I just breezed through this string and wow...I didn’t know about David as I’m rarely on. That saddens me but he was right, no one gets out alive :(...
Wow Emma! What else can you say? That was a super tough patch. Glad to hear Dougie is doing better and back on track. Can't imagine what all that was like as patient or caregiver. Ziff! Long time no...
Sorry I joined this discussion late...Mamalama sent me an email but I was out of town at the time. While CMV can cause CMV hepatitis and jaundice, they need to biopsy her to make sure it isn't...
Hey there, AndLo! Any updates since your hepatologist appointment?...
Ocamo, I’m not sure why you or your doctor would think you have AIH based on your ANA or LFTs...all your numbers are normal. Work on getting your cholesterol under 200 and if you need to lose weight,...
Yay! Let’s hope the PSC is fine too :)...
Hi Fletch! So my AIH came after having the family and getting divorced but I have remained flare free since diagnosis almost 11yrs ago (Jan 18, 2007 to be exact). I’ve survived one lay off and am in...
Hello AndLo, Welcome! I wonder if the CRP is related to your being mildly obese. Fatty liver is not uncommon with AIH. Has your doctor discussed the possibility of having NAFLD (non-alcoholic fatty...
hello nhelen79, I wouldn't worry so much either. Continue your path of diet modification and increasing exercise (whether your numbers improve or not). Exercise is beneficial even when diagnosed with...
Hi Itchyd! I'm not even sure how to start this...it sounds terrible and scary but I'm an optimist. Can you send more info please? ppm guy had perfect questions. Did the doctor say no to another...
Well isn't this the happiest post to see first thing in the morning? Glad to hear your guy is doing so well. It's been a long ride for sure!...
Hello AkiFeelsYucky, I'm not big on holistic medicine for treating this disease. That being said, I think it also depends on individual circumstances. My initial presentation was quite severe so...
I'm on my phone All my side effects whent away or started going away when I got down to 10mg of pred. I was on pred for a total of 22 months. Budesonie wasn't approved for use with AIH. It was...
I was wondering if they tested more specific antibodies...ASMA (anti-smooth muscle), ALK-1 (anti-liver kidney), and less commonly; anti-soluble liver/liver pancreas antigen (anti-SLA/LP) or atypical...
That surprises me. I thought there were less side effects with CellCept. I had none. I was only on it for a few months then switched to Imuran because I was going to be on it a long time. Have you...
Tmphipps, Sorry, I'm generally incognito but this year has been worse than usual. Anywho, yes, it could very well be AIH. And while it would be awesome if it could go back into "remission" - we...
Welcome Hudson, Have they run gallbladder tests? I'd ask for a HIDA scan. I'd also ask them to check for PBC. What about an abdominal ultrasound? It might be NASH or NAFLD. I agree that you need to...
Talk about being absent...I'm terrible and I apologize. This job doesn't lend me the same amount of time at my desk as the last. Then the HealingWell app went away. I do appreciate when you all email...
Hello Emerald-Ice, Welcome...sorry for my delay. Life...gets in the way of the things I want to do. I agree with Ann, everyone is different in their med mixtures. When I was first diagnosed (not...
I have to agree with the others. Definitely see about having your sister see a rheumatologist. If there is another AI disease at work, it could be confounding the issues Fariba is having. Is she...
Hello! I'm sorry I've been a terrible moderator. I was much better at my previous job when I had more time at my desk. Then HealingWell had an app and the app is gone so it makes it more challenging...
Sorry for the late reply. Have you spoken with your doctor regarding the pain? My understanding is that aside from AIH in general possibly causing pain, it's a quick weaning from steroids that could...
I would say "play nice" but it is an old, old story... The docs can't only help you once you need diuretics. They can help you much earlier but you need to actually go see one. We've all been through...
Hi again! Vitamins and calcium should be on your new list of questions for your hepatologist. Steroids cause bone thinning. I'd also ask for a baseline bone density test. It takes 5 mins and you stay...
