Hello i have had some amazing feedback from you all on this video, its so lovely of you all! I have also had a lot of requests for another related video! please let me know what you would like me to talk about or cover :D xxx *hugs*
SophieMariaxx I was so healthy until my first surgery in 2013. Then it was all down hill. Severe RA, Avascular Necrosis and Fibromyalgia came out of nowhere. 3 surgeries in 5 years. 2013.2016.2017. Left ankle surgery. Right knee surgery. Right total hip replacement surgery. And now waiting for a right wrist surgery 😭. I am only 34 I don't even know how I got it. These symptoms were moving so fast for my body, deteriorating swelled up to the max from shoulders to the bottom of my feet. I just added you on SC and IG. Maybe I can share my stories too.
I also have Autoimmune Hepatitis. I've yet to me anyone with it either. I was diagnosed two years ago when I was 19. This video was so encouraging for me. I find it hard to relate and explain my situation to people. It's so nice to hear of someone with all the same symptoms and feelings as me. The jaundice, exhaustion, nausea, depression. Would love to see more videos!
hello lovely, I'm so pleased to hear u found this video encouraging! it can be quite tricky to explain to people cant it! i have had a lot of requests for more videos not this! Is there anything in particular u would like me to talk about??
its upsetting seeing so many people, so many young people, children affected by this. I hope everyone is doing well, we will get through this! Stay strong
I have auto immune liver disease. I have not met anybody with the same condition who I can relate to. Thankyou so much for sharing your story! I feel glad to know I am not the only one suffering 💕💕💕
It's associated with "Emf Sensitivity" which leads to other diseases like, autoimmune and cancer later. I found a way to help it and live a normal life again and beat it too. See my latest upload and how I do it, ALL FREE. It's a daily struggle, I understand it 100%!
Just wanted to say thank you for posting this video. I've been diagnosed with AiH for over 15 years now, like yourself since I was 18. I've tried various drugs (Budecinide and Tacrolimus) but the only ones that kept my liver from flaring was the first combo of prednisolone and Azathioprine. I'm worried about the long term affects of the steroids, but the day to day is fine. Interesting you talk about not being able to take medication as that's never been mentioned to me. Whilst avoiding alcohol is the way to go, I've always figured that the alcohol content in medication has been small enough not to worry about. One to check with my specialist. Anyway, I hope the new medication dosage worked for you. One thing the doctor might start doing are ultrasounds of your liver. Absolutely painless, just a little time consuming. But if your liver isn't scarred like mine, then your probably a few years away from that. All the best :)
I have an autoimmune hepatitis too , I was diagnosed when I was 15 . I’ve been taking prednisolone and azathioprine all my life , atm I’m 27 and still taking these steroid. I’m sick of it but that is what keeping me alive. 😅😔
Joyzaii Padee same I was diagnosed this year and I was 12 now 13 however I never had any symptoms and I took steroids and lots of medicine however none of it worked and I had acute liver failure and I had a transplant 6months ago (10th January) it was so traumatic🙁
Thank you Sophie for posting this video. I was diagnosed just recently and I am near 70 yrs old. Never heard of such a condition and quite taken back when I learned of it. I also have another autoimmune disease, Celiac disease, and think once you have one that predestines you to another. Boo. I appreciate your thoughts and hope all is going better for you.
Hi Soph, I don’t know if you still read these comments but I wanted to say thank you for making this video! I was just diagnosed with Autoimmune Hepatitis about a month ago (I’m 21). When I told my family (a lot of which are in the medical field) they acted like I was going to die which worried me but watching your has made me feel a lot more settled in my diagnosis. I’ve also suffered from severe chronic migraines since I was 16 so I sort of already know the pain of being in and out of doctors all the time as you would know! But can agree that getting a liver biopsy was one of the most traumatic things I’ve been through too! I hope you’re still going well and life is treating you kindly. ❤️ Larna
I was diagnosed with autoimmune hepatitis when I was 10. I had the same medication but a higher dose and got some side effects from it. Today I am 34 years old. My vitals are good and I'm off all medication since 2 years back.
