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Posted 9/6/2012 6:43 PM (GMT 0)
Hi again,

I have aih and I was here a while ago with some questions. Now I am back.

I used to have a solid nine hours a day of productive awake time. Now I am always tired, but I can function for about four hours. After that, I am really an exhausted blob that needs to sleep.

I am also just starting menopause, and I can feel the hormones coursing through my veins making me even crankier and less productive.

The edema in my ankles is now well up to my knees, despite a low salt diet. This extra weight in my extremities is making me feel tired and sluggish along with all the other things.

Even now, I am exhausted and in bed, and I can see that I cannot put sentences together in the way that I want to.

The question is - Is this a normal progression down the slippery slope to liver failure, or do you think there are too many other stressors contributing to the severe tiredness?

Additionally, my first kid went off to college, so that is a stressor for me, and have one other stressful thing that is making me leave the house for several hours several times a week. So the tiredness has een getting worse, but since late august it has been debilitating.

Does this sound normal for someone like me with aih? I was listed for transplant 17 years ago, but the aih quieted down and I have been chugging along all these years, dealing with the fatigue. But now - this is ridiculous.

Thanks for your thoughts on this.
schimbare.
Posted 9/6/2012 7:55 PM (GMT 0)
Hi, Schimbare, and welcome back. The intense fatigue is something I experience 24/7 and seems to be getting worse...but I have hep C.

It's the lack of hormones that is causing the crankiness, etc. Have you talked with your doctor about hormone replacement therapy? Are you still on meds for your AIH? I have found that I have to reduce stress as much as possible, even though it means separating myself from my daughter and her problems, etc. And I can only commit to doing so much.

I'll let Dany know that you have posted, since she has AIH and may have some questions or tips for you.

Hugs,
Connie
Posted 9/6/2012 10:57 PM (GMT 0)

Hi!

What meds are you on for your AIH?  When was your last blood test?  When is your next hepatology visit?  I'm wondering if you have any anemia...that can cause fatigue.  Having a liver disorder predisposes you to increased fatigue...I like coffee tongue   You should speak to your doc about the fluid retention though.  They can prescribe lasix or another diuretic to relieve the pressure on your legs.

You do have to try to minimize stress.  If you can't minimize it, then you have to try to see it differently so it doesn't affect you as much.

As per hormone replacement...you have to speak to your hep about that as I am under the impression that taking external hormones is a no-no.  Maybe there is something else they can give you to help you through menopause though.

Posted 9/7/2012 7:21 AM (GMT 0)
I'd just add that my hep was happy for me to take hormone replacement therapy. I took the form that you rub into the skin and it gets absorbed that way so doesn't have to be metabolised through the liver. I think its an individual decision weighing up the risks and benefits.

Like Dany I would think blood test results are key. If you are progressing towards liver failure then the blood tests should pick that up as well as things like anaemia.

Ann
Posted 9/9/2012 7:21 PM (GMT 0)
Hi

I also have AIH and I am on estrogenplasters works fine for me.
about the fatigue I think Dany is right do some bloodwork.
Take care!
Posted 9/13/2012 5:38 AM (GMT 0)
Sorry I am so slow to reply. It has been a rough bunch of days. I got all my bloodwork done - I am just waiting for results now. I have an appointment with the gyn for the menopause stuff.
I quit some activities I was involved in, and my hepatologist started me on Xifaxan. I don't take anything for the aih, as the inflammatory process is quiet.

I cut way back on the stress and physical activity, and gee, what a surprise, I feel better.

I am wondering, how fast do people start to feel better on the xifaxan? Any side effects?
Thanks.
Posted 9/13/2012 1:24 PM (GMT 0)
I never had any side effects and it began working within a day or two. Xifaxin helps keep your ammonia levels down. That could be why you were so tired.
Posted 9/13/2012 5:07 PM (GMT 0)

I'm kinda surprised that you aren't on anything for the AIH if you were sick enough at some point to be listed for transplant.  I wonder if you are starting a flare.  When will you get the results of your blood work?  Have you had flares over the years? 

Why would you need Xifaxan for ammonia if your liver was functioning correctly?  It is an antibiotic so does he think you have an infection?  I'm confused as to why he prescribed that.

Posted 9/13/2012 6:03 PM (GMT 0)
Xifaxin helps clean out bacteria in the intestinal tract, which helps keep ammonia levels down. In this instance it isn't for an infection.
Posted 9/13/2012 6:34 PM (GMT 0)
Hi that is a normal progression of your disease. Your liver can not get rid of the proteins in your body and water follows solutes like protein, salt, etc. That is why you have edema. You cant put sentence together real well because its probably the ammonia building up in your brain. Its called hepatic encephalopathy. You probably just have the beginning stages of ammonia starting to build up in your body. Eat a low protein and low salt diet. It will not get rid of the edema all together but will help with ammonia to progressively build up. The best thing you can take is lactulose. It will cause diarrhea, but it helps your body get rid of toxins. Another reason you get edema is that the liver is the place in your body that all your blood gets filtered for waste product and toxins so a large percentage of our blood is going to your liver. When your liver is scarred, it makes it hard for your blood to get into your liver. this causes build of of blood on the outside of your liver. Our bodies try and reroute the blood and that is where esophageal varices come in. Your body makes new blood vessels so the blood has a place to go. I hope this helps you understand your disease better. The liver is a very important organ so there are many complications of liver disease.
Posted 9/13/2012 7:57 PM (GMT 0)
Hello, jointshurt23, and welcome to the hep forum. I see that you have chronic pain. Has fibromyalgia been considered? You seem to be quite knowledgeable about liver disease. Do you or someone close to you suffer from a liver ailment? If so, it is best to start your own thread and introduce yourself and your situation to other members here.

