Autoimmune Hepatitis

Just got diagnosed. Well still waiting on liver Biopsy for final word. Had CT scan and MRI and Ultrasound done the Doctor didn't really mention anything bad. I am scared and worried. My enzymes were over 1400 and am now on prednisone and Imuran. Last week AST went to 189 after 2 weeks and Alt is 423 .. So going down. Urine clearing up. I am very depress and cry constantly. Joint pains too. They thought at first I had Lupus. But 2 doctors said no thought AIH instead. I just want to be happy I am 60 years old and was happy. I have 1 granddaughter almost 2 and want to see her grow. I just wanted to hear from all of you .. I am eating good changed my lifestyle to Gluten Free and organic. Lost lots of weight can't seem to put it back on as much as I eat. Is that normal? I had 2 surgeries last year back to back and I believe all those drugs and surgeries did it. Thank you for any responses you have. 😒

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  • Hello Nidia-1957..The worse thing in the world is to be unhappy & unsure..You don't know what the outcome will be so why stress about it now. I am 58 & have had Hep C for 20 yrs now. Last night it was comfirmed that i have cirrosis of the liver. Now i can go 2 ways. One way is to worry myself into more health problems. The way i chose is to be positive and know in my heart all will be okay..Yes i did get a bit scared. But i have no control now. All i can do is see the right doctors follow their advice & pray...Many Blessings to you..and try to keep yourself in the present!

  • Thank you so much. I know. Prayers for you. You are strong. πŸ™ I have high anxiety and prednisone doesn't let me sleep. I am trying so hard to get out of this depression and sadness

  • Nidia-1957....Please ask your doctor for something to help you sleep & your anxiety. They give them to me. And i try to take them only when needed. Pls let me know how it all goes also. Thanks and God Bless You

  • Thank you. What did they give you to sleep?

  • Ambian 4 sleep and a low doge of clonopin for your anxiety. Or what i do is take my clonopin at night & it helps me rest and sleep..Trust me i know about anxitey .i have to see a (hypnotist sorry i need new glasses) Just to get my teeth done..I shake so badly ..So i can relate to you very very much.

  • Good Morning & I prayed you had a good night sleep! Hoping your feeling a bit better, We are all strong you are also..Just keep on keeping on & know in your heart & soul God is here with you ,,Reach as far down as you can go into your gut and ask God or whoever you believe in to help you hunni...I am a firm believer of Angels also..

  • Thank you so much. This is a lot for me. I took little Xannex and rested. I just wish my depression and crying would stop. I am going to read my book Battlefield of the Mind. Prayers for you too. I need God to help me get out of this deep depression maybe it's the medications. God is Great. Going to church later and Praying. I want to be me again. You're such a wonderful person. So glad you're here to help me. It seems I can't rest more then 4 hours. Maybe pills.

  • Thank you & i am blessed to be able to help you in anyway i can! I wish we lived closer because my son suffers from depression and i continue to try to help him all the time. I hope you don't mind me asking you a question? Did you suffer from depression all your life? Or since you have been diagonoised? Nidia Tears cleanse our soul..It is kinda like our way asking God for help. It is a very tough situation we are in. And i have many things i have to think about also. But not today. Today i am going to try to help you when you need me. watch tv & listen to my favorite music. 4 hrs is not enough sleep. Can you ask your dr. if he can go up 1mg. on your xanax? I remember i went through a very bad anxity attack & i didn't sleep for 72 hrs! Finally went to the Er. and they gave me xanax...I cried all the time (during the 72 hrs) our minds need to sleep along with our bodies..We do not fuction very well on 3 or 4 hrs of sleep.

  • Yes I need to sleep more. This is driving me crazy. I believe I have always had depression and Anxiety. Getting this news has taken me over the Edge. I pray so Hard God helps me get through this πŸ™I also pray for you. I pray my enzymes continue to keep going down. I just want to feel like me again. I need to get out and not think so much. Someone suggested A Therapist. You have a great attitude ❀️

  • Yes that is a wonderful idea! A therapist will help..Like i said earlier in our conversation...I see a hypnotherapist Dr.. So far my second apt is coming up soon. This apt. i will get under hypnosis. At this point i will try anything to get over this panic of seeing a dentist & other issues i have. Ow i am also dealing with not being able to walk.(due to an accident ) so yes i have many issues but i refuse to let them take over my life. It is my outside time. So i will return in a couple of hours. It is very hot here. What is one of my passions is nature. Love taking pictures of all the birds & the sky. Talk soon.

