Aa
Autoimmune Hepatitis
Diagnosis: Chronic active hepatitis with marked interface components and bridging fibrosis. Ulcerative colitis and hypothyroidism.
Can I pass onto my partner any sexual diseases?
I am taking prednisone, imuran and losec, can any of these medications cause
sores in the mouth (tongue)?
Can I pass onto my partner any sexual diseases?
I am taking prednisone, imuran and losec, can any of these medications cause
sores in the mouth (tongue)?
I believe as long as you have autoimmune hepatitis it is absolutely not contagious. Auto hep is something you are pretty much born with. It is something that appears in your body typically due to a viral bacteria or sickness that lingers. After awhile they don't know why it turns into a autoimmune disease. I know they are not contagious!!!!!!!! I think the disease is still pretty much a mysterey to Dr's, but at least it is not contagious. No sores in my mouth, and I'm on the same meds. I am not on losec though. What is that? I am on 12.5 mg of prednisone and 200 mg of imuran. How about you?
Thanks for your reply. I am finally on 20 mg prednisone now for 1.5 weeks. I started May 1st '07
on 40 mg. Boy it's a hard drug. I've gained about 7 kilo about 15.5 pounds and tons of zits. I never had 1 zit durring puberty. I am on 75 mg imuran and another word for Losec is Omepradex 40 mg per day. When did you start with all this?
Good luck
on 40 mg. Boy it's a hard drug. I've gained about 7 kilo about 15.5 pounds and tons of zits. I never had 1 zit durring puberty. I am on 75 mg imuran and another word for Losec is Omepradex 40 mg per day. When did you start with all this?
Good luck
I started w/all of this in March, 07. I started on 40 mg of prednisone as well and am down to 12.5 mg. I am up to 200 mg/day of imuran. Not on the other drug, but I may ask my Dr. about it. Is it a immune lowering drug?
Anway, I have gained 20 lbs and have zits myself, so I know where you are coming from. It is all starting to stabalize. You'll get through it. I hate the puffy face and the fat arms. Those seem to have been hit the worst by prednisone. How are your liver numbers? Coming down? It seems to be a slow moving process, huh?
Anway, I have gained 20 lbs and have zits myself, so I know where you are coming from. It is all starting to stabalize. You'll get through it. I hate the puffy face and the fat arms. Those seem to have been hit the worst by prednisone. How are your liver numbers? Coming down? It seems to be a slow moving process, huh?
It must be great being on 12.5 mg prednisone. Your liver must be reacting well to all the drugs. Do you feel any different. I am very nervous and just lose it at times. I try hard to control myself. I have blood test next week so lets hope my liver numbers are down and then I will go down on the prednisone. I've never had such an appetite. It's funny people look at me and I can just tell on their face that they are dying to ask me whats wrong but they don't.
I know what you mean when you say it's a slow moving process.
I know what you mean when you say it's a slow moving process.
I know how nerve racking it gets around test time. I have tests in 2 weeks, and you start counting down the days, huh? I feel good. Lately I've been a little more tired, but my Dr says it is due to the drug building up. You just need more sleep. The longer we are on the meds the more they build up, and that is when we start seeing more side effects. That is why the RUSH to get off them.....It is a very slow moving process, but it will get better. Time tends to just sort of pass...The appetite? funny, huh? We can eat a house. I have learned to stabalize that. Trying to eat much healthier!!
Hi There...
I too have AIH and I wanted to mention to you both that I also used to take Fosamax, which is meant to protect your bones while you take prednisone... Anyway, I just wanted to mention that to you both, so that if you want, you can ask your doctors about it...
How old were you when you were diagnosed? I was 25... I hope you are doing well... I know I was so scared - terrified - when I was diagnosed. But, life has normalised, again, since then.
I too have AIH and I wanted to mention to you both that I also used to take Fosamax, which is meant to protect your bones while you take prednisone... Anyway, I just wanted to mention that to you both, so that if you want, you can ask your doctors about it...
How old were you when you were diagnosed? I was 25... I hope you are doing well... I know I was so scared - terrified - when I was diagnosed. But, life has normalised, again, since then.
Thanks for the advise about this drug you mentioned that protect your bones.
I will ask my doctor about it. I was diagnosed May 2007 just before I turned 38.
I know what you mean about being terrified. I also have ulcerative colitis and Hypothyroidism so when diagnosed with AIH I got really scared I have 3 chronic diseases and I'm only 38. The first thing that I thought of were my 2 boys. How will this effect me as a mother. It's been tough I kind of lose my patients but I am trying really hard to control myself. They are only 8 and 3.5 so it's hard to explain to them what I am going through. Well I have blood test tomorrow wish me luck.
I will ask my doctor about it. I was diagnosed May 2007 just before I turned 38.