Thank you so much for sharing your journey. My husband will be having a liver biopsy in a few days . His Dr belies he too has autoimmune hepatitis due to very high ALT on his lab test. He was having pre op labs for a scheduled surgery to remove a tumor from his kidney when they found that his liver enzymes were high. It’s a very scary and frustrating thing to go through especially not knowing much about it. I’ve been researching and found some people have stated they reversed the condition by going gluten and sugar free so we’re trying that. It’s only been 2 weeks but we’re hopeful! Please continue to share your journey and any helps you may have learned we would so appreciate it! I hope this message finds you healthy & happy! Blessings 💕
Oh you seem so lovely, i just cried watching this. I was diagnosed last year thankfully it was early and im really hoping it gets it under control. Thankyou for being so positive and lovely Xxx
Hey Sophie! Thank you for sharing your story. I was just recently diagnosed and I feel like no one my age really understands.. not to blame them because before I found out i had it i had no clue what it is. Anyways I dm’d you on instagram, just wondering if you’d be willing to talk to me some more about your experiences with AIH and some things i should prepare for. Also anyone if anyone else in the comments would like to share with me that’d be great! My instagram is jalenecuffee id love to hear from you!
So good you have spoken out about it thank you. I am 27 and I was diagnosed when I was 15. I refused to get the biopsy so they put me under to get it done which was fine. So glad your meds are working now. I'm on just azathiroprine which is working well. I worked full time and had a baby now I'm part time while my baby is young. I go by listening to my body and when it's tired i let it rest. Totally annoying about not being able to take meds when your sick I had a c section with my daughter and it was a hard recovery but so worth It. How bad is the tiredness right? Once again thanks for speaking out its good to have ppl to talk to when your going through something like this. Xxx
Thank you for making this vedio . I have autoimmune hepatitis too .... It is very terrible and painful , I'm so glad u came and tell others how this chronic illness feels u are truly my angel
I also have AiH. Since 4years.i have not taken any steroids. Past 7 months I'm using Homeopathy medicine. And I eat healthy food. I feel OK now. Sometimes I get tired quickly and little pain on my liver and lower limbs. But it's OK. I keep going.
I was diagnosed in December of 2019, I was 43. I had abnormal liver panels on and off for a few years, my doctor chalked it up to poor diet and being over weight. However, even after I lost over 20 lbs and was eating much healthier my numbers did not drop as much as they thought they would/should. She (my now former primary care doctor) then accused me of being a closet alcoholic 🤦🏻♀️ I insisted I wasn’t and told her I wanted to see a gastroenterologist, who was/is amazing!! After blood tests and a biopsy, in 3 months it seeing him not only did I have a diagnosis, we had a plan on how to treat me! Thank you for sharing your story ❤️
aww Soph I am so proud of everything you have accomplished you've had such a tough experience and I'm so glad you made this video, I can't even imagine what you went through and I now know more about this than I did before! I love you so much you're such a fighter❤️
Thanks for sharing your story. I am a Norwegian boy who was diagnosed with AIH in 2011, and i'm turning 20 in a month. Had incredibly high ALT/AST levels, and got put on 60mg of prednisolone each day for several months, which was literally hell. Got the condition under control after about a year. The first medications i got didn't work, so i quickly changed to different meds which usually only transplanted pantients get, but it worked. I would say my condition is in remission. Ive still been on a low dose of steriods, like 5mg ea day (sometimes ea other day) to prevent flare ups, as you mentioned in your video. So my liver has very rarely gotten inflammatory again. My doctors hope to wait out my puberty phase, and then try to lower down on meds, in hope of making the body accept the liver again. Here in Norway there is quite the drinking culture, so it's been kinda hard and frustrating to be a teen in this society, and have to explain why i can't drink to my friends and new people i meet... Anyways, i am an active teenager despite my condition, trying to eat healty, training regularly, doing martial arts etc, so besides taking medications and getting sick at rare occations, i don't really notice any side effects, which i'm glad for :)
I’m abigail and I was diagnosed with Auto immune liver hepatitis at the start of last year. I have to take prednisone and Azathioprine and loads more! I don’t feel sick so I always forget my meds and I don’t know how extreme my illness is but I don’t think it of that serious! I’ve had 2 operations and i also have alpha 1 antitripsin deficiency and a lung problem and a kidney problem and I also had parvovirus which yes is a virus from dogs! Don’t know how I got that but that’s ok! So yeah I know I have it put easy but it’s certainly hard! Thankyou for making this video!
