Recently diagnosed with Autoimmune Hepatitis :(

[CoriCassandra]

Hi everyone, I am new here. I have autoimmune disease and I recently have been diagnosed with AIH. I was on prednisone and due to the awful side effects, my doctor switched me to Budesonide--yet I'm still experiencing horrible side effects along with Imuran. These drugs are literally sucking the life outta me--although they have decreased my liver enzymes by just a little. What's your take on ALA (alpha lipoic acid), along with selenium, and milk thistle (which are beneficial in regenerating the liver)? I'm still reading more up on the ALA and purchased "Curing Courtney." Blessings to you all, this autoimmune is tough and I'm still in shock as to how I got this ill. This is just horrible.

[Geffy22]

Lots on here ref foods and supplements in previous posts, but no medical trials so lots of people poo poo them. Have a look here drfostersessentials.com/sto... though not so much about liver it explains how creating a higher pH is helpful. Good luck x

[CoriCassandra in reply to Geffy22]

Thank you

[AyrshireK]

Hi CoriCassandra, If you use Facebook there is an excellent and very active group/page on there with nearly 1000 members all of whom have or are supporting people with AIH. They have a wealth of knowledge and all have been where you are now as medics try and sort out the right doses of the right medications to keep your liver in check.

Might be worth popping on there - it's a closed group so everything commented remains secure. Group are very well supported by Prof Hirschfield and other top boffins in the field of Auto-Immune Liver diseases.

Might be of help to you. facebook.com/groups/AIHorgU...

All the best, Katie

[CoriCassandra in reply to AyrshireK]

I will look into that! Thanks Katie

[Xena2017 in reply to AyrshireK]

I left that group when an admin started bullying me and dictating to me. I've been very alone ever since I left it ☹️

[AyrshireK in reply to Xena2017]

It's a shame you left, its always a very supportive site, admins are all AIH patients too. Can't say I have ever witnessed any bullying at all but they do try and keep it to topic.

[Hidden]

I can confirm that the Facebook page is worth joining. I have been to two of the talks and found them enormously useful. Having been diagnosed with AIH 8 years ago, I can tell you that it will take a while for your body to get used to the medication, but after a while it should settle down and you will be able to live with it much better than now hopefully. Best of luck and do look in on the Facebook page. You will need to ask to join

[Hidden]

Good Morning,

Welcome to the forum. There is a lot of fantastic support on here.

With regards to the use of Milk Thistle and other herbal or homeopathic remedies;

The British Liver Trust does not recommend the use of any homeopathic or herbal remedies for those with any liver problems as these have to be processed by the liver and can actually damage the liver and lead to severe illness.

More research needs to be done on the use and safety of such remedies and therapies.

Homeopathic remedies are unregulated in the UK and concentrations of active ingredients vary by brand purchased. If you are considering using complementary or alternative remedies &/or therapies please always discuss this with your liver doctor first.

Please see the link below to more information on The British Liver Trust website;

britishlivertrust.org.uk/li...

Warm wishes,

Rebecca

[slck]

Yes, Alpha Lipoic Acid, Selenium and Milk Thistle are all good to reduce anti oxidants and detoxify your liver; however, you need to do more. These 3 are a part of the vitamin/supplement regimen I refer to below, and that regimen can be found by reading Dr. Burton Berkson's book on Alpha Lipoic Acid, as well as information about using Low Dose Naltrexone as an important means to re-regulating your immune system in Elaine Moore's book on the Promise of Low Dose Naltrexone Therapy.

When I see posts for newly diagnosed people, I routinely reply citing the experience of my son, who although not having PBC, does have PSC (Primary Sclerosing Colangitis), a very similar liver condition that is also thought to be of an auto immune nature, as well as Ulcerative Colitis, another auto immune conditon. He has been successful in using diet, vitamins/supplements and most importantly Low Dose Naltrexone (LDN) to return to a normal condition. All his liver function values have returned to normal for about 1.5 years now, and all his inflammation markers are normal as well, and he is symptom free. Go the the LDN Foundation web site; read their materials and links to Dudley Delaney's web site and blog; and Google Dr. Burton Berkson and watch videos about him, particularly his 2009 presentation at a National Institute of Health conference, and also read his books on LDN, Alpha Lipoic Acid and B-Vitamins, (related diet strategies) and you will find his regimen of vitamin/supplements that improve your immune system, and the method of action of these items to help your body's immune system return to normal. Gluten and dairy free diet can help to reduce leaky gut and related intestinal irregularities that are typically at the root cause of many auto immune conditions. Some people also believe that a non-GMO diet will also help. Join the Yahoo LDN User Group and you will receive emails from LDN users and questions from inquirers about the application of this inexpensive and low risk/side effect drug in addressing a range of auto immune conditions and returning your body's immune system to normal or more normal condition. Many doctors do not know about LDN, or, since it is used "off label" for auto immune conditions, will not prescribe it, so do not be surprised if you get a negative reaction from your doctors. Find one who is LDN knowledgeable, or search the above resources about its availability not through your current doctor.