I know what you mean about being terrified. I also have ulcerative colitis and Hypothyroidism so when diagnosed with AIH I got really scared I have 3 chronic diseases and I'm only 38. The first thing that I thought of were my 2 boys. How will this effect me as a mother. It's been tough I kind of lose my patients but I am trying really hard to control myself. They are only 8 and 3.5 so it's hard to explain to them what I am going through. Well I have blood test tomorrow wish me luck.
I know what you mean when you say your tired, however as tired as I am I can not get a lot of sleep. I have never read so many books like I have the past 6 months.
Sometimes I feel like I can eat and eat and eat. It's unbelievable I try to eat lots of vegetables and things that aren't too fattening. I also try to eat more at meal times so I won't feel like picking as much between meals.
Blood tests tomorrow wish me luck.
Sometimes I feel like I can eat and eat and eat. It's unbelievable I try to eat lots of vegetables and things that aren't too fattening. I also try to eat more at meal times so I won't feel like picking as much between meals.
Blood tests tomorrow wish me luck.
When I was first dx - Aug. this year- MedHelp did not have this forum. Am so glad to see this here.
As I mentioned in 9743km's thread I "belong" to another board that is strictly for AutoImmune Hepatits people - no viral alphabets. -:)
I am 65 yrs. and do not want to begin to imagine what it would be like having this and trying to raise a family. When my Gastro/Hep. Dr. started me on 40mg of Prednisone - it was not pleasant - had really bad mood/attitude swings. Also wanted to eat continually (NOT good). Would eat a huge meal (went from salad plate to large dinner plate) and 30minutes later want to eat again. Drinking water helps, some. Am now down to 20mg/da, and the appetite has settled back down - not what it was before all this but better. Hopefully my weight gain will slow now. I put on 20lbs is less than 2 months - yuk. Have the "moon face", no zits. Did have a case of shingles tho'.-:( Am having problems now with my joints - not old age thank you very much -:) - especially in my legs; have trouble walking sometimes, like they don;t want to hold me up or move like they should. As with everything else associated with this, there are good days and there are not so good (bad) days.
How did ya'lls blood tests come out? Do you have to wait long for the results? Usually get mine back in about 48hrs, max. My Dr. is soooooo cool - he will call me afterhours just to let me know the results of my labs and how to change my meds., rather than have his nurse call the next day.
I don't know if you do it or not, but it is a good idea to make sure that the Dr. sends you a copy of ALL of your labs. Then ;you can see for yourself and not have to rely on what they are telling you.
Well, will not post a "letter" this time. Am so glad this is here and hope ya'll post often. Make sure you let us know the lab results. -:)
Tmblwd
As I mentioned in 9743km's thread I "belong" to another board that is strictly for AutoImmune Hepatits people - no viral alphabets. -:)
I am 65 yrs. and do not want to begin to imagine what it would be like having this and trying to raise a family. When my Gastro/Hep. Dr. started me on 40mg of Prednisone - it was not pleasant - had really bad mood/attitude swings. Also wanted to eat continually (NOT good). Would eat a huge meal (went from salad plate to large dinner plate) and 30minutes later want to eat again. Drinking water helps, some. Am now down to 20mg/da, and the appetite has settled back down - not what it was before all this but better. Hopefully my weight gain will slow now. I put on 20lbs is less than 2 months - yuk. Have the "moon face", no zits. Did have a case of shingles tho'.-:( Am having problems now with my joints - not old age thank you very much -:) - especially in my legs; have trouble walking sometimes, like they don;t want to hold me up or move like they should. As with everything else associated with this, there are good days and there are not so good (bad) days.
How did ya'lls blood tests come out? Do you have to wait long for the results? Usually get mine back in about 48hrs, max. My Dr. is soooooo cool - he will call me afterhours just to let me know the results of my labs and how to change my meds., rather than have his nurse call the next day.
I don't know if you do it or not, but it is a good idea to make sure that the Dr. sends you a copy of ALL of your labs. Then ;you can see for yourself and not have to rely on what they are telling you.
Well, will not post a "letter" this time. Am so glad this is here and hope ya'll post often. Make sure you let us know the lab results. -:)
Tmblwd
How did the test results go? I agree completely w/tumbleweed1999 you must get a copy of all your test results. I get a copy faxed to me each time. Makes it easier to look back at your progression. I am down to 12.5 mg of prednisone and the appetite has gotten much better. I started at 40 mg as well, and I could of eaten the walls, if someone would of let me! Face is still a little puffy, but it is better. I think the summer makes it much worse as well. So hot and humid! That we swell even more. My next labs are Nov 16th, so I'm counting down the days, and wondering how yours went. Take Care!
Got my results and everything is great. My bilirubin direct is on the boarder but it's fine.