Hi Dusanka, Welcome! For starters, know that you aren't alone :) If you ever need a more immediate response to a quick question or if you have a question of a more private nature, feel free to shoot...
Barb, Welcome and nice to e-meet you (I'm helping a friend get that out there :-) ). Anywho, I have to say I'm one of the lucky ones and don't have significant fatigue. I chalk up fatigue for me to...
The whole immunosuppressant thing is to get you off the steroids. Long term, the steroids are worse for you than the risks that come with the immunosuppressants. It is quite possible that the Imuran...
Hi Jesse! Welcome! Can I ask why you aren't on an immunosuppressant? How long have you been on pred and at what dose? I haven't been on pred for years and have always had borderline low BP. So I'm...
Sybil, I'm assuming you had a biopsy? What type of damage do you have, if you know and what are your LFT levels at? I'm also guessing you'll be having a new set of labs done soon? How often are you...
Hi Sybil, Welcome to the forum. I started my journey on pred. I've heard from my hepatologist and many patients that more AIHers are being started on budesonide (the drug name for Uceris) as it has...
Hi Erin, When Iwas first diagnosed, they put me on CellCept as it has a faster onset of action. I was on high doses of pred at the time but the only side effects I noticed were pred related. As Ann...
Hello all! I, like Ann, am doing very well...although, I see my hepatologist for my annual check in a week and a half...so I'll see what my bloods are up to now :) I have bloods every 6 months, see...
Cydney, I am so sorry to hear this. It is extremely rare for it to progress so quickly and not respond to treatment but it, sadly, happens. A few years back, there was a lady whose boyfriend died...
hello 808mama! When I was first diagnosed I started on 40mg pred and 500mg (twice a day) of CellCept to get things under control quickly. Azathioprine takes a couple of months to rally kick in. So...
Hi Valynon, I'm surprised you're on such a low dose of aza to go through your pred wean. How are your numbers and will they try to wean you off the 5mg pred or wait a while?...
So very well said, Susan! I completely agree with her advice....
I agree with the others. It could be from so many things. I asked about diet as I was leaning towards an allergy causing the itchies. So many things can cause it and it may never be sorted out....
I agree with the miz, you should speak to your doc. Are you seeing a hepatologist or just your primary? I have an autoimmune disease and it isn't uncommon to have Raynaud's along with that. So I...
I don't think there is a correlation. Maybe just a bad allergy season? I know it's way worse here in SoCal these days....
Congrats Mae!!! Girls are the best! My only point of reference is my only child daughter who is the bestest but still /community/emoticons/smile.gif ...
Maggie, If you have gallstones too it might be worth it to ask your doctor about ursodiol (Ursofalk, Ursoforte, Actigall & some other brands names - the drug name is ursodeoxycholic acid). It's a...
Hi Maggie, Welcome to the forum. AIH is a lifelong illness but as Ann and MamaLama have said, it is treatable. It sounds like your body is responding well to the steroids so that's great. I would...
Thanks for the info!...
Hey Susan! I tell people all the time I have adult onset ADD. I blame it on meds and AIH...couldn't possibly be me getting older /community/emoticons/smile.gif Thanks for the wishes and yay for BBQs!!...
Did your lab work include the normal range for each of these tests or was there a low or high written beside any of the values? Labs have different normal ranges depending on the equipment they use....
Truly wonderful news!!...
Mr. M. Welcome! I'd eliminate alcohol. I wouldn't eliminate the caffeine though. So instead of meeting people abroad in bars, meet them in coffeehouses :) Since you have a confirmation on EBV & CMV,...
Hi Managing! Welcome to Healing Well! Sorry you are having trouble with your AIH. I was lucky and my body responded well to the prednisone. I've been off it a few years now. I was also lucky that...
Yay!!! Very nice to have it as an official title :)...
They've never been concerned about it. The highest my total bili has gone, with no other changes, was just over 2. Way after treatment was started (bili was sky high prior to diagnosis). I can't...