hi James! I hope all is going well with you. do I wonder if any of my illness is brought on by supplements? I don't know. I guess anything's possible but I'm not a doctor so I don't know. Was I on any new supplements when this came on? Yes. But it was only like, an extreme multivitamin combo? I would eat normal I would eat healthy and I sometimes would use meal replacement shakes. But I don't know. one of the big things that I've read up on is that the processed foods? All the processing and additives that happens to our foods is helping to cause autoimmune disorders like this one. was i a big drinker? Nope not at all. I used to be when I was 21? But i get migraines from it...so that was ruled out. No cirrhosis of my liver was shown when they took my biopsy so I feel lucky for that. there's just so much about this disease or disorder that doesn't make any sense to anyone. It appears that everyone story is different. Everyone I just the medication differently. hello! Even doctors treated differently!
how long was my bloodwork good before he took me off the prednisone? I honestly don't know. I ended up taking myself off of it when I was on 5 milligrams and I know that I shouldn't have done that. they had suggested putting me on a winning situation where would be for milligrams per month 3 milligrams for another month and so on until I was down to one milligram and then they wanted me to cut it in half and I couldn't do that anymore. as for the in urine? According to my doctor it doesn't do anything to my body? especially in the amount of it I was taking. however I no longer take that either. let me preface that with it is completely against my doctors wishes. He's suggesting that I do not take myself off of the Imuran due to the nature of how fast and how awful it was when I came down with it. please understand! My doctor does not want me of medication. It is my choice but I took myself off of it because I don't like what its done to my body. I used to be very in shape, I used to be with and my normal weight range. I now weigh somewhere close to 240 and I still can't take it any of the weight off. I was hoping that SOME of the weight would come off..but no luck. it has now been over a year since the beginning of my journey with this disease / disorder? and everytime my hands will itch..I get nervous that it's back. I'm EXHAUSTED. All the time. Work doesn't understand. I certainly can't work out like I used to. I'm trying to go back to roller derby... it sucks. But the only thing you can do is take it & keep going. according to everything that I've read, according to everything anyone has told me, it's only a matter of time before we relapse. But I want to make sure that I am prepared for the next time.
Good luck to all of us..it's good to know we're not alone.
Hi Cindy!! I was just checking in to say that my doctor says that I'm steadily on my way to remission!! Levels are normal, I'm FINALLY off prednisone (squee!!) and I went off the Imuran.. BUT the doc still wants me to stay on the Imuran because he's concerned that if I have another episode, it'll be worse than the initial one (and since it was so bad the first time, they're concerned it'll near wreck me *shrug*). Now, my question is this.. How long should I expect to have to be on the Imuran before they think I'm "normal" and take me off, or does this vary per person? Everything else is, pretty good, I think. Just tired, as usual
I pray everything is well with everyone else.View Thread
Do what? wait? lol I cannot speak for anyone else, all I know is what I do.. and so far it's just been me, being impatient. Wanting off this medication. Hoping that things won't go back to what they were. And in general freaking out? Won't do anyone any good Least of all yourself. Stress and all. I'm.. definitely not perfect in any of this. I'd like to cross my fingers and PRAY that this 'medical freak out' doesn't happen again? And I say freak out, because, I think, like a lot of everyone else here.. no one knew it was happening, what it was or anything. (That's what I understand at least) And then starts with the docs and everyone flipping out, because you know something isn't right, and "why am I feeling like this?" and "What do you mean my eyes are yellow?" When I was in the hospital and they were going over the multitude of what COULD be wrong, they wanted to rule out a (what seemed like to me) bazillion things, and they mentioned AIH, which, I quickly looked up on my phone, got to this spot and was like.."I REALLY hope it's not THAT! I don't have any reason to have that!"
but.. as we know.. this is where I am. You learn a lot, and learn that you're not alone, and to me, that helps..doesn't make it the BEST, esp since there's still a bunch of "how? WHat? no that doesn't make SENSE!" to everything.. and it seems that no one has any answers.. only more questions.
So yea. How I do it? I look at where I was in March..and I don't ever want to be back there again.Not that I can hugely affect (other than not taking medication).. but I don't know if anyone else knows any tricks to affect it either. All I have is tricks on how to not swell up when taking prednisone. What you can and can't eat while on this medication (because of the crap your body isn't filtering right). NO SALT! makes your face swell and makes you all teary in the morning. Other than that.. nothing magical. Just praying it doesn't happen again.View Thread
It IS scarey. But there are a lot of people here that know what you're going through and are here to help. Good luck. I think we all know (to a point) what you're going thru and are here to assist in any way we can.View Thread
Good Morning McCindy! so.. how I have been doing. Well, my AST & ALT levels have returned to 'normal' (he said they were still a LITTLE high <40>, but way better than the 1300-1400. YEA!!) and they're beginning the lowering of the Prednisone (which, if I could, I would just VETO that altogether.. I wholly dislike that drug. I mean, it works, but all the side effects? I've had HORRIBLE sweating (yuck yuck yuck!!!) issues with sleeping, issues with vision, the weight gain.. my list is long with the side effects However, according to my doc, he'd rather have me deal with the side effects than the other option of well, the other option. But if there IS a next time? I'm totally going to see if there's another drug). The Imuran is fine, and my life is almost back to 'normal'. I say ALMOST because I still cannot get up, wake up, get up and go. I would seriously sleep all the time if I could. The day after a bout, I sleep the whole day. If I work out and then have a practice that night? I end up not coming into work until around 10:30.