I can't imagine how bad you felt being sick so often as I have a phobia of being sick too😩 I'm so sorry you had such a bad time when it all began! But like Becca I had never heard of this so thank you for making this! I never knew you had this, you are such a strong person Soph!! I am so proud of you for making this!❤️Love you lots xxx
CoraalFrancis It was honestly awful, i didnt have anxiety and panic attacks before this tbh :/ Its ok im out of those dark days now :) Thank you Coral, that means alot! ❤️ xxx
I have AIH. Diagnosed at 3 years old (REALLY young, ik) and I’m now 16. I’ve never met anyone else with AIH but I’ve met some ppl with other autoimmune diseases. Right now, the liver part isn’t so bad for me but it has caused inflammation in my spleen and varicose veins in my esophagus that had to get tied off. I’ve lived my entire life that I can remember with AIH so for me it’s just normal but it’s still hard to tell ppl abt it bc it’s an awkward thing to bring up
Dang. I have AIH - diagnosed at 17 after prom lol. In my mid twenties now - still on meds, and not a single person I know can relate to what I have - I’m a musician in LA and when I say I don’t drink I get the weirdest looks... thanks for this video. It truly is an invisible disease - but the side effects have consequences that can be very visible. Cheers for the video. I’ll was about to make one myself out of anger - but to see you chill and optimistic helped a lot. Btw I told the doc to bug off and I stopped taking aza too.
Really wonderful of you to share this Sophie! It's wonderful that you keep such a positive attitude. As someone with a rare autoimmune condition, it's great to hear someone else's story. I wouldn't wish it on anyone of course, it's just nice not to feel alone 😌
Thank you! I'm so sorry to hear you suffer with an auto immune disease too, whats your lovely :( I know what you much as much as i hate that you suffer, its nice to know we are not alone xxx
SophieMariaxx I've got vitiligo (a skin condition that takes pigment away completely). It's stress related, and coupled with a sleep disorder I had for 6 years, it's been a journey to try to get back to a healthy place. Even now, I'm a bit behind most people my age in several respects, but I'm just trying to focus on the happy moments of my unique life 😌 I'm so sorry you have to deal with so much. It seems unfair that it would happen to someone so lovely.
Oh bless you, I'm so sorry to hear that, sounds so hard to deal with! You sound so positive which is great and yes definitely focus on all the happy moments, because they out weigh the bad! 💜 Thank you lovely xxx
Amazing! You are such a brave woman. It's so nice to know that someone of a similar age to me is going through the exact same thing as me, and feels the same way. Love the video and can't wait to see more xxx
Thank you so much Sophie, as much as i hate that you suffer with it too, its also nice knowing that we can get through this together! Im always here if you need to talk :) Thank you for watching xxx
I have blood tests that MAY mean AIH and have to go see a specialist this month.... I’ve had lots of crazy symptoms but the worst at the moment is fatigue and pain... I’m very emotional and scared right now snd hope they figure out what’s wrong but I’m very lucky to have an awesome best friend to talk to ... I’m 44 btw. Thanks for sharing your story ❤️
Tracey, I'm sorry that you're so afraid. I don't know if you've gotten your results yet, but I'm sending out prayers to you for peace and courage. I just got my test results today that were positive for AIH, and am thrilled to have found this particular little family. I'm hoping to learn more about it and maybe even contribute some as I find out more from the specialists I'll be seeing. Be brave; seems we're all in this together. ❤
hi i have aih and pbc i am on 75mg azathioprine, manufacture by valeant ! i have no side effects as the other manufactures did give me aweful side effects !
This video is great! Ive had AIH for 6+ years now and this video makes me feel a bit happier knowing other people have it too. Especially when you get bad news from doctors.
I have autoimmune hepatitis, type one diabetes, and celiac so I understand your pain love and wish there was more feedback about autoimmune issues!! Stay strong everyone ❤️
I have autoimmune Hepatitis also I was diagnosed when I was 10 and I am know 15. When I was diagnosed I was put on prednisone and the side effects really got to me. I started getting tons of headaches I got acne pretty bad like I haven’t had clear skin sense and I gained A LOT of weight. Because I gained a lot of wait going back to school was hard I was made fun of a lot. I got called squirrel because my cheeks were chubby and I was picked on and talked about a lot but eventually I started getting better and I was taken off the steroid and I lost a little weight. I am doing a lot better now I have yet to have a normal liver level but I am working on it.
It was lovely and brave of you to share your story with us. I would've had no idea you suffered with such a difficult thing as that. I take daily medication to keep inflammation down so I don't develop a rheumatoid arthritis condition and I have to have regular blood tests so thats certainly something similar but not as crucial as your situation. But thanks for sharing ! :)
Thank you! Rheumatoid arthritis is horrible, hope your okay lovely :) Blood tests are such a pain aren't they :/ hope everything is going ok with you 💜 xx
Thank You for sharing your story. I am in the process of diagnosis for AIH. My blood work came back positive now just waiting to see the liver specialist and a biopsy. My biggest thing is being so fatigued and tired.
