hi everyone. a little bit of a different video, but i hope you learned something valuable. don't hesitate to ask questions if you ever need to! xoxo Casey
hello, thank you for sharing your experience! I was diagnosed in 2016 shortly after graduating high school its honestly been a roller coaster especially with the medicine that gets prescribed and being very young it can hard on somedays. So I decided to come on UA-cam for other ppl like me who's going through the same..after watching this I will find some support groups too.
Thank you for sharing this video, especially because only recently there started to be more videos and researches about autoimmune diseases. When I was diagnosed with graves disease 6 years ago which led to autoimmune hepatitis, there wasn't any information about it. A negative side of autoimmune diseases is when you are a woman and want to get pregnant. It can be very tricky. Luckily due to my miscarriages, I went on a lot of research recently before going IVF. I found out a lot of things that conventional medicine don't even say it. First of all, when you're dignosed with an autoimmune disease, you should start an anti-inflamory diet: eat lots of vegetables, reduce sugar, carbs and even fruit intake (because of its sugar, fructose), cut off gluten, dairy or lactose. Add supplements such as inositol with all complex vitamin B, flaxseed oil, vitamin D, selenium, lactobacillus and milk thistle, all natural supplements that end up playing an important role on autoimmune diseases, because they reestablish insulin levels in the body. It's very common on autoimmune diseases to suffer from insulin resistance. Also it's important to understand that anyone diagnosed with autoimmune disease has a heavy metal inflammation, hence it's important to use natural skin products that avoid parfum and other toxic ingredients. It's also important to read the ingredients on food and supplements and avoid ingredients with sugar such as maltodextrin. I'm following all of this that I just described and I'm currently pregnant of 11 weeks, so now I'm crossing my fingers that by keeping this routine my pregnancy will come to a full healthy term. Best luck to anyone diagnosed with an autoimmune disease ❤
Hi there, I just want to briefly tell u about my experience. In 1985 I got extremely sick and yellow for months, and they just called it non-A, non-B hepatitis. After 10 years they tested my blood again, a process that took 6 weeks of different tests and found it was autoimmune. So it was prednisone and azathioprine and then only azathioprine . I haven’t been able to get off it without immediately going out of remission. So I try to be as healthy as I can, and let my body sort it all out; how to have a healthy immune system while it wants to attack me…so now I’m 79 and want u to know I take my meds every day, (they are short-acting so u don’t want to skip days if possible. ) And they really are doing a nice job keeping me going 😊
hi girl! i just found your vid and i was recently diagnosed with the same thing. so glad i found someone who's going through the same thing, esp someone around my age too.
Thank you for sharing your story. It's cool that you don't exhibit or describe any fear you're experiencing. You're more matter-of-fact instead of describing how you felt emotionally about everything. That has been helpful. 👍
I saw your video & appreciate you sharing your experience! I have it too, was diagnosed in 2016 by liver biopsy & was at Stage 2. Had another biopsy in 2021, still stage 2. Was told I had a mild case of AIH. I feel like I’ve progressed to stage 3 now but don’t want to have another biopsy right now. My Dr put me on Prednisone, which I can honestly say has been a long term nightmare ever since I took it for 3 yrs! Tried Azathioprine but couldn’t take it. Tried Budesonide but liver enzymes went up. Was referred to Duke Medical Center in Durham, NC (I live in NC) to see a Hepatologist who specializes in AIH. She weaned me off the Prednisone I had taken for 3 yrs & put me on Cellcept which has worked good. The side effects of being on Prednisone has caused me to have Cataracts on both eyes. I had to have cataract surgery. Another side effect is it weakens your bones, which caused me to have Osteoporosis. From that I’ve had 12 Compression Fractures in my spine in the past 3 yrs. Spinal fractures are very debilitating & now I have Forward Head Posture (Kyphosis) from the 12 fractures. Last side effect I had from Prednisone was, it made me lose just about all my muscle mass! Just wanted to tell you my experience, you may not have these but a lot of people do. I hope I’m not discouraging you but I sure wish someone had told me what can happen to your body if you stay on Prednisone for a while. My Dr never told me any of this! Maybe your Hepatologist can find another medication to put you on besides Prednisone. I would probably still be on it if I hadn’t of gone to Duke. They are so much more up to date about AIH treatments. Just a note: You may want to check out Dr Craig Lammert, a Dr who treats AIH. He has a channel here on utube. He has a lot of experts to talk on his channel about AIH. I’ll find it & send it to you. Best of luck!!❤❤