  • Enjoy your beautiful sunshine. Prayers that you can walk comfortably soon. I sat outside today and ate 2 times with sunshine in my face. It felt good. It's just as hot here in Florida. Thank you for staying by me you're a great person. You're my motivationπŸ™β€οΈ God always puts people in your life for a reason that I will always believe ❀️😘

  • Good evening Nidia..Had a wonderful day today. I hope you did too! I will continue to keep you in my prayers as i pray you start to see a light down the tunnel you have been in. I also believe God put's people in lives for reasons <3 Happy to hear you went outside 2 times & ate! Maybe in the next couple of days try 3 times...Love & Light and so many Blessings i am sending you. The sun made me very tired. So going to bed a bit earlier tonight. I will be up for another hour if you need to talk..God Bless You

  • You have a wonderful evening. Went to church and trying to stay positive today and not letting every single pain get my full attention. Trying to stay more positive and praying Monday when I see my GI and go get more blood that I have good news about the enzymes going down so moreπŸ™ I am trying really hard. Will take Xannex again tonight to help me sleep .. I Hate I wake up automatically since on these medications. I pray you sleep very good tonight and have sweet dreams β€οΈπŸ’•πŸ’•. 😘Thank you for everything you do for me

  • No need please to thank me <3 Ask your doctor for pain meds..If you don't already have them. There is no reason you should be in pain. There are pain meds that don't effect the liver as bad as lot's of them..I will also pray about your enzyme leval going down. I have a feeling they did :) And yes i can see as God can also you are trying hard! and that's all we can do is try <3

  • β€οΈβ€οΈβ€οΈβ€οΈβ€οΈβ€οΈπŸ™πŸ™πŸ™Thank you so much

  • Good Morning Nidia..How are you doing on this hot Sunday? I prayed you got some much needed rest. Funny i was awake every 2 hrs going to the bathroom. I guess it takes all the water ( swelling in my legs) down.

  • I slept better last night. I guess my body had enough.. raining here today. Praying a lot. Tomorrow I go to Gastro to get more labs and maybe biopsy results I am very nervous about that. It's been almost 2 weeks or more since Biopsy makes me nervous.. I Praying go some good news. I am achy today. Sorry you were up every 2 hours 😒 I am trying real hard here. πŸ™πŸ™πŸ™

  • Thank you but sometimes my body just goes through that. I need to get out walking more in my chair at night. And i am also looking for a great or some good vitamins to take for my cirrosis and my brain fuction. I do take milk thistle and dandelion root..I just read vitamin B is i need to order. happy you slept better dear! And trying to stay on chicken & fish. any suggestions?

  • I have low dosage Xannex. Maybe take i should take that i just get scared cause of liver

  • What is bad for your liver is tylenol. Acetaminophen..That is what is bad 4 your liver. xanax are fine..I was on them for awhile. Even my pain meds can't have acetaminophen in them,,,Try it you need to rest & sleep. But plz follow Dr. instuctions..Good night & i will check on you tomorrow. I live in california..and it's only 10 pm..But i get tired easy..God Bless You are in my prayers

  • Hi there, this is my first post on this group. So happy to find such a supportive group. I also was recently dx I am currently on Harvoni for HVC for 12 weeks. I had a scan and found out I have gallstones too. Dr says my fibro scan showed some cirrhosis in a small area, but most of it was stage 3 fibrosis.

    My platelets had been below normal for a while. After 4 weeks of Harvoni, my platelets are normal at 230k! I am hoping this means my liver is healing too. I tend to worry but my dr is so calm, he makes me feel like everything will be fine. I do feel very encouraged with the platelets improving so much, so quickly!

    They told me there were a lot of potential side effects from meds, I have only had minor pain briefly and Red eyes with pain in them. I am typically a night owl going to bed around 1 or 2. But have been staying up to 4 and 530 am at times since being on tx, without realizing it.

    Wishing everyone a wonderful weekend. Congratulations to all of you that have been able to stop drinking and drugging, my dr says that is one of the best things to do. Thank you for listening.


  • Hi redeyes2 I really haven't introduced myself. This is a wonderful support page& i was diagnosed with Hep. C like 20 yrs ago which of course turned to Chirhoss of the liver..I have a question 4 you. The E.R. Doctor informed me just the other night of my liver & wants me to get on Harvoni or some kind of anti viral drugs. Can you plz share your symptopms from the antiviral med? Thank you..I have so many symptoms from my liver being so bad.

