Autoimmune hepatitis disease
Posted , 63 users are following.
Has anybody else got this condition that is willing to discuss their treatment and how they are coping with this disease?
I have been living with AIH for 14 years, first diagnosed when i was 14 years old. Luckily I am fairly stable with the odd flare up now and again. I am being looked after by the Queen Elizabeth Hospital in Bham and they are brilliant. Currently im on 50mg of Azathioprine a day and its brilliant with no side effects. I have been on Prednisalone in the past and ive not got on well with it. My doc keeps mentioning the possibility of me having to go back on it in the future but I dont like the side effects.
I am a busy professional who has no time to be poorly, so fingers crossed my Azathioprine continues to do its job!!
2 likes, 120 replies
alex2000 cathy67411
Posted
Hi Cathy, and everyone, have to say its great to find this forum. I just got diagnosed with AIH a couple of days ago and am freaking out quite a bit. I just don't know what this will mean for my life, my work, my future. There is a lot of scary information on the internet, but none of it seems very specific. Side effects can range from mild to severe, but no way of know what you will get, effectiveness also seems as broad. It all very disenheartening. Its actually nice to read that you are all experiencing different results. Seems like it effects everyone differently.
Bit of background - I'm a 42yr male in Syd. I have had raised liver enzymes (not huge, around 70-90 ALT/AST) for the last two years. I have had blood tests every 3 months, ultrasounds, MRI's you name it. Nothing showed up apart from my liver being in distress. Not fatty liver or cirrohis. I even had blood tests for Auotoimmune disease three times, but each time came back negative! I've had no symtoms of AIH either. So last week my Dr ordered a biopsy and the results showed AIH. Glad to know what it is, but don't know why none of the other tests showed anything?
My Dr put me on Budesonide (9mg daily) to start with, and will go onto the immune supressors early next year. Panicking now as I don't know what to expect. Will I put on weight from the steroids? How fatigued will I get? Can I still hold down a fulltime job? I surf most mornings before work, can I still do this? The Dr was quite vague, so not sure if I'm heading towards lying around on the couch all day not being able to take care of teh kids, or just some mild discomfort for teh next couple of years. Also, will I be on the meds for the rest of my life?
Sorry, so many questions. I've written them down to ask on my next visit. Are there any support groups in Sydney? Welcome any help or advice. Thanks!
margie321 alex2000
Posted
Hi Alex ; you don't have any other symptoms besides your blood test liver enzymes being just slightly elevated ? If that's the case , I would say you have a mild case and you will be fine .. it's something to watch and keep an eye on, but don't freak out steroids will help the inflammation of the liver .. I hate them to but it's a necessary evil .. I was put on prednisone not familiar with budisonide. You will experience increased appetite along with extreme energy, hard to sleep (get a sleeping pill) .. it's coming down from them is the problem, ween off slowly, depends on how long your on them to.. I was never on them very long, my enzymes spike (3500 ish) and then slowly came down to normal never lingering at any given point .. as you noticed , everyone is different .. you will have a normal life .. continue to surf and work .. this is just a little hiccup on our life journey .. I'm not an expert , but I dove in like you , researching and reading everything and everyone's discussion .. and because its so different for everyone is why it's hard for your doctor to give you black and white answers .. this is actually rare so I'm told . But it seems like auto immune diseases are all around me .. product of our environment ? Maybe .. I am only on a very low dose of immuran , I refuse to be on anymore , and I've been fine .. enzymes normal , will be a year in February since my last "flareup" .. yes , unless they come up with a cure, or alternative treatment , most likely you will be on immune suppressor for the rest of your life . I don't notice any side effects accept an occasional mild stomach ache that doesn't last long ..