Hello lovely, glad it could be of help! Sorry to hear that you are currently being diagnosed. Don't let my biopsy experience put you off because i have heard a lot of people say that they didn't feel a thing and had no pain at all! If i could give you any advice what i have found really helpful after filming this video was that i joined the AIH group on Facebook and everybody is in the same boat and we all boost each other up and can give each other advice eat, so i would recommend joining that! Hope everything goes okay, the tiredness isn't great is it, but you will learn how your body copes and how much rest and sleep u need :) xxx
Hi I have autoimmune hepatitis and autoimmune hemolytic anaemia since I was 28 I am now 53 it has been up and down for so many years it has been good if I can say that to hear your experience as I have suffered all these symptoms myself I think you are an amazing person to speak out about it
Hi Gerri I'm still being diagnosed but it's theorized I have auto immune hepatitis. I was worried about life expectancy and getting to raise children but seeing 28- 53 is reassuring
I'm currently in the processes of getting a diagnosis. My doctor believes I also have AIH. My symptoms were similar to yours. I was completed exhausted and random low grade fevers that would last the night and go away. I originally thought I had Lyme disease even though I did not have any bite marks. I'm trying to educate as much as possible right now until I get my official results or next step in the plan, so thank you for your video
You always smile through everything very proud of you. Proves to others you can still lead a full and happy life even when you have health issues. Being positive and strong helps. Xxx
I relate so much to you in this video! I don't know if you're still active on here or looking through comments, but I also have AIH (and PBC) and I'd love to connect with someone else who has it! I was diagnosed at 24 (3 years ago - a month after getting married😔). I'm actually currently recovering from a liver biopsy and watching this video from my bed haha. Anyway, thank you so much for sharing your experience, and if you want to talk, I'm taratwirls on Instagram. P.s. I'm so surprised by the amount of same age ladies that have AIH in the comments! I wish you all strength 💛
Hi! I know its been a couple years and so in hope you have found others but ... If you haven't I have AIH and PBC too. I'm 40 but was diagnosed at 27 first. Reach out if you want to connect.
I have AIH too! I was diagnosed at age 16 and I am now 25. I actually just met people for the first time about a year ago with the disease. You should do some research on autoimmune hepatitis groups. I went to AIH convention and it was amazing for me. There were so many Dr’s there with so much info, but meeting people who struggle with the same issues I do made me feel not so alone. This disease sucks, but you learn to live your “normal”.
Recently I been looking more into Auto Immune Hepatitis. I am 14 years old turning 15 in a month. I have been diagnosed when I was the age of 7years old. I as well never met anyone with the same disease as I do since it affect people at a more older age. I have been able to be maintain on medication. Everyone has a unique story with auto immune and I’m glad you told it.
My grandson had been diagnosed at 7 years old also we been back and forth to doctor and he had 2 biopsy done since he was diagnosed he’s doing fine they have him on steroid medication only it seems to be working hopefully we have no problems he’s now 16 years old
Thank you for making this. I had no idea this was a thing so thank you for informing me of something i didnt know before. You're very strong to go through something like this! If you hadn't made this video, I wouldn't have known. You said your eyes look yellowish, but they dont look like that in your videos, I think your eyes are one of your best features! Also I know you said on twitter this video may affect you getting a job, how so? (if you dont mind me asking)
thank you Becca! Id say more so in person you would notice the yellow-ness of my eyes. aww Thank you so much lovely! :D basically having an auto immune disease goes down at 'underlined ill health' If your applying for a job they are more likely to pick the person with out this because they feel i would be off sick a lot basically. Altho tbh i haven't had *touch wood* a day off sick in over a year and a half now! :) Where i work atm they are pretty hard when it comes to sickness x
I am 47 years old and have elevated liver enzymes. I am having my liver biopsy done next week and I am very nervous. They think I may have autoimmune hepatitis. We have a lot in common. Good luck to you
Hey, I was diagnosed with autoimmune hepatitis about a year ago. EVERYTHING that you went through, I have had to go through and it has been the worst year of my life. I was diagnosed when I was 21. It took about 2 years to find that I had an autoimmune hepatitis. I started off having unbearably itchy skin and then I was given some cream to soothe that and nothing else was done. The itching went away for about 6 months and then it came back and i went to the doctor again and they sent me off to get some blood tests and then i started to get jaundice and then i went to ED. I spent 2 nights in hospital and they told me I had acute hepatitis and sent me home with some strong antibiotics. the symptoms went away for a little while and then came back so I went to the doctor and asked to be referred to a gastroenterologist which was the best decision!!. I was sent off for blood tests and other tests and then he put me on a very high dose of prednisolone and another medication called ursodeoxycholic which is an anti-inflammatory basically. I had another flare up and I was sent off for an emergency biopsy and then thats when I was put on azathioprine, I was on that for about 2 weeks and had to stop because every time I took it, I would have to run to the toilet because I thought I going to throw up. Im currently still on prednisolone but only on 5mg a day and am currently tapering off them and I'm also still taking ursodeoxycholic. I also became very depressed within this time period and I am still coming out of that dark place. I am so glad I came across this video because I know that I am not alone. I am so glad that I have someone to relate to, I did actually get a bit emotional because it just reminded me of all those terrible times I had to go through but this video is raw and it tells people exactly what happens.