It takes a lot of time and effort to do the research and investigation, but with main stream medicine offering very little help to halt the progression of many these auto immune diseases, I believe the above items offer a reasonable and low risk strategy to address auto immune conditions. You can contact me if you have any questions, and I will try to point you in the direction of resources that will help to answer them.

Warren

[CoriCassandra in reply to slck]

Wow, that's a lot of information--I truly appreciate it, Warren and I will look into those books and sites. Bless your heart. Glad your son has kept his levels normal; can't believe it took over a year.

[Liver3]

U have a dear friend who has been battling AIH for several years on the same meds as you. No one seems to know how folks get it, thats the sad part. Eating fresh fruits and veggies seems to help. Best of luck were here if need. Myself I had blood transfusions hep c. Have done 2 treatments for Hep c 1st was horrible the latest I finished late Ict. Waiting for January for final updates. My liver was at level 2; 4 yrs ago now I have cirrhosis! Scary stuff, I haven't drank alcohol in 8 yrs. and was nevwr a heavy drinker. However,I have fatty liver also! I guess its life. We all have to fight for it!

[CoriCassandra]

Thanks for reaching out. I'm terribly sorry to hear about your situation. You are in my thoughts and prayers; I too was never a drinker/heavy drinker but yeah, I guess that's life Fruits and veggies, I'll keep that in mind as I'm fixated on bananas and mandarin oranges. I first had sjrogrens syndrome and found out the hard way when my potassium was dangerously low (1.5). And now I'm trying to battle this AIH. Let me know how your results go, I'm rootin for ya. Blessings to you.

[Hidden]

Hi Corricassandra, just came across your post.... Very interested to know if you started the Dr Berkson protocol- selenium, milk thistle, ALA?? Hoping you are feeling better and your lft's have improved...

[CoriCassandra in reply to Hidden]

Hi, Jacquie (sorry for the late response), no I haven't. I've wanted to but feel skeptical; my numbers have gone up and I blame it on the stress I've been going through. I am looking for a new liver doctor--someone who can actually LISTEN to me and have the TIME for me. Thanks for your kind words and hope you are doing well--thanks for reaching out.

[Solo34 in reply to CoriCassandra]

If you waste your time on a liver doctor, they will kill you. Selenium, alpha liopic acid and milk thistle have saved lives. I work in a hospital myself as a ceo.

[nylady1210 in reply to Solo34]

Can you tell me the amounts of each?

[Xena2017]

Hey Cori, sorry you're going through this. I went in with gallstones just after xmas and came out a month later with aih diagnosed and cirrhosis grade 6 (end stage liver disease) im on pred and aza etc and it's all so scary. I'm being very careful with my diet as don't want my gallbladder to flare up but it's a very lonely disease and the symptoms are chronic. I'm starting to learn the life of having an invisible illness. It's tough and I wish there was more support. Do you live in London? x

[Ahernj]

Hi Cori So sorry to hear you've recently been diagnosed with AIH. Its not an easy journey for sure. I too was diagnosed a year ago next month and Im still battling to get my levels down. I read 'Curing Courtney' too and enjoyed it very much. I would prefer to find alternative answers to all the toxic medications on offer. I havent been able to tolerate steroids, budesonide or the immuno suppressants without horrendous side effects as I have other auto immune issues that effect my stomach. I talked with my specialist about going on a LDN and Alpha Lipoic Acid trial. After a week my bloods had gone down 150 which was a first in several weeks. ( I was elated) However my specialist was not and is wanting my levels to come down alot quicker so wants me on the chemo drug azathiaprine. He said I havent got time to waste now. LDN is supposed to have very minimal side effects if any however I did experience a very pressured head and blood shot eyes, but the symptoms pass very quickly. I am due to go into hospital for antibody infusion and another infusion to get my levels down. My specialist advised not to take any suppements until levels were down, then he didnt mind me taking the likes of milk thistle etc . I wish you well Cori and hope they get you sorted soon. I'd love to be able to wave a magic want over all of the AIH sufferers and see them free of this dreadful disease, still I keep praying.

[TamaraCleverdon]

I know this is 2 years ago but I also struggled horribly with side affects and finally found this group. I would STRONGLY suggest to EVERYONE to at least consider the things written in this group. You don’t have to listen but at least consider it.

facebook.com/groups/Healthy...

[LauraIoana]

Hi Cori, hope you are ok. I am currently on suspicion of AIH and I came across the Berkson protocol.

Did you end up trying it?