Tlctisme alex2000
Posted
Hi Alex,
Like Margie said, I agree you have a mild case. I was just diagnosed 3 months ago and had very high enzymes with no other symptoms except tired, and not being hungry, etc. I was on prednisone and have been decreasing my dose every three weeks since August. I am down to 5 mg and never took Immuran at all. I hopefully will be off in 5 weeks, as next week will go every other day. I feel fine, studied a lot in the beggining, reading everything I could.
it seemed people who were beating this, based on our food. Now, I eat only good foods, I lost 20 pounds on this steroid which they say is not possible.. I have always had a weight problem and this is a miracle for me. But I'm trying very hard. No sugar, no wheat, No booze... I eat anti inflammatory foods,, turmeric, banana smoothie every day, cook with it and garlic, avocados, Apple, carrots, protein,everyday and lots of greens and I have had no red meat or soda anymore, I feel great and although my DR doesn't think the food has Much to do, he said whatever I'm doing keep doing it, because he can't believe how I've had no physical effects in prednisone and how my numbers went down so quickly. YES, everyone's different.
3 months ago, I thought my life was over, I couldn't work, be around sick people, scared to death, thoughts everything would change, but now I feel confident, I will have a life. You will be fine, take care of yourself, get lots of sleep, use this forum. They helped me so much to know we're not alone in this, It's rare they say, yet I believe too it's our environment with Immune disease on the rise. I also have hashimtots thyroid like many people and it's more common to get AIH. You will be fine,, keep talking,studying, reading and everything will be fine, It gets easier.. Think positive, a good attitude, low stress, good eating, exercise, do what you normally do, gratitude and it won't seem so bad in a few months, Trust me, I was a mess, scared too. Good Luck and keep talking to us,, we're here for you!!
royalty Tlctisme
Posted
You are doing great, I too have auto hep for last nine years I'm not doing so well I have underactive thyroid transverse mylitis n now post viral fatigue syndrome I am 59 years old and had to give my job up five months ago due to the post viral fatigue I'm very positive person I'm on imuran 75 mg prednisolone 5 mg are you in the uk xx
alex2000 royalty
Posted
Hi Margie, Terri, & royalty, thank you so much. Nice just to talk to people who understand. Especially who are going through the same expereince. I feel a bit better avbout it since last week. But still unsure about the side effects. I'm taking calcium supliments with the steroids. I hear that helps counter the bad ones.
I agree about the diet. My dr also said it has no bearing on the disease but I can't see it couldn't help. My wife found an autoimmune diet that we're going to try. It looks like a varient on a paleo diet. Much like what you described Terri. Hopefully it helps.
I also have Vitiligo - another autoimmune disease. The good news is they think by helping my liver it shoudl also help the Vitiligo. Fingers crossed. Appreciate all your kind words. Thank you.
royalty alex2000
Posted
Hi Alex it's been a while how are you doing with your AIH
lisa19820 cathy67411
Posted
Hi everyone
I just learn also I have this , my doc says it
Came from my psoriasis. I do also have thyroid problem too ..I also have hardening on my artyies
In my brain .. I'm sure all related I'm 52 not sure on what next .. I don't want to start on any steroids
Rather try something more natural
Any suggestions?? Would appreciate
swapnil_95448 cathy67411
Posted
can someone please explain how many years can you live?
is it hard to cure?
please explain is there any treatment for this?
amy_57955 swapnil_95448
Posted
nidia53744 amy_57955
Posted
Thank you for that. I have been worried sick. I was just diagnosed and been a mess. On Imuran and 30 mg of prednisone.. not so easy but I can't give up. I am 60 and just had my first granddaughter and want to watch her grow up 😢 I feel my depression is keeping me from enjoying life. I pray constantly. How long did it take to get enzymes to normal? Mine are still high at 1 month. But much lower then what I started with.
jeni17 cathy67411
Posted
Hi Cathy!
So please to have found this forum nd read through everyone's experiences, medications and Dr's recommendations.
Simple trip to the Dr's for the pill for my acne turned into a diagnosis of AIH after LFTS and a biopsy...(2014) was put on 40mg prednicolone monitored and reduced but no AZA until getting back from getting married abroad (due to potential side affects with sun). I finally was put on AZA 50mg and was ill... turned out I was also pregnant! So not sure if it was a mixture of both or either etc. LFT's all ok and had to go back on 40mg of predicted after the birth because ALT went through the roof!