You are not alone. I am also taking Ursodial and Prednisone and i was taking Azathioprine but only for 3 weeks because the same thing happend I felt so nauesea and felt itchy again so my doctor change the medicine to Mercapoturine. I try to stay positive sometimnes I know its hard becasue you wonder what will happend but put your trust in God. He has the control.
Hello i have Autoimmune hepatitis as well i was diagnosed when i was 4 and i am now 16, and with this it is hard because u get so scared from not having an immune system and being able to get sick easly. After the AIH i then got almost every other immune disease except lupis but all i tell myself is that if i didnt get this then someone else would have and i didnt want that its better being me then someone else and im fine with it being me even if it is a struggle. So no your not alone it is a rare thing but we are out there in the world and we are all here to support u and everyone else 💞💞💞
I was diagnosed with AIH and lupus at the age of 34 it sucks being sick all the time..I’ve tried so many meds and so far nothing is working..I recently had a second biopsy which by the way I won’t do again, I’m in the process of tying a chemo infusion..I hope it works...thank you for your video and God bless
Hello, my name is Leslie and I have autoimmune hepatitis. And honestly EVERYTHING you said is relatable. I got diagnosed at the age of 8 I’m going to be 19 in July.
I have autoimmune hepatitis and hashimoto and I was diagnosed when I was 22 years old, I probably had it for a while. I was put on 45mg of steriods and decreased to 5mg before they stopped it. Thank you for sharing your story
@@rhitrill1819 from 2012 to 2015. But they stopped it because my liver function was normal for after the test. But a month after that my ALT and AST went up again. However after 2015 I didn't go back to asteroids or any treatment and I am still not taking any meds for AIH. my ALT and AST are under 100 so I am okay with that. But I am doing a lot of other treatments such as gut health and nutrient deficiency treatments and it seems like they have impact on my liver enzymes and overall wellbeing.
@@NN-hl6nt ahh okay, so there is possibility to come off it after a few years, providing tests are normal! That’s positive to hear! I’m currently looking into improving my gut health also, as I have Ankylosing Spondylitis as well as AIH..really don’t want to be on meds indefinitely. Happy to hear all is going well with your health, wishing you all the best ❤️
@@rhitrill1819 Oh for sure. As far as I know no one can stay on such powerful meds for ever. In my 10 years of experience with this disease I have learnt that things like, bad diet, and stress can cause autoimmune disease to become active. I definitely feel so much better off gluten, dairy, soy, fried and sugary food. Try to eat healthy food specially anti-inflammatory food and make sure you get good nutrition. For me this helped a lot. Even though my autoimmune is not in remission it is going down and I am very hopeful
I also have autoimmune hepatitis I was diagnosed this year, I am 22. My only symptoms were severe itching and a few weeks later my skin and eyes were yellow. I was seen by multiple different doctors and no one knew what it was. Finally after three months of only being monitored I was seen by a Hepatologist/Organ Transplant specialist. I was in the hospital for four days were I too had a liver biopsy which confirmed it was Autoimmune. I was put on Prednisone as well and thankfully I have been able to taper off the dose without adding any immunosuppressive drugs. My liver specialist believes this disease was triggered from me taking antibiotics for acne just a few months prior to the symptoms, with the suspicion I am the ONLY documented case of AIH being caused from this specific medication. Living with the disease is very rough but seeing all of your comments really helped me feel less alone.
Hi there, I did my physicals 5 years ago and all the results were normals except for alt and ast. I didn't pay attention to the results. I did my physicals recently and both alt and ast levels are still high, but alt is lower than the last time. I had no symptoms in the last five years, maybe I got sick once due to the change in the weather. My ultrasound report looks normal. The only liver test that came out positive was anti body smooth muscles, which I believe has to do with autoimmune hepatitis. I am yet to see my doctor. I am curious why i didn't have any symptoms in the last 5 years.