  • Angel195t9

    My main symptoms were staying up too late, taking longer to do things, headache in middle of head on top every morning lasting a few hours, a few times pretty severe, but usually it was tolerable and didn't stop me from doing my duties. It was pretty easy compared to other meds I have had. I felt calmer while on it then I normally feel. BTW, the 12 wk program and I reached undectable status (hooray!) . All side effects from Harvoni are gone and I am feeling pretty good inspite of it all. If you haven't started yet, I recommend picking a time of day/night when you know you are usually at home as they have you set a time of day to take it and encourage you to set an alarm to make sure you take it at the same time of day. Finished taking them a month ago. In Nov. will hit 24th week since started taking them and will go for lab work. If all is good, they will consider me cured.

  • Dear Nidia, you say you are worried and scared, but don't make it clear why. (or maybe I have missed something? ) I have AIH and have had it for 9 years almost. Many people with AIH have had it a lot longer, so if you are worried that you aren't going to get better, you can get better, as long as they get the dosage of treatment correct. Initially thy will try to restore your ALT levels to normal (this is the key indicator for AIH) and after that they will try to get you on a maintenance dose of meds. There is a well recognised protocol to follow in terms of steroids and Immunosuppressants (both of which you are on) and the fact that you have responded so well to them is a good sign. Some people can't tolerate the drugs and have to try alternatives. Try to take heart from the fact that your ALT has come down so rapidly and that this diagnosis is not a death sentence. AIH is a managed disease. The steroids (prednisone) bring the inflammation down and then you may come off them or kept on what is called a maintenance dose. Most people then only need the Imuran to keep the immune system in check.

    Please ask if you have any questions. There is also a Facebook group which you can join and even if you don't use Facebook, it is worth joining the group to attend the twice yearly talks (assuming you are in the UK). Good luck :)

  • Thank you. I an just so scared, have so much anxiety and depression. I hate the way I feel. I want to feel happy and not crying all the time. Is this medication making me feel like my life is doomed? 😒

  • I have to say I'm not really sure what is causing this, (the meds have never had this effect on me, so I can't comment on this aspect) but suggest that you mention this to your GP/consultant, whichever you see first. Your life is not doomed.

    It might take a while to return to normal activity, but I have found making myself do things, even when I don't feel like it, has been the best medicine, especially when I have been feeling at my worst. Going out for walks, gardening, spending time with family and friends, these have all helped me to recover more quickly and really lifted me. Keep trying to follow a routine of some sort and little by little, you should feel you can add to the routine.

    A diagnosis like this may have shocked you more than you realise and getting some counselling could really help you with this. Just a suggestion. I really hope that you feel better soon. All the very best :)

  • Yes it has shocked me. I have always been the life of the party. Love to dance and joke and just laugh all the time. I just feel sad and depressed. But I am going to look into a therapist next week and seek help. You have no idea how much I appreciate your kind words and your support . More then you will ever know. Please continue to keep in touch. I just really wish I could sleep at night 😒

  • Hello nidia, I am so glad that my response has been of some use to you. The sleep thing is a pain. I spent 9 months after initial diagnosis itching like crazy and trying to sleep in a house without heating (any amount of warmth set off the itching). Sleeping in a cold house is nigh on impossible if you aren't used to it, so I do know what you are talking about. I was still working at the time and had to stick to a routine. I have found over the years that a late afternoon nap lasting anywhere between 1/2 hour and an hour has been the most beneficial to me in restoring me to normal level, regardless of the amount of sleep.

    Unfortunately we are all programmed to feel that sleep at night is the "thing" to do, so when it doesn't happen, it affects us deeply. There are techniques that can help with this, (so again the therapist should be able to suggest some techniques to you) although my consultant tells me that the steroids can be the cause of disturbed sleep- I don't find this. So you might find that once you can lower the dosage, your sleep improves.

    I personally have found that yoga techniques are the most beneficial at helping me to sleep and relax, but also getting up when sleep evades me is something I occasionally do. Maybe you could draw on your creative resources and spend the time writing a story for your granddaughter ( or maybe that's a stupid suggestion!!!)

