi Cora.....dizziness, head in clouds feeling etc etc...all these I felt before being dx, as well as nausea. . . .

Jan

Yes, I remember the day I was waiting to hear my diagnosis talking to one of the partners in my firm, trying to give him a very simple piece of information, and I literally could not put together a sentence. I didn't realize yet that I was particularly ill, and I couldn't understand what was happening. Neither could he. As he didn't like me to begin with, it was an awkward time. I think he assumed I'd taken to drink.

That same day another partner, visiting from out of town, complimented me on how well I looked, saying it was nice that I'd been able to get some sun. (My ordinary, healthy skin color used to be extremely pale.) In reality, I was not tanned at all but extremely jaundiced. Even my eyes and saliva and fingernails were orange, and my urine was brown. I didn't know that was any big deal.

Now, after nearly four years of successful Prednisone/Imuran treatment, people often comment on how well I look: that's because my face is plump and my cheeks are rosey and my lips are red. I say thank you, not pointing out that all this is a result of Prednisone use, which leaves fat pads on the face and thins the skin so the cheeks and lips are bright. Prednisone also causes tiny broken blood vessels, which people read as pink cheeks. People often tell me that "you just glow, you're vibrant, you have a light inside." Honestly, those words are literally used often -- and its really just Prednisone making blood vessels show through. As a result, I look exceptionally healthy, which isn't the case. Well, that's a lot better, a lot more useful to me, than looking sickly.

Harper

[Guest guest]

you may be reducing Prednisone too rapidly. You don't mention what dosage you're taking now. Usually the initial reduction comes in large increments; it happens pretty rapidly. After that, one reduces very slowly, far more slowly than 5 mg a week. I think it's at about 20 mg that the reduction rate is slowed, typically. Everyone is different. You should be monitored through very frequent blood tests to see if your liver is doing well with the reductions. This is essential; insist on it. I started at 80 mg, and I had a blood test at with each reduction and sometimes more often. Do you have a reference book, such as Palmer's Guide to Liver Disease?

Harper

From Jean: Has this happened to anyone else? I have been treated for AIH since Christmas, 2003. I am currently being weaned off pred. I started at 40mg a day for a month and then started 100mg of imuran. Each week I am going down by 5mg until I reach 5mg a day along with the Imuran. I started to feel absolutely great about two weeks after starting the pred. but today, I felt like I have been sideswiped by a train. Extreme fatigue, dizziness and a feeling of passing out.

[Guest guest]

My GI said that reducing stress and resting wouldn't help me recover more quickly and wouldn't help my liver heal, although it would make me more comfortable. Without proof, I strongly disagree. I was fortunate enough to retire early and get into a low-stress, restful life, and I feel (again, no proof) that it made a huge difference. Also, I think I would have lost my job because I wouldn't have been able to carry out my job responsibilities. I had been working 12 to 20 hour days and then suddenly had to quit. Look into whether your state offers any sort of short-term disability compensation. In California, I was able to get twelve months of my full salary. I didn't know I was eligible until my doctor asked if my payments were coming through okay! Payments? What payments? Wheeeee!

harper

In a message dated 3/1/2004 2:45:43 PM Pacific Standard Time, writes:

Message: 10 Date: Sun, 29 Feb 2004 19:21:31 -0600 From: " Kiland" <patkiland@...>Subject: StressI am newly diagnosed with AIH and taking 30 mg Pred. per day. My job is unbelievable stressful, and before my diagnosis I was planning to retire in July. To keep up with the job responsibilities, I work 45 to 55 hours per week and am often very fatigued. I would like to hear from other people if they have recovered more quickly when they have tried to minimize stress in their lives. If minimizing stress is helpful, I would consider retiring a couple of months early. I am curious if many people changed or cut down on their employment and if these efforts were helpful.Thanks so much. This web sight is a God Send!Pat

[Guest guest]

, AIH is not curable, but it is treatable. Most people who respond to standard treatment for AIH have normal lifespans. Several people in the group have PBC as well as AIH. Do you have a reference book for liver disease, such as the one by Dr. Palmer? I think would be a good starting point.

Harper

In a message dated 3/1/2004 2:45:43 PM Pacific Standard Time, writes:

Message: 13 Date: Mon, 1 Mar 2004 11:26:04 -0500 (EST) From: Godin <nancygodin1956@...>Subject: (unknown)Hi I am newbi and was wondering how many people with AIH alsohave PBC and how different are they as I have both but hadPBC first and know more about it than AIH. Is AIH curable orjust managed. I am on Pred and Imuran but I find it hard to takebut what can we do. If it doesn't kill you it will cure you (hee hee)Have a great day everyone in MontrealPS is there anyone else out there from the Montreal area?