I have autoimmune hepatitis and its sooo nice to hear another person going through similar things. Its weird as i also have a sickness phobia massively.
Went to the doctors this February after a crazy cold. Routine blood test found raised ALT and presence of smooth muscle antibodies blah blah. This lasted 6 months. I've been given a diagnosis of probable AIH. Had a fibrosis scan and the liver stiffness looks ok (best call I've ever had). 2 weeks ago my ALT has lowered with no medication. I sit in wait fearing every blood test. One more spike in ALT and it's biopsy time. Life changing stuff. Glad to see your doing well with it! Your video really helped ease some nerves! Thanks.
Hey aww i am so glad to hear my video has eased some of your nerves. Diagnosis and the beginning is always the hardest time! Things will only get better, stay strong my lovely! Its great that your Alt has lowered with no medication, thats brilliant news!!! Hearing your liver stiffness is good is the best news isn't it 😀😂 Altho i didn't have a good experience with the biopsy i mean everything went as it should, i just found it very painful! But i have spoken to a few people now and they say they had no pain what so ever with the biopsy so i think it depends on the person! Your aloud to have someone in with u to hold your hand, and i took my iPod and listened to music to take my mind off it! Hope everything goes okay xx
I'm 15 and I got diagnosed with autoimmune too. I've been having it for a year. I feel terrible some days and other days were good. I have no medicine for it.
I might have Autoimmune Hepatitis. I thought I might be lactose intolerant and I got bloodwork done, I forgot what it was, but some chemical level was higher than normal in my blood. I already have one autoimmune disease, which is type one diabetes. The doctors thought it might have been caused because I had a high blood sugar that day, so I had to go back for bloodwork and fast before it. When they tested my blood again I also got an ultra sound in which they told me my spleen was long. I was like, “Okay, but what does that mean?” And a few days later they called me and my parents to the hospital and told me I needed MORE blood drawn, and if the results came back positive, a liver biopsy. Honestly, I am really scared that having aih will make my life harder than it already is, and the liver biopsy scares me because one of my phobias is being stabbed in the stomach. This video helped me but honestly I am still terrified. Is it really that bad and I am just overreacting?
I have my first liver consult the doctor at the clinic thinks it is AIH after my blood tests and ultrasound! This video helped me feel a bit more at ease. I went in thinking I had a bad flu.. We will see!
Hi there- I have a very rare autoimmune disease as well... not the same as yours however still pretty rare. I believe there are only about 200 cases worldwide. I commend you for having the courage to come on her and discuss it. ❤️
Entocort is a steroid that goes on the liver instead of the whole body, like prednisolon. I gained very much waight from prednisolon and was glad I could change over to Entocort and not have as much side effects and cramps and water and fat gain. Just wish I knew about it earlier. Ask your doctor about checking it out. My doctor ordered it from Sweden. Just a tip I think can help. I also recovered from A I H after akute liver failure, coma, shiroses and all even when I couldn't get a new liver because of I was an addict back then, and 19 years old dying. Against all ods my 5% liver function got better and better and functioning with normal liver values now and for many years. I stopped using imurelle and steroids and it's fine. Struggle with chronic fatigue.. Sucks, don't know if it is because of something else or what, but am glad to be alive. Take care :-)
I believe I have auto immune hepatitis for a few years. It flares up when I take the pill and get pregnant. If I stop taking milk thistle and curcumin I become jaundice with yellow eyes extreme nausea and diarrhoea. Before you got diagnosed did you have trouble eating fats (even healthy ones) I also can’t tolerate sugar or any alcohol (even small amount In medicines) Does anything sounds like I have this? I also have celiac disease, hashimotos, adrenal insufficiency. So I am no stranger to autoimmune diseases. Thanks for your video.
It's associated with "Emf Sensitivity" which leads to other diseases like, autoimmune and cancer later. I found a way to help it and live a normal life again and beat it too. See my latest upload and how I do it, ALL FREE. It's a daily struggle, I understand it 100%!
Thank you for Sharing I Have autoimmune hepatitis B i thought I was alone I was diagnosed a year ago I’m 11 years old I’m taking steriods and it’s a struggle cause I’m getting a lot of hunger I can’t stop eating
recovering from a liver biopsy, testing for AIH. i was diagnosed with Stills Disease which is another autoimmune disease so i’m really hoping I don’t have AIH!!!