Thank you for making this video 🥺❤️ I got diagnosed recently and it sounds similar to your story (down to the blood transfusions lol) so I feel your pain. My liver enzymes were 1500 at diagnosis and my biopsy results were inconclusive. It’s crazy looking back at how shitty I felt and how slow they were to react lmao. Its been 6 weeks now and I have this weird constant pain in my side where my liver is but idk if that’s normal lmaooooooo. The doctors in the UK suck (one of my doctors called me a drama queen 🙃) but I am starting Azathioprine so hopefully this nightmare will be over soon 🥲 sorry to rant but it feels good to meet someone with a similar condition. I’m sending you so much love and warmth and I hope you’re doing so much better now. Thank you for this video again ❤️
Hey I hope you are doing well! Thanks for sharing your story. I just got diagnosed with autoimmune hepatitis. It’s Been a super long road for me, took them 6 and 1/2 months to get the diagnosis and have been extremely sick the entire time. My biopsy was similar, didn’t give much insight. The have ruled everything else out so they decided to put me on prednisone because I also Crohn’s disease, another autoimmune disease as well, so they thought it could possibly be autoimmune. My enzymes finally normalized after being on prednisone so pretty positive that’s the cause. I Was curious if your liver enzymes have stayed normal on the Azathioprine? Have you been able to fully tapper off the prednisone? I started Azathioprine 5 days ago and hoping I can fully come off prednisone. Hope all is going well and you are feeling better.
Hey, I’m so sorry to hear that! I hope you’re getting better and healing. :) and I’m still on the lowest dose of Prednisone and am going to likely get off soon but I’m not exactly sure when!
Your story sounds so much like mine. Healthy and then out of no where abdominal pain. They originally said it was gallbladder or pancreatitis and I fasted for 3 days until they eventually fed me because my blood sugar dropped to 40. They finally did a liver biopsy and found AIH.
Same happened with me and my CT scan revealed liver disease, then fibroscan resulted in 4th stage liver cirrhosis. Two biopsies confirmed AIH. Been almost 5 years now, on steroids & immunosuppressant, doing fine with will power, positivity & good team of doctors treating me. 🙂👍Despite the challenges I am okay. Pls take care & I am sure you will be fine too. Love and hugs to you. ❤️🙂
February 2022 one night I woke up during the night, went to the loo, was there quite a while, was also feeling sick and clammy and really not feeling at all well. Next day not very good so rested. Noticed my pee was very dark and leaving staining on the Tiolet paper. Noticed I was a little yellow, but thought it was the lighting. Around the first of march 22 I noticed my eyes were yellow, so phones the doctors, and was booked in for following Monday.. went and bloods were taken, and told I would hear at some time. 5pm that day I got a phone call from the doctors, to say I was definitely jaundiced and I was to pick a letter up from them on Tuesday 6th and go to the emergency day care centre that same day. I arrived, was seen by a nurse, and a canulier was put in so they could draw blood and in case I was admitted. Blood was taken 2 times that day, I was examined by a doctor my liver area was sensitive, so I was sent for a scan which I think was a ct scan. Was not allowed to eat or drink. Around 5 -6pm that day I was called in to a room, and told the good news is it is not cancer which they would expect in someone my age. I’m in my late 50’s. They would refer me to the liver unit. So during 2022, I went and had bloods taken around 4 times during the year, heard from a consultant over the phone my alt or igg or something was in the 800’s when they started taking the bloods it has come down but not enough to be happy about, so they would monitor me. That was it till 30th march 23 got a phone call to go for bloods either that day or on the Friday. I went on the Thursday, and on the Monday 3rd April got a phone call from the consultant who said I have autoimmune hepatitis, so I would be going for a ultra sound and a biopsy. Got a phone call on Thursday 6th April was given a date for my biopsy and scan, letter coming in post to confirm. So 18th April 23 I will be going for ultra sound and biopsy and see where we go from there and at what stage my liver is at. So all new to me, as far as I was concerned I had acute hepatitis according to the blood paperwork. Since found it this is what you get leading up to aih. Lots of writing I know and apologise for that. Hope you are keeping well on your journey. Oh I lost 1 and half stones during this time. Plus side I have only put on 5 lbs since all this has happened.
