AIH

Hi, 47 and diagnosed 2010 within 3 months of going to a hepatologist. blood work was way out of whack, couldn't even do the liver biopsy until given a blood transfusion. started on pred 20 mg for a yr and about 4 months, doc said I was in remission, reduced pred slowly to 5mg. Then, did more blood work and ultra sound. still stable on both. Ive had a bone scan and that was ok . I take 1000mg of calcium a day, 1000 vit c a day, B12 once a day, vit d3 on a day, and vit E about 2 to 3 times a week which helps me with energy. I ve got to see him again in september and do the same old blood work and ultra sound. No insurance, i pay office visit and thats it. I got assistance with the ultra sound and bone scans. I still make payments to dr's and labcorp in very small amounts. Iam still very sore in joints and muscles ( shoulders, chest, hands, knees, thighs, legs, feet etc.) Please someone tell me about acute attacks of this disorder. I have contusions beneath the skin which my doc says to see a regular doc about that but i believe it is caused by the low producing cells by bone marrow which causes my platlets to be low. I have this non itching and non painful rash on my legs and arms and upper chest area. I read about something called thrombcotosis or at least the first part is right which basically is a side effect of AIH itself. It said that blood transfusions might be necessary. Im in pain every day and get worse when I do physical work. I take ibuprofen 200mg about once a month which helps temporarily. I try not to take anything because I know the liver will be involved in the process except for vit's and pred. When I first started pred I weighed 195 and went up to 225. When I went down to 5mg I have lost 10 pds so far. It is easier to stay away from food now. I experienced paranoy, flush face, slight moon face because I have such a long face, nervousness, sometimes high blood ( 140/90) and that started to become consistent around 130 to 135 over 80 to 85. Now, 120 to 125 over 75 to 80. During all this time my glucose has danced all over the place now it is 90 to 140 consistantly. It takes everything everyday to stay focused on a healthy diet plan. Sometimes I waiver but for the most part it is easier now (fruits, whole wheat everything, vegetables, sea salt if used because the sodium is so high in everything, low fat, low or no sugars , low or no calories) .I don't know how or why I can't get disability benefits. I worked my whole life and can't do what I used to do because of this disorder. The job market doesn't help either. How long can you expect to live after a liver transplant? Can you drink alcohol. I haven't since 2010 but sometimes a cold one would be nice or some gin and orange juice. My belly is so bloated even with the lactolose. I hope I get a lot of answers or some feed back at least from this forum. That would be nice!

Hi there

You asked a lot of question that I will try and give my view on as many as I can. But as ever please bear in mind we are not doctors here. I know that other people including one of the moderators will be able to add a lot more. I am a bit confused about what meds you are on. is it just 5mg of pred or do you take azathioprine as well? If you take both then you may want to talk to your doctor about the possibility of trying to come off the pred (and perhaps increasing the azathioprine) to see if it is that causing your joint pain as it does that in some people. But whilst the vast majority of people do very well with AIH in some the joint and other pains plus fatigue continues despite normal blood test results and you need to adjust your lifestyle accordingly. The docs can't explain why some people are affected like this. I have been lucky and been on meds for 13 years now. Able to work full time until my recent retirement and do not have any of the joint and other pains - just a few minor side effects from the meds.

You do need to check with your hep about the supplements you are taking. They are probably OK but it is important to double check. Likewise he may or may not say it is OK to take ibuprofen even once a month. It is important to have personalised advice as we are all at different stages of the disease.

Many people I know with the joint pain and AIH have found a product called Bio Freeze helpful. Again do double check with your doc but I have never found any that object to its use. It basically induces a feeling of cold in the area you rub/put it on which seems to help.

The contusions under your skin - if your hep has said it is nothing to do with AIH then I am wondering what makes you think it is. I know via another forum many many people with AIH and I have never heard of a side effect called 'thrombocotosis' or anything similar - nor a rash apart from as a reaction to meds. (You aren't thinking of thrombocytopenia are you which is another autoimmune disorder? If so then it is quickly diagnosed from a blood test and as far as I know there is no link with AIH). I know that pred can cause blood sugar problems in some people but not usually at the low dose you are on. Pleased that your very slightly high blood pressure has normalised.

I am confused about the severity of your disease given you are taking lactulose. Have you been diagnosed with ascites? If so then it is doubly important that you check with your doc before doing anything.

I am not aware of any special diet for AIH other than a normal healthy diet.

Alcohol is one of those questions that different docs give different answers on - and again it is essential that you get specific advice. I was told I could drink alcohol occasionally once my AIH was well controlled. But I know some doctors (and most docs in the US) recommend complete abstinence. But again it is absolutely essential you get personalised advice on that as only your hep knows how much liver damage you have. There can be no doubt that alcohol puts a strain on the liver so it seems common sense apart from anything else to reduce that. I know I am repeating myself about this personalised advice bit but I can't over stress how important it is. It may be helpful to draw up a list of questions for your next hep visit so you can get advice on everything you have asked.