Anybody who does have this disease I'd greatly appreciate someone can give me some advice I'm still in the process of being diagnosed with a few autoimmune diseases one of them being autoimmune hepatitis the scary thing is I cannot see a rheumatologist because they will not accept my insurance and the few that will it's over a year long way and I just took a turn for the worst my liver shutting down I'm only 24 it already male shut my kidneys down to before but they caught it in time but my doctor said that there isn't much he can do until I see The Specialist and that I'm high risk for my liver shutting down entirely he just said to be very careful and go to the hospital if something's not right which it feels like that really bad because the pain is getting worse and worse my eyes are like turning yellow and I went from just supposedly fatty liver to full services in less than a month and they still can't do nothing about it so if anybody has any advice on if I should go to the hospital or any methods I should take until I can hopefully see a specialist any advice would be greatly appreciated
corina laney this sounds awful and so sad they can’t do anything for you. I’m no expert but I’d go to the hospital or something and make sure they do something about it!! X
@@SophieMariaxx yeah it's not very fun for sure I'm sure you can relate I told my sister cuz it's the only family I have kind of nearby just be on alert cuz I told her that if I get out of my stubbornness and go to the hospital because I've had too many bad experiences there and I'll go but only if I get to the point I have no other option thank you for the advice though that's very kind of you
I just found out today my baby sister has autoimmune hepatitis and is in the hospital.And I am really worried about her,and want to help her but what should I do.
Hi I'm having problems with liver and Dr. said that I have AIH. I'm going to have an ultrasound done in a week an half to make sure that I have AIH.. plus I have other problem with my liver my Dr is gonna find out with the Ultrasound too and I need a biopsy but they can't do that now because I am on blood thinner and my Cardiologist can't take me out of it because is to risky. Just praying 😐😐
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Liver biopsy What it is: well for me they put me to sleep and go between I think 7th and 8th rib (correct me if I am wrong) stick in a big needle in big enough to suck out a small piece of liver and doctors test it Feeling: my first time I felt nauseous sad a lot of panic and violated. It sucked even now when I get tested it sucks i got anxiety depressed and ugh it’s just horrible
hi we are in 2019 and i was diagnosed with the same decease at 18 too i'm now 19 i hope you are well now :) i would love to talk about this with you ... i just started my treatment and i have been really depresed and i feel like talking to someone else with the same deacease would be good for me and you maybe :)
I have also autoimmune hepatitis but I recognised at early statge so I get well in 6 months . I take 4 -4 tab of 8mg = 32mg + 32mg of Methylprednisolone only on Saturday and Sunday on 1st month and next month i take 3-3 tab and next month 2-2 tab and then stop taking these medicines. During medication i never eat sugar , milk and citrus fruit . I also take pre and pro biotics for healthy stomach. After diagnosis i take herbal liver tonic 3 months . And now I am fit and fine. I thought which is most helpful for me in diagnoses is my sweeming in very cold water . Which recover me very very fast . I perday sweem 1 hour in sweeming pool in coldest winter.
Hello lovely! Of course I can. It’s quite a long day but you will be in good care. The actual procedure itself is over in minutes. You will feel a slight sting when the anesthetic goes in, and then they will make the tiniest cut which u won’t feel and take the biopsy which again u don’t feel. The painful part (everybody is different, not in all cases) is afterwards I had a shooting pain in my right shoulder but they will give u pain relief and all will be fine. U just have to lay on ur right side for 3 hours to make sure ur blood clots. And after tht u are free to go ☺️ hope it goes well lovely!! There’s a AIH Facebook group which I definately recommend joining as we all have it and it makes u feel less alone :) x
Ellen L hello lovely, yes ofc. the actually biopsy itself is over in about 2mins! U will feel a slight sting when they inject the anaesthetic but after that u don’t feel anything. Some people experience pain afterwards and some people don’t. personally I did but the nurses are brilliant and u will get pain relief and they will keep checking up on you! so honestly it’s nothing to worry about atall u will be fine :) x
Has anyone's Dr mentioned diet, specifically sugar and carbs that are processed into sugar? Fructose will cause anxiety, depression and seriously hurt the liver. You all are too young for all these meds. Prednisone killed my sister after using several years. Please do some research. Remember, just because a Dr prescribes it doesn't mean you should take it. Prayers to you all
100% agree. Western medicine is not the final choice. Research Ayurvedic medicine, turmeric, vegan diet, meditation, Wim Hoff method, energy healers. The mind can heal the body. If you're mentally anxious and stressed it won't help you. Praying for all of you lovely people! And praying that science and research will help end suffering soon!