Hugs,
Connie
Posted 9/13/2012 8:32 PM (GMT 0)
Hi All,

I got some of my blood work back today, and according to my local internist, all the results seem consistent with what they've been. Granted, she is not the expert, but she will send the results to my hepatologist.

The one number that was elevated was ammonia. Six months ago it was 50 and now it is 90.

I've started on Xifaxin just 2 days ago, and I do feel like my head is clearer - then again, it just might be a psychogenic response, but I don't care, as long as I can think more clearer...and learn grammar. Just kidding.

Has anyone found a way to get this drug at a reasonable price? Obviously, I don't have high-end private insurance coverage, but I do have some coverage - and the fact is that I cannot pay for this drug and also pay for all the other bills. Has anyone had any luck getting a substantial reduction in the price of this med? I've tried a few things, but to be honest, I don't have the brain power for all the follow up documentation they wanted. It sure is hard when you are sick and you don't have competent and willing assistance.

I fell off the low salt diet, and recent stress has caused me to self medicate with donuts, scones and drakes cakes. But now I am getting back on that no-salt horse. I don't eat a lot of protein-mostly fruits, veggies and some chicken and egg whites. Some bread products, but they all have too much salt. When I feel a little better I'll make my own no-salt bread.

thanks again.
schimbare
Posted 9/14/2012 12:18 AM (GMT 0)
Here's a link for assistance with the cost of Xifaxan:

http://www.salix.com/about-us/corporate-responsibility/patient-medication-assistance.aspx

Perhaps you can fill it out a little at a time, so as not to get confused.

Hugs,
Connie
Posted 9/14/2012 2:17 AM (GMT 0)
Thanks Connie, and all who have replied. Previously I did not realize that the HE contributed to the fatigue. I've been walking more and more slowly. I did not know what the issue was, but now I know it was the HE. Additionally, I like to pull weeds and dig in the garden, and I simply could not do that at all - until tonight. What a joy to be pulling up the knee high weeds without feeling like I had to just stop.

thank you all again for your advice.
shimbare
Posted 9/14/2012 3:38 AM (GMT 0)
Schimbare, I'm glad you are feeling better. I am concerned that you may not be getting enough protein. I am not much of a meat eater myself, but get protein from beans (if canned, rinse thoroughly) in 3-Bean Chili, raw soybeans in a stir fry, or chickpeas in a salad. Dairy and soy products are good sources of protein.

Hugs,
Connie
Posted 9/18/2012 12:27 AM (GMT 0)
To your question Connie, my mom died of liver failure last december and I am a student nurse and graduate as an RN in December. I learned a lot about liver disease from my mom being in and out of the hospital and talking to doctors. I seen her disease progress to the very end. She got hepatitis C from a blood transfusion in her 20s and then was a heavy drinker for only 3-4 years. Alcohol can progress liver disease quiet rapidly. I just came on here to help others suffering from the disease to try and help their disease from progressing. Most people die from the complications from liver disease than the liver disease its self. So if anyone has any questions just let me know Id be happy to help.
And to answer your question about chronic joint pain. I have rheumatoid arthritis.

And to comment on your comment Connie about not getting enough protein. It is very important to eat a LOW protein diet. Protein causes more ammonia build up and more edema. It could potentially cause hepatic encephalopathy and fluid overload in your body.
Posted 9/18/2012 12:50 AM (GMT 0)
Jointshurt, I am very sorry for the loss of your mother to complications from liver disease.

Congratulations on getting your RN! It must have been difficult with your mom so sick. The RA is also a challenge.

I have seen instances where a low-protein diet is required. However, more often I see it suggested to eat no red meat and preferably eat plant protein instead.

After my transplant, I was told to focus on protein as it helps with healing and building muscle.

Hugs,
Connie
Posted 9/18/2012 1:02 AM (GMT 0)
When my liver was failing, my nutritionist advised me to eat as much (non meat) protein as possible. I mainly ate fish, chicken, or vegetarian.
Posted 9/19/2012 5:52 AM (GMT 0)
Thank you all for such thoughtful advice. I am getting back to my old state of normal, though it will take some time. I just hope I can feel as well as I did a few months ago before the HE started up.

I am frightened for what the future holds. I have been able to be very stable in my disease process for about 16 years. I want to get back to that level of stability, though I am not sure it will be possible. This whole HE thing has freaked me out.

On the other hand, this brush with HE has reminded me to re-focus my life onto the things that are important and fun. My car is on its last legs. I think it is time for a convertible. And I want to raise chickens, but I had to forget about that for a while. Now, I am thinking about how to set up the coop! I am more focussed on my children, which is a very good thing.

So, anyway, thank you all once again. Be well.
Posted 9/19/2012 2:16 PM (GMT 0)
Schimbare, in regard to fearing the future, just focus on today and tomorrow will take care of itself.

Hugs,
Connie
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