I got dx'd quickly. I started out with hepatitis. my enzymes were over 1100. all tests for Hep, came back negative. then it came back, even worse. biopsy, showed AIH. 28 years later, still no remission
My heart just keeps thanking you and thanking you Dr Igudia for all you have done for me, you gave me your words that you could heal any sickness or disease, thank you for permanently curing me of my Hepatitis B virus you are amazing
My liver enzymes was like almost at 500 when I first found out and it been 8 month or so taking my meds and now I am in the 40s and going strong 💪 still hate getting my blood drawn and ivs
My wife is having liver problems now and she will be going in for a biopsy to test for AIH very soon. Were you able to eventually get of the meds or are you still taking them now 2 years later?
Hi Casey while you are testing and admitted, do u have a low-grade fever? just got diagnosed and awaiting for the result of bloodwork - C3,TPAG,Anti-dsDNA ,HEPAP this Friday. 🙏
hello, thank you for sharing your experience! I was diagnosed in 2016 shortly after graduating high school its honestly been a roller coaster especially with the medicine that gets prescribed and being very young it can hard on somedays. So I decided to come on UA-cam for other ppl like me who's going through the same..after watching this I will find some support groups too.
Thank you for sharing this video, especially because only recently there started to be more videos and researches about autoimmune diseases. When I was diagnosed with graves disease 6 years ago which led to autoimmune hepatitis, there wasn't any information about it. A negative side of autoimmune diseases is when you are a woman and want to get pregnant. It can be very tricky. Luckily due to my miscarriages, I went on a lot of research recently before going IVF. I found out a lot of things that conventional medicine don't even say it. First of all, when you're dignosed with an autoimmune disease, you should start an anti-inflamory diet: eat lots of vegetables, reduce sugar, carbs and even fruit intake (because of its sugar, fructose), cut off gluten, dairy or lactose. Add supplements such as inositol with all complex vitamin B, flaxseed oil, vitamin D, selenium, lactobacillus and milk thistle, all natural supplements that end up playing an important role on autoimmune diseases, because they reestablish insulin levels in the body. It's very common on autoimmune diseases to suffer from insulin resistance. Also it's important to understand that anyone diagnosed with autoimmune disease has a heavy metal inflammation, hence it's important to use natural skin products that avoid parfum and other toxic ingredients. It's also important to read the ingredients on food and supplements and avoid ingredients with sugar such as maltodextrin. I'm following all of this that I just described and I'm currently pregnant of 11 weeks, so now I'm crossing my fingers that by keeping this routine my pregnancy will come to a full healthy term. Best luck to anyone diagnosed with an autoimmune disease ❤
Hi there, I just want to briefly tell u about my experience. In 1985 I got extremely sick and yellow for months, and they just called it non-A, non-B hepatitis. After 10 years they tested my blood again, a process that took 6 weeks of different tests and found it was autoimmune. So it was prednisone and azathioprine and then only azathioprine . I haven’t been able to get off it without immediately going out of remission. So I try to be as healthy as I can, and let my body sort it all out; how to have a healthy immune system while it wants to attack me…so now I’m 79 and want u to know I take my meds every day, (they are short-acting so u don’t want to skip days if possible. ) And they really are doing a nice job keeping me going 😊
Just diagnosed November 2022. My enzyme levels are normal now that I’m on steroids and immunosuppressants. Hope you’re doing well.
i hope you’re doing okay today🫶🏾
hi girl! i just found your vid and i was recently diagnosed with the same thing. so glad i found someone who's going through the same thing, esp someone around my age too.
Thank you for sharing your story. It's cool that you don't exhibit or describe any fear you're experiencing. You're more matter-of-fact instead of describing how you felt emotionally about everything. That has been helpful. 👍
Thanks for posting this (Iknow 2 years ago!) These stories are always super interesting.