Hiya, I'm newly diagnosed with an autoimmune bowel disease called ulcerative colitis. I was in hospital for 8 days. So far I haven't been given much support on my diagnosis, I understand the pressure with have in NHS. So this isn't me slating them off and I know they're trying their best. I'm waiting for an appointment with the access clinic within the next 4 weeks. I'm around Worcestershire, UK. But did/does anyone struggle understanding and accepting their diagnosis? Can anyone recommend where I can find support and help If there is someone suffering with an autoimmune disease. Trying to process my diagnosis, I'm finding it very overwhelming. So It be nice to know that their is someone going through the same experience as I am or have experienced this. If anyone can get back to me, or recommend me any advice or information. I would really appreciate it. Many Thanks, Paige x
hi! remember i have comment 2 weeks ago and saying im going for a biopsy? unfortunately, i have diagnosed Autoimmune hepatitis last week. i tried to find information on the internet, it all tells me this disease won't cured but would need to keep taking medication for my whole life. so doesnt sounds too bad tho... After searching some post on facebook, i have found out, some paitent even they were on Prednisone, azathioprine for many years, they're liver level can still go up and down. some even still ended up at hospital and cirrhosis. So basically , this is an unpredictable disease, whenever your liver levels goes high, you need to start having high dose Prednisone again? so it just a cycle? Can anyone please tell me the truth, what will my life be like in the next 10-20 years? will i be suffer from the side effects ??... thanks alot...!
Hello, I am not sure if this is to late, but autoimmune hepatitis is not curable, but with the right medications it can be managed. Steroids are initial treatment, typically prednisone, which does have quite a few side effects. Every one is different in how they respond to medication, and if you are experiencing severe side effects talk to your doctors because there are second line treatments available. The steroids bring the inflammation down, working along side an immune suppressant. Immune suppressants by themselves do not bring inflammation down but paired with steroids can help bring it down faster. Azathioprine is the standard immune suppressant prescribed, most patients can tolerate it and it works well as a maintenance medication(medication that will control your immune system from becoming over active again). The point of treatment is to get your flare up under control, and enter remission, the maintenance medication is suppose to prevent another flare up from happening. So yes leaving your disease alone will prompt a vicious cycle, and even sometimes medications won't work, but that is considered rare. Like I said earlier, there are second line treatments available, and research is in motion to try to find medications that all AIH patients will respond too, or at least a higher percentage. If your medications are working, you shouldn't worry about relapsing frequently, (although it could potentially happen). Don't worry too much!
I had AIH in which turned into cirrhosis of the liver. I was diagnosed in my early 20s and I'm in my late 30s now. I was taking prednisone and Azathioprine. Now i only take Azathioprine. Thank god Prednisone sucks all though i had to take it. Still wish it wasn't me. I have minimal to no symptoms now or I'm just used to it at this point but I wish It was a dream.
I have it to i am 14 now and last week they diagnosed me i have one question what can and can’t i eat because my mom dus not let me eat like a lot and i am sik of it😂 i love chocolat and she doesn’t let me eat it😭😤 so do you have any suggestions for things i can’t eat
Kiona Mostaert I’ve been researching this because my husbands dr believes he has aih. Liver biopsy will be done in a few days. All that I’ve learned seems to lead to a gluten free and sugar free diet helps tremendously! A little honey for sugar substitute not artificial sugar. We’re trying this, it’s only been about 2 weeks so far. I hope this helps you! Blessings 🙏🏼🙌🏼
Whole food plant based diet. Aka vegan has been proven to reverse other diseases. It won't hurt to try it. Check out nutritionfacts.org. dr.greger is my hero!
Naturally Immaculate hey lovely, yes I find when my liver has a flare up my skin, mainly my legs and arms become really itchy it’s horrible! Was always after washing. I found my skin wasnt as itchy if I soaked in the bath, whilst being in the shower it was worse. also when u dry ur body after washing to pat ur body dry with the towel rather than rubbing it dry also helps. And non perfumed body lotion is better. Do u have any tips ?? X
SophieMariaxx omg! finally someone who understands... I get itching all over my body. I am currently suffering right now and they have given me gabapentin for the pruitus and it doesnt help. A bath helps me too, but I find it hard to sleep and do anything 😭🥺 I just do not know what to do. Its progressively gotten worse and started lasting longer. I also get cold sweats which is frustrating, during a flare up how do you maintain your normal life?
Naturally Immaculate sounds horrible. it’s hard isn’t it because ur body is so itchy and u make it red and scratching only makes it worse. tbf I not sure what the best thing is, loose clothing is more comfortable. During flare ups if u can, rest and make sure u are getting enough sleep and try to still have fun and enjoy life. try to keep postitive! Things will get better! Christmas is coming up!! 😆😆