    Anyway, try to remain calm and positive and focus on getting the help you need. In the meantime, I really wish you all the very best. :)

  • Thank you so nuch. It's a very scary time in my life. I pray so muchπŸ™ I have to think positive and get out of this dark place. I want to live long and not be scared no more. Depression and Anxiety has made me think too much. Please keep in touch. β€οΈπŸ’•

  • You are very welcome. If you talk to other people with AIH, you will find anxiety is a very common problem. Your responses are very natural; one minute your life seemed to be going along fine (obviously I'm guessing here, so excuse me if I am wrong) and then whooshh! the carpet was pulled out from beneath you. I personally found CBT really helped me with the anxiety.

    Sending you lots of positive thoughts and please ask if you don't understand what you have been told, I may be able to help. All the very best :)

  • Thank you so much. I go for more lab work today and biopsy results. Medications seem to be working but hate the way I feel . I am praying.. I will keep in touch and let you know. πŸ’•

  • Hi Nidia-1957...I am praying you received some good news today! But either way just know God is now in control & after reading many discussions on here,,there is so much we can do to live longer! So whatever you do never ever give up! Blessings

  • He said it points to Autoimmune Hepatitis he's almost 90% sure. Said liver was very inflamed so was hard to really say (Don't Get That). But says I am responding good to medications for Autoimmune Hepatitis. Wants to see enzymes going down more before lowering the prednisone any lower. But eventually will have me way low. I see a liver specialist next week as well. I asked if any damage or anything and said that it was Too inflamed. But continue the meds eating healthy And therapy would help me mentally so I don't stress and worry so much. Says I have to see the positive in everything instead of the darkness. Has me getting a bone density test too. Told me to get calcium 3xs a day and probiotics and Vitamin D as well. And to excercise and once I get into remission they will continue to look at liver and do MRI and other test. He said mentally I am giving myself death sentence. Looking up things on internet no good. He said I could be in worse condition. I pray enzymes go to normal and I can start just not focusing and worry about what's going wrong or can go wrong ahead. It's in Gods Hands πŸ™πŸ™πŸ™. Now to try and enjoy life. How are you my friend? How is your day?

  • i am sorry ..But love the fact that your going to see a therapist..And yes i agree by looking at the tunnel of darkness will kill you :( look deep inside & find that Light it's there...Try affirmations & I found out there's a very good book you can read for your diet.

    Medical Medium: Secrets Behind Chronic and Mystery Illness and How to Finally Heal by Anthony William..I already ordered it. Also Milk Thistle is wonderful for our liver.Try, try hard to always be positive! Do you have a gmail? I can send you much info..Or facebook? I have learned so much in the last 7 yrs about always staying positive & what we think we get..It is hot here so only got 1 walk in so far. Will shower later & continue my exercise.Your in my prayers always. I believe in miracles since my liver has failed 3 times. I am still here. So know God is not done with us ..We are still a work in progress sweetie <3 Let it all go and give it to God.

  • I would love that Thank you so much πŸ™ Giving it to God.

  • Befriend me on Facebook too please πŸ’• Nidia Seibert

  • Thank you and i shall do that xxx

  • Dear Nidia, please be aware that no liver specialist will recommend milk thistle. It is unproven as far as the medical profession is concerned. :)

  • Ok good to know. I don't take it. Just probiotics and calcium and Vitamin D is all I am taking. He did say take Milk Thistle but I knew better. Thank you 😊

  • But I think today was good news in a crazy sort of way. At least it wasn't bad. He seemed very positive with me. Said I can go into remission for long time. It's all in the mind. I will continue to take care of myself and go do things... I need too. πŸ™

  • Hi

    I hope you are all feeling better. I have Nash and have so much pain I only get about an hour's sleep per night. I came down stairs the other night, made a brew and I was so tired I nodded off for a split second and spilt boiling hot coffee over my leg. Had to go to a and e, keep having to have it dressed, it's so painful. Sheer exhaustion that did it. 21st July was when it happened. See my liver consultant on Thursday. Love to you all Lynne xxxx

  • Best of luck to you Lynne prayers. Keep us posted πŸ™ πŸ’•πŸ’•πŸ’•

  • Wonderful! Your on the right tract dear..It can't happen over night. But i promise it will get easier once your thinking get's more positive <3

  • Thank you so much for your kind words. Please take care. Lots of love Lynne xxxx

  • No problem. We are here to support each other. I have gotten great support from great women here. β€οΈπŸ™πŸ’•

  • Yes, do have I. It's a brilliant group to belong to. Night night God bless xxxx

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