I saw your video & appreciate you sharing your experience! I have it too, was diagnosed in 2016 by liver biopsy & was at Stage 2. Had another biopsy in 2021, still stage 2. Was told I had a mild case of AIH. I feel like I’ve progressed to stage 3 now but don’t want to have another biopsy right now. My Dr put me on Prednisone, which I can honestly say has been a long term nightmare ever since I took it for 3 yrs! Tried Azathioprine but couldn’t take it. Tried Budesonide but liver enzymes went up. Was referred to Duke Medical Center in Durham, NC (I live in NC) to see a Hepatologist who specializes in AIH. She weaned me off the Prednisone I had taken for 3 yrs & put me on Cellcept which has worked good. The side effects of being on Prednisone has caused me to have Cataracts on both eyes. I had to have cataract surgery. Another side effect is it weakens your bones, which caused me to have Osteoporosis. From that I’ve had 12 Compression Fractures in my spine in the past 3 yrs. Spinal fractures are very debilitating & now I have Forward Head Posture (Kyphosis) from the 12 fractures. Last side effect I had from Prednisone was, it made me lose just about all my muscle mass! Just wanted to tell you my experience, you may not have these but a lot of people do. I hope I’m not discouraging you but I sure wish someone had told me what can happen to your body if you stay on Prednisone for a while. My Dr never told me any of this! Maybe your Hepatologist can find another medication to put you on besides Prednisone. I would probably still be on it if I hadn’t of gone to Duke. They are so much more up to date about AIH treatments. Just a note: You may want to check out Dr Craig Lammert, a Dr who treats AIH. He has a channel here on utube. He has a lot of experts to talk on his channel about AIH. I’ll find it & send it to you. Best of luck!!❤❤
Thank you for making this video 🥺❤️ I got diagnosed recently and it sounds similar to your story (down to the blood transfusions lol) so I feel your pain. My liver enzymes were 1500 at diagnosis and my biopsy results were inconclusive. It’s crazy looking back at how shitty I felt and how slow they were to react lmao. Its been 6 weeks now and I have this weird constant pain in my side where my liver is but idk if that’s normal lmaooooooo. The doctors in the UK suck (one of my doctors called me a drama queen 🙃) but I am starting Azathioprine so hopefully this nightmare will be over soon 🥲 sorry to rant but it feels good to meet someone with a similar condition. I’m sending you so much love and warmth and I hope you’re doing so much better now. Thank you for this video again ❤️
I am so sorry you experienced that! Your feelings are absolutely justified. Good luck, and I'm sending my best wishes
I understand completely!!
Love ur story just got diagnosed this week can we please get an update god bless you 🙏🏻♥️
so proud of you!
Love you so much❤️❤️
Recently diagnosed myself. Thank you for sharing this. Very helpful.
You should not diagnose yourself lol
Thank you for sharing your story. Did you noticed any improvement with diet?
Hey I hope you are doing well! Thanks for sharing your story. I just got diagnosed with autoimmune hepatitis. It’s Been a super long road for me, took them 6 and 1/2 months to get the diagnosis and have been extremely sick the entire time. My biopsy was similar, didn’t give much insight. The have ruled everything else out so they decided to put me on prednisone because I also Crohn’s disease, another autoimmune disease as well, so they thought it could possibly be autoimmune. My enzymes finally normalized after being on prednisone so pretty positive that’s the cause. I Was curious if your liver enzymes have stayed normal on the Azathioprine? Have you been able to fully tapper off the prednisone? I started Azathioprine 5 days ago and hoping I can fully come off prednisone. Hope all is going well and you are feeling better.
Hey, I’m so sorry to hear that! I hope you’re getting better and healing. :) and I’m still on the lowest dose of Prednisone and am going to likely get off soon but I’m not exactly sure when!
Your story sounds so much like mine. Healthy and then out of no where abdominal pain. They originally said it was gallbladder or pancreatitis and I fasted for 3 days until they eventually fed me because my blood sugar dropped to 40. They finally did a liver biopsy and found AIH.