In an acute attack of AIH which you asked about the main symptom is raised LFTs. Some people get jaundice but others don't. You do get to the stage when you can tell I think. With me it is the increasing nausea and then the yellowing of the skin and eyes but I am unusual in that my readings go sky high very quickly when I have a flare. But we are all different.

Sorry I can't help on the disability question as I am in UK where the system is different but I am sure some others will be able to help.

Ann

Post Edited (AIHer) : 7/27/2012 7:10:44 AM (GMT-6)

Thank you so much everyone! I feel like a burden has been lifted with just hearing what I have heard so far because no one in my family understands exactly what Im going thru with this disorder. I was taking 20 mg of pred and no other med's. In two months I was down to 5 mg. My doc recommended the vit's. Calcium for the bones because of steroids, vit c because the pred making me more susceptable to infections, we both agreed on the D3 which I think might help with the jaundice appearance. I decided to take the B12 and E which I tell my doctor all this everytime I see him what Im taking. I have more of a red skin appearance . My understanding the d3 helps with the production of melatonin or appearance of the skin. I drank before pretty heavily but don't really miss it. My doctor at one time said that alcohol had little or nothing to do with this AIH. The doctor every time I see him exams my stomach area, but I told him I was constipated . He recommended lactoluse to relieve that and to rid my body of any toxins that my liver might not be getting rid of. I don't won't to be on a bunch of med's until last resort. I will inquire about the lasex (think you). What is LFT, i guess I would know if I had them. Im not sure about the ascites, I don't remember him saying anything about that but I will check my health records that I have gotten from him and continue to get from him about every procedure or visit. I got the thrombo word and condition from researching petechia which shows a picture of what it looks like and that is to a tee what they look like on me. While the radiologist said I had a textbook picture of a liver my doc said stage 4. I've got the pics of my ultra sound being sent to me so I can look at them. Thanks again everyone!

Hi there - glad to hear you are feeling better.

Sorry I got you confused with my comment about the lactulose - luckily Dany corrected me! My brain moved faster than my typing so I have now amended my post. Let me explain. Lactulose can be used as a laxative - and that is clearly why your doc prescribed it for you. But at different doses it can be used to remove ammonia and toxins when the liver is starting to not work well. I was concerned that because you had been prescribed lactulose and you say you had an enlarged belly (which can be a sign of ascites) that your liver disease was quite advanced. But now I know that you were prescribed it as a laxative then it is clear that your AIH is well under control. If you had ascites then you would know about it I'm sure.

By the way LFT stands for Liver Function Test - this is the standard set of blood tests to see how well the liver is working. Many of the readings in this range of tests are increased during a flare.

I am glad that your doc has Ok'd all the supplements. I have never heard of D3 for improving the skin's appearance so thats news to me. But it is standard to take it with calcium to protect the bones whilst on pred. My skin is quite sallow so to start with I was often convinced I was going yellow and would dash to my family doctor for some blood tests thinking I was jaundiced. They were invariable normal and I'd calm down.

AIH is not at all connected with alcohol - it is your own immune system wrongly identifying your liver as an invading germ and attacking it.(That isn't a very scientific explanation but it is how I best understand it).

Others may know more than me about staging - my hep doesn't find it a particularly useful tool so doesn't use it. The important thing to remember with AIH is that, unlike most other liver diseases it can be controlled. And even if there is permanent damage (cirrhosis) there is every likelihood that the damage will not worsen so long as the disease is kept in check. I know people who have had AIH for 30 years and are still fine.

I'd agree with Dany that if you do drop your pred dose you need to go really slowly. I took 3-4 months maybe longer to go from 5mg to zero.

I can understand your reluctance to take meds long term but you do need to weigh up the risk of a relapse if you do come off all meds. Very few people with AIH are able to stay off meds long term and any relapse can cause further damage. Many people prefer to remain on an immunosuppressant like azathioprine than risk another flare and possibly more damage. It is a difficult decision.

Ann

Time2010,

So you still haven't had a biopsy?  My hepatologist is like Ann's and doesn't stage things.  I had severe damage but no cirrhosis.  As Ann said, even with some cirrhosis, AIH patients can live normal lives and never need a transplant depending on how they respond to medication.  How is your hepatologist staging you based on an ultrasound?

Please speak to your hep about going on an immunosuppressant as this will help you wean off the prednisone.  The immunosuppressants (typically azathioprine) are considered "steroid-sparing" medications.

Re the alcohol thing...as Ann stated, alcohol isn't a trigger for AIH.  However, as with any liver disease, you don't want to put any added pressure on the organ and since alcohol is a toxin, that's a tough one for the liver to metabolise.  Speak with your doctor, I'd say you're still too new at it for them to even allow an occasional glass.  Mine told me to stay away from it and maybe in a few years I could have one glass on a special occasion...that never seemed worth it to me so I drink water and coffee

"Idiopathic thrombocytopenic purpura" is due to low platelet count.  Are your platelets low?  How often do you have blood work?

 

I ve had a biopsy but not before having a blood transfusion because my platlets were so low. Cirrohsis too. I drink water and real fruit juices or homemade smoothies from real fruit. I watch my salt and fat intake and do a lot better than I have ever done before. Fast food , maybe once every two weeks.