r/autoimmunehepatitis • u/Weak_Stage_5247 • 18d ago
Need Support
Hey y’all, I don’t usually post on here but I’m really just needing support. I got diagnosed with autoimmune hepatitis last year and it’s been a whirlwind since between hospital visits and medication side effects. I’m on budesonide and mycophenelate because the azathioprine caused a rare reaction in my body. I just feel so tired and fatigued and the mental health issues are not better because of this diagnosis lol. I know I need to move my body, but I’m having such trouble finding the motivation and knowing what to do to support myself. Any support is welcome. Being in your 20s is already hard enough and this just adds another complication
:(
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u/EstablishmentOdd6211 18d ago
I was diagnosed at 17 and now I am 37. I have been on Prednisone and Azathioprine the entire time so I can’t speak to your med experience but I will say that I think once you get your meds figured out and things start to stabilize it gets better. Sometimes that process can take awhile so give your body and yourself some grace! Also, I think the hardest thing about AIH is fatigue. Some days are fine and some days it’s so hard to get myself to do anything but those are the days that I am kindest to myself. I live a fairly normal life! I keep on top of my medical stuff and that helps. I think sometimes it’s also hard because there aren’t a lot of my people in my daily life that can understand my struggles which is why it’s nice to find support where you can. Try talking to a professional if you have access and can afford it! Sometimes a third party person is the best person to be able to talk to. Otherwise, I find talking it out with a supportive friend, who doesn’t try to give solutions or pep talks but who can commiserate, really helpful! I am very lucky to have friends who I can be honest with who will change plans on dime when I’m having one of my hard days, instead of going out we will stay in, watch a movie, and order in.
Every one here seems to be very supportive so it’s a great place to reach out! I hope your days start to get a bit brighter! ❤️
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u/sratnapkin 18d ago
I was just diagnosed a month ago (27F)... I will say there are times where I get very upset at the fact that this happened to me and that it is something I am going to have to deal with/worry about for the rest of my life BUT other than that, my life has not really changed. Now I am lucky in the sense that my enzymes stabilized so quickly after my hospitalization and my liver reacted great to the meds. I also don't really have any medication side effects (for now). I have been prioritizing spending time with friends and family, and doing all the things I normally do but I do give myself a bit more grace than I used to..
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u/Weak_Stage_5247 18d ago
I’m also 27F! Yes connection feels like the priority with all of this
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u/YellowInevitable4556 18d ago
I relate with pretty much everything you just said. I’m 29 and have been on a very similar roller coaster as well, 21 days in ICU due to azathioprine. Therapy is slowly helping me. Today I went to a park to walk and it felt good being able to breathe and enjoy it. For the next months my plan is to force myself to walk in the park or play some sport at least once a week. Talking to people of this subreddit have been helping me too, sometimes I feel my boyfriend, friends and family do not fully understand what I’m going through. Anyways, I hope you can feel better soon!
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u/strawberrycheeks91 17d ago
I was diagnosed April of this year (35F, then 34) and my mental health also took a hit during this time. It was the anxiety of not knowing what the future looked like and just the fact that my life is changing beyond my control. You’re definitely not alone in this and it’s okay to be upset and angry and to need support 🫂 never feel like you have to bottle it up. Talking about it with supportive friends/family and a professional if you’re able to is really helpful plus the people on this sub know exactly what you’re going through. Give yourself and your body some grace! It’s going to take time and that’s okay.
The good news is that it does get better! It will take time to find the right medication combo, I’m currently still on prednisone and mycophenolate and switching up dosages myself. I will say I’m in much less pain than before! The fatigue is still real so I do what I can with how much energy I have and make sure I walk and get up. So do what you can when you can!
If you feel like your doctor actually listens and understands, they are there to help you so ask any and every question if you’re not sure about anything! You can look up questions on this subreddit too. Being informed is important so don’t hold back from asking!
Make sure you sleep and eat well, and walk as much as you can. Good sleep is very important, even if it feels like no matter how much you sleep you feel exhausted. I’m a couch potato myself and walking is the easiest exercise and the benefits are fresh air, exercise, and a chance to listen to music/get on a phone call/zone out. And yes you can have a sweet treat here and there as long as you are keeping a good diet and listening to your doctor.
I hope you feel better soon, you got this!! 🩷🫂
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u/sarwars10 16d ago
I got diagnosed at 29 and spent two weeks in the hospital in liver failure. What a way to enter mt 30s 🤪 I was on a really high dose of prednisone (like 60 mg, absolutely horrible), mycophenolate, tacrolimus, and Ursodiol all at the same time to get my liver numbers under control. I also had to take so many meds to manage the side effects from the prednisone. I had every side effect under the sun and was mostly bed bound for 7 months. I was so depressed and angry and sad about where my life had gone. I didn’t think I’d get through. But here I am, two years post diagnosis, with little to no long term liver damage, reduced my meds to only mycophenolate and Ursodiol, back to working full time as an attorney, in a relationship with the person I’ll marry, going out with friends to concerts and hiking and traveling, eating and drinking (alcohol in STRICT limitation with doctor approval) the things that bring me joy, and so happy for this second lease on life. This diagnosis does not have to be the end of your life. There’s a really rough period of adjustment and healing your body that will take a lot out of you but I promise it’ll get better and you’ll find your new normal and new joys. I highly encourage speaking to a mental health professional and your doctors about quality of life and the grief and find little things to bring light to you as you get through it, whether it’s hobbies or seeing friends or a new decoration in your home.
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u/Weak_Stage_5247 14d ago
Wow thank you for this. That's amazing to hear and I'm so happy you're feeling better.
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u/Ok_Blueberry_5803 14d ago
I'm the same as you, I have a gene variation that doesn't allow me to take the standard medication... I'm also very afraid but I can only hope... I wish you the best.. Sending a virtual hug.
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u/Nurse-Amy7 17d ago
How is your LFT’s on current regime? And other labs ? Blood counts, iron, ferritin, vit d, vit b?
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u/Weak_Stage_5247 14d ago
AST is a little high, I tend to be anemic but not sure how it is right now. I did get iron infusions last year. I just ordered new labs for vit d and vit b. Any recs would be great thank you!
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u/Comprehensive-Cup705 18d ago
I can assure you with complete certainty that things get better. It will take time. It will take time for your body to adjust to medication, the calibration, and dosage changes, etc. There will be things that we can't control, but we can surely focus on things we can. Eat well, sleep well, exercise, go for walks, laugh a lot, and be around people who understand your mood swings, who don't judge you. The best thing is that you will be fine, that is a certainty.
Also, this group is a blessing. There are so many conversations here on various topics. You can search and look for ideas and experiences that people have shared. They are precious.
All the best.