After weekly bloods and reducing I'm now back to 50mg AZA and 10mg predicted. I feel sharp pains occasionally in my side and occasionally have to stop whatever I'm doing but then that's it. I can be pretty cranky, stressed and tired but put this down to being a new mum when in fact it could potentially be linked to meds! I hate the uncertainty it all brings but I stay positive about AIH and in fact act like there's nothing wrong with me (just get on with everything).
I actually stumbled across this thread trying to research if AIH will affect a visa application to Austrailia! And notice others in the group from Oz so going to see if they can shed some light.
Apologises for long message - I am just wondering if you are aware of the UK research being conducted with Newcastle University? My consultant at Salisbury hospital put me touch with them as you and everything in the thread havr highlighted it's rare and unknown why AIH occurs... they are trying to figure this out. Only completed 1 questionnaire so far and was all about mood. I actually was told it was 1 of 3 things (not helpful) 1. Hereditary 2. Environmental factor 3. Unfortunate (haha... so literally useless info!).
I was recommended a book "reverse autoimmune with paleo" I attempted this but was hard to actually live life and be that strict so I am not on Slimming worl just to enable healthy eating and maintain a stable healthy diet in a hope that I can stay ahead of the disease and not get worse.
I look forward to hearing from anyone and their stories/journey.
Jen
amy_57955 cathy67411
Posted
Shaywiz cathy67411
Posted
My mother was diagnosed over 7 years ago with AIH, had the biopsy and regularly sees her Doc (every 2 months). I am not sure of the exact dose, but she has been taking AZA for years. The past 7 weeks have been hell and she has been in and out of every hospital in the state in VA? All tests are coming back normal, except her sodium levels are extremely low and her gallbladder is in a weird place? Her pain is in her upper stomach and radiates to her back? She is now back in the hospital and I am out of vacation at work to help her 3 states away? A new Doc is telling her that the AZA could be causing the pain? I look it up and it is a side effect and wandering why no one looked at her medicine sooner? We both have hasimotos (both of us developed in our 30s). I just want to figure out if anyone has been on AZA for years then developed this reaction to it? I have felt for years our food is poisioning us! Also, everyone talks about how rare these and this disease is... her neighbor of 30+ years has the same? We have had soil and water tested, it all comes back normal? I had severe swelling in my knees and had to move when I was fired for another job... guess what no more swelling? No more prednisone for me? Are we really poisoning ourselves, even our land? Anyone in remote areas having neighbors effected by similar autoimmune diseases? I give up on docs they just run tests and don't want to be liable for actually practicing medicine anymore and just throw pills to solve issues?
helga01687 cathy67411
Posted
Cathy, yes, I too have IAH since 2014. I am taking both Azathioprine 50mg and Azithromycin 250Mg with no problems. I follow Blood Type Diet. I follow Dr. Peter J. D'Adamo Blood Type Diet, avoiding both wheat n corn products, all pork, pasta n potatoes. My body is happy. I am now adding to that a Paleo recipe for an organ soup. The only fast-food I eat is pizza with my grandson. No soda pop. I have no pain, I am 73yrs young. I exercise 3x wk. I'll keep you posted on the Organ Soup.
michael16642 cathy67411
Posted
Hi Cathy, I was diagnosed in February 2011. Started on Decreasing dose of prednisone for about 4 months and next started on Azathioprine 50mg a day and continues at that dose up until now. I feel great with not limitations. I lead a very active life and have no intentions of slowing down. I concern however, is that I went to a new dentist recently and for the first time have been told that I need some immediate attention, root planing to be exact, that my previous dentist did not see as an immediate threat. Therefore I am questioning the new dentist's conclusions and wondering if perhaps they are acting a little too hasty. I am a semi-retired Pharmacist and have only recently been made aware of any connection between AIH and dental issues. Can you or anyone else share any issues pertaining to dental issues relative to AIH.