Same happened with me and my CT scan revealed liver disease, then fibroscan resulted in 4th stage liver cirrhosis. Two biopsies confirmed AIH. Been almost 5 years now, on steroids & immunosuppressant, doing fine with will power, positivity & good team of doctors treating me. 🙂👍Despite the challenges I am okay. Pls take care & I am sure you will be fine too. Love and hugs to you. ❤️🙂
February 2022 one night I woke up during the night, went to the loo, was there quite a while, was also feeling sick and clammy and really not feeling at all well. Next day not very good so rested. Noticed my pee was very dark and leaving staining on the Tiolet paper. Noticed I was a little yellow, but thought it was the lighting. Around the first of march 22 I noticed my eyes were yellow, so phones the doctors, and was booked in for following Monday.. went and bloods were taken, and told I would hear at some time. 5pm that day I got a phone call from the doctors, to say I was definitely jaundiced and I was to pick a letter up from them on Tuesday 6th and go to the emergency day care centre that same day. I arrived, was seen by a nurse, and a canulier was put in so they could draw blood and in case I was admitted. Blood was taken 2 times that day, I was examined by a doctor my liver area was sensitive, so I was sent for a scan which I think was a ct scan. Was not allowed to eat or drink. Around 5 -6pm that day I was called in to a room, and told the good news is it is not cancer which they would expect in someone my age. I’m in my late 50’s. They would refer me to the liver unit. So during 2022, I went and had bloods taken around 4 times during the year, heard from a consultant over the phone my alt or igg or something was in the 800’s when they started taking the bloods it has come down but not enough to be happy about, so they would monitor me. That was it till 30th march 23 got a phone call to go for bloods either that day or on the Friday. I went on the Thursday, and on the Monday 3rd April got a phone call from the consultant who said I have autoimmune hepatitis, so I would be going for a ultra sound and a biopsy. Got a phone call on Thursday 6th April was given a date for my biopsy and scan, letter coming in post to confirm. So 18th April 23 I will be going for ultra sound and biopsy and see where we go from there and at what stage my liver is at. So all new to me, as far as I was concerned I had acute hepatitis according to the blood paperwork. Since found it this is what you get leading up to aih. Lots of writing I know and apologise for that. Hope you are keeping well on your journey. Oh I lost 1 and half stones during this time. Plus side I have only put on 5 lbs since all this has happened.
Thanks for this video it really helps xx
I got dx'd quickly. I started out with hepatitis. my enzymes were over 1100. all tests for Hep, came back negative. then it came back, even worse. biopsy, showed AIH. 28 years later, still no remission
Just diagnosed with seronegative AIH . 2021
I am diagnosed with autoimmune hepatitis 8 months ago.now I’m on steroids…and suffering from side effects of steroids.
My heart just keeps thanking you and thanking you Dr Igudia for all you have done for me, you gave me your words that you could heal any sickness or disease, thank you for permanently curing me of my Hepatitis B virus you are amazing
Hi Casey, was just here watching yoir video. How have you been?
can I go to the dance class if i take prednisone?😢
my doctors said that i shouldn’t do that
My son pass away last year because of autoimmune hepatitis. We did'nt know at all that he had this kind of rare liver condition.
I also got ANA positive today.. with mild fibrosis of liver.. is ot AIH?
My enzymes were like 10,000 lmfao that's a rare flex. Now it's normal and hopefully imma get off meds one day
My liver enzymes was like almost at 500 when I first found out and it been 8 month or so taking my meds and now I am in the 40s and going strong 💪 still hate getting my blood drawn and ivs
Totally agree! That’s how I am too now!
My wife is having liver problems now and she will be going in for a biopsy to test for AIH very soon. Were you able to eventually get of the meds or are you still taking them now 2 years later?
I am on the immunosuppressant to this day, but am no longer taking the steroid
@@KCD14 how are the side effects with the immunosuppressant? Have you been able to live a pretty normal life?
@@angrybeaver6667 I have an update video on my channel if you’d like to watch!
Hi Casey while you are testing and admitted, do u have a low-grade fever? just got diagnosed and awaiting for the result of bloodwork - C3,TPAG,Anti-dsDNA ,HEPAP this Friday. 🙏
I did have a fever but it was high and lasted for a while!
Did you have f3 if so was it reversed through treatment?
No I did not, I was lucky enough not to have much damage
Does these medications kill our sperm count?