about how long until I'm not sleeping all the time/exhausted? lol I'm on 20mg of the Prednisone till next month, when they're going to lower it to 15mg if I'm still fine. 200mg of Imuran. I've discovered that if I eat anything with salt or anything processed, my eyes get really swollen & watery by the next morning. Same with my hands and face. It's really weird. So I'm pretty much at a macrobiotic diet, water and coffee. I really wanted to get here with my health ANYWAYS.. just not like this lol
Hey Cindy! I'm still exhausted.. my boyfriend actually bought us a weekend pass to a concert this past weekend, and we didn't go. I just slept the entire time. sure he was thrilled. I've been taking Melatonin to help me sleep, and that works.. but now I'm dealing with the weight gain. super un-cool. But the prednisone IS working to lower my elevated levels...however I went in to get a copy of my whole hospital stay, in terms of medical records, and I am SOOO mad!! They listed "habitual abuse of narcotic abuse" as one of my diagnosis' along with "tobacco abuse". I'm like.. hello??? didn't you pay any attention??? LOVE being typecast.View Thread
Cindy, Thank you for your very thorough response.. it gives me a better vision about what's in store or what to look out for. Your response made me cry actually. This is just overwhelming to me at the moment I will be here reading up. And I will take your advice.. I don't feel sick. That's what the kicker is! But tired. Very tired. so I'll cool it. I promise.
Thank you again, Cindy and the group. I appreciate this place for support and help. HeatherView Thread
Hi Annie, I'm Heather. Mom to a miraculous little girl that was never supposed to 'happen', Web developer, graphic designer, Roller-derby girl, "Health nut" extraordinaire. My mother has RA, my sister has Fibromyalgia, and I was diagnosed when I was really young with Hoshimoto's Disease, it miraculously went away one day and up until now, my only big problems were migraines and reproductive issues like cysts and crap. I was just 'diagnosed' with AutoImmune Hepatitis type 2. I'm 37. I'm tired most of the time.. I try to work out my normal 5 times a week for an hour, but its hard to now. I see both my sister & mom being ravaged by their diseases and get totally put out of commission, and it scares me. I can't be like that. I don't want to blame anything on my 'condition', my medication, or whatever. So this whole step here is pretty big for me.View Thread
Hi there, My name is Heather. I was 'diagnosed' with AutoImmune Hepatitis type 2 JUST within the past month. I'm 37, a mom, not a druggie (like they thought when I went to the ER) nor a drinker, I'm a roller derby girl, physically active, otherwise healthy and stressed (which is what they're telling me may have triggered it). Um.. I'm not sure about any of this, honestly. I thought I had a UTI, my urine was the color of apple cider vinegar, I was exhausted, itchy and yellow (but as a mom, there's a BAZILLION of reasons for this!) and foggy headed. No pain, no discomfort, but I was in full liver failure. I went to the urgent care at the urging of my boyfriend, and they tested me positive for Biliribin in my urine, like, galactic amounts; my liver enzymes were in the 1250's, so I was told to go immediately to the hospital. I spent a week in the hospital; they took me off of my migraine meds, anxiety meds, everything. Saw at least 15 doctors. Tested negative for everything they tested me for.. no markers in my blood for anything, but my enzymes were getting higher and they decided to do a biopsy. My biopsy was seen and discussed at symposiums across the US. Everyone was telling my doctor (who didn't want to put me through the rigors of steroids if there wasn't a reason to) that I had hepatitis. He disagreed on account of the lack of markers. I was getting worse.. now I was getting pain and my weight dropped 15lbs. So.. he took a chance. Put me on 30mg of Prednisone. My AST, this last test, was 60 (this is after a month of being on medication), my ALT is down to 95 and my biliribin is back to not being in my blood. After 2 months of this.. I'm finally cleared to go back to work, back to normal activities, and can even play roller derby again "If i can not over-do it". I'm supposed to start the decrease of Prednisone on June1 and start Imuran shortly after. I'm scared.. I think all of you know this feeling. I remember looking on my phone at this site, praying that I wouldn't have to look for support for something like this, that I'd wake up and it would just be gone and I wouldn't need a nap and my life could just go back to normal. But 50% of people with this relapse? Do I have to state "has hepatitis" on medical forms? I don't know.. my PCP doesn't know, she's just a regular doctor. No one knows anything as to why I would've gotten it, and I guess I don't get to get rid of it. Does the exhaustion get any better? What works for the nights of not sleeping due to Prednisone? Because they still want me on as little meds as possible.. so yeah. Hi everyone. I'm a part of this now too..View Thread