[Guest guest]

and Joanne, I'm so very pleased that things are working out well for each of you. I think of you often. Best wishes.

Harper

[Guest guest]

harper,

I started at 40mg a week and after a month went to 35

for two weeks, then 30 for 2 weeks, then 25mg for

1week. After 1 week at 25mg i reduced to 20 and that

was the day I felt so horrible and it hasn't improved.

I am seeing my doc. on thurs. and I plan on getting a

blood test done tomorrow so she will have the results

for the appt. I know something is out of whack and I

want it fixed! This was the appt. where I was hoping

she would say I could go away for a few days in March

for some r and r. Now I am not so sure I want to go

anywhere feeling like this. Thanks for the name of

the author. I will send my husband out for the book

tomorrow. I read with interest your response to

I think about stress reduction. I teach young kids

and reports are due. Things are very hectic at work

and I wondered if this too may have been a trigger. I

have been debating taking some time off or just taking

early retirement as I feel totally exhausted again.

Maybe when my doses of pred. get adjusted I will feel

better.

Jean

______________________________________________________________________

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[Guest guest]

Thanks Harper

I will get the book

in Montrealflatcat9@... wrote:

, AIH is not curable, but it is treatable. Most people who respond to standard treatment for AIH have normal lifespans. Several people in the group have PBC as well as AIH. Do you have a reference book for liver disease, such as the one by Dr. Palmer? I think would be a good starting point.

Harper

In a message dated 3/1/2004 2:45:43 PM Pacific Standard Time, writes:

Message: 13 Date: Mon, 1 Mar 2004 11:26:04 -0500 (EST) From: Godin <nancygodin1956@...>Subject: (unknown)Hi I am newbi and was wondering how many people with AIH alsohave PBC and how different are they as I have both but hadPBC first and know more about it than AIH. Is AIH curable orjust managed. I am on Pred and Imuran but I find it hard to takebut what can we do. If it doesn't kill you it will cure you (hee hee)Have a great day everyone in MontrealPS is there anyone else out there from the Montreal area?

[Guest guest]

" and I literally could not put together a sentence. "

oh how I hate those moments! I thought I was getting a brain tumor

or something! The dizziness, the headaches, the not being able to

say what I wanted....so very frustrating! Now I know that it is

part of this illness.

Cora

[Guest guest]

> " and I literally could not put together a sentence. "

>

> oh how I hate those moments! I thought I was getting a brain tumor

> or something! The dizziness, the headaches, the not being able to

> say what I wanted....so very frustrating! Now I know that it is

> part of this illness.

> Cora

Hi

I know what you are talking about...they treated me for depression

when I was going through that period before they found out I had AIH

along with the mixed connective tissue diseases. When it started I

told my doctor at that time - I didn't mind losing my hair or any of

the other things I was going through but please help me with my

brain. She did some blood work and said I most definitely needed to

be on an antidepressent and that is where I was at for almost 7-8

years. I read somewhere that when the liver does not work properly

that you can get an ammonia build up and it goes to the brain. From

what I went through I do believe that is what the problem was with

me. I know that when I went to bed one night after having washed my

hair I wrapped my head in a towel and went to sleep. When I washed

the towel all of the fibers in the towel washed out and left the

imprint of my head where I was lying on it. I can not think of

anything that could have caused it except my scalp was sweating away

the ammonia. Since I have been on prednisone and immuran for over a

year now - my mind is functioning so much better. I have managed to

learn how to use the computer this past year and learn a lot about

printing at work. I have learned how to create documents and become

functional again. I had at one point gotten to the point of having to

have someone with me at all times when I went anywhere and not even

talking for 8-10 hours at a time. I was like a walking vegetable. I

read that sometimes at near end liver diseases that the ammonia

builds up on the brain and can cause comas. I don't know for sure but

it is something to think about...ammonia on the brain could cause

some of the problems we have been discussing..any thoughts...anyone?

Sandy in Texas

[Guest guest]

Hey everybody? Would you please trim all of the quotes in your postings, except for the pertinent parts to which you are responding? It's really difficult to find the new responses, and takes a long time to sift through the multiple posts.Thanks in advance!