AST, ALT and GGT are all within the limits.
I actually see my results even before my doctor through the internet. I also have everything in my own file. Biopsy results blood tests everything. I have had medical students go through my file because it is better than my doctors.
I have to talk to m y doctor today hopefully he'll take the prednisone down a bit.
Well its not always easy as you all know. I feel bad for my kids some times, but always trying to make up for it. Take care.
AST, ALT and GGT are all within the limits.
I actually see my results even before my doctor through the internet. I also have everything in my own file. Biopsy results blood tests everything. I have had medical students go through my file because it is better than my doctors.
I have to talk to m y doctor today hopefully he'll take the prednisone down a bit.
Well its not always easy as you all know. I feel bad for my kids some times, but always trying to make up for it. Take care.
As I wrote blood tests came out fine. I know what you mean about the hot weather, where I come from most of the time it's warm, even when it's a bit cooler I'm still warm.
I'll let you know what my doctor says.
Good luck with your labs Nov. 16. Have you had any joint problems? I do in my wrist. I don't know if it is connected to AIH and the medication or not.
Take care.
I'll let you know what my doctor says.
Good luck with your labs Nov. 16. Have you had any joint problems? I do in my wrist. I don't know if it is connected to AIH and the medication or not.
Take care.
Congratulations! So glad all went well! So nice to see normal numbers, right? I'm Praying for that on the 16th, but not confident about it. I know my bilirubin is still sky high, I can just tell by my eyes, but they are running some extra tests to figure out if I am having some toxicity problems to the imuran. If that is the case, they will reduce it immediately. My other numbers were all normal last month, so lets Pray those at least stayed the same this time. No joint problems. But I do hear people talk about it. What is the GGT? I don't see that on any of my previous labs. Each month, I get 4 pages of results, but not GGT. Do you know what that tests? Maybe I'll ask my Dr. if he can add that? Again, so happy to hear someone received great news! I hope your prednisone can be reduced! You take care!
Spoke to my doctor prednisone is down to 15 mg and in 2 weekd 10 mg if all is well.
GGT is a test for the liver that usually tests alcohol abuse but also other things. I do not drink anymore, before this a glass of red wine every few days now maybe 1 every 2 weeks.
Hope your bilirubin goes down and soon let me know what's happening. My next labs are in a month.
Good luck with yours.
GGT is a test for the liver that usually tests alcohol abuse but also other things. I do not drink anymore, before this a glass of red wine every few days now maybe 1 every 2 weeks.
Hope your bilirubin goes down and soon let me know what's happening. My next labs are in a month.
Good luck with yours.
Been reading these post . I am really interested in why almost everyone is on prednisone? What's it for? Tumbleweed you mentioned ANA being high is an indicator of auto immune disease is ANA2 the same thing because mine was 1.1 (norms 0.1-0.9) and said positive . Can you help me understand this. I also have the joint pain everyone seems to have. So between 9743km and the rest of you hope you can help . cat33
Hi everyone. I'm currently in the process of AIH diagnosis. I have microscopic colitis and annoying acid reflux. I recently had labs run b/c I have been having joint pain that 'jumps' from place to place, sometimes lasting hours, sometimes for a couple days before moving to another spot. (Today is a good day though, NO joints feeling it) I also have had a sore throat off and on since Sept. 12th. My Crp and Esr were slightly elevated. My white count was 2.8 on the first draw and 3.0 a week later. My ANA was 1:640. My ALT was 271 the first draw and 188 a week later. My AST was 375 the first draw and 270 a week later.
I finally saw my GI two days ago. Previously I had been dealing with a rheumatologist who said that he thinks I probably have pallidromic rheumatism (hence the jumping joint pain) and AIH. He did say however, that it could still be a virus doing this. Well, the GI said he thinks it's AIH b/c of how high my ANA ratio is and the joint pain.
He sent me for an ultrasound yesterday, which I'll hopefully get the results of on Monday the 12th. On Monday I am also having another blood draw to check my LFT''s. GI said that if they are still elevated, we'll schedule a liver biopsy...I'm NOT looking forward to that. If my levels are close to normal he said we'll have to wait 4 weeks and check again.
The last couple days I've been feeling a lot bet, ie, no sore throat and very little/no joint pain. I keep thinking that it's still viral and working it's way out of my system. However, when I had the ultrasound done, it was quite sore/tender when the probe was over my liver....I suppose that's not a good thing!
Anyway, thanks for reading all of this. I'm wondering if anyone else had to go through a lot of unsure waiting for a diagnosis and what everyone thinks about my labs.
I'm just worried that my labs will be 'normal' Monday and it will take more of the waiting game to figure out exactly what is going on.
Oh, and to cat33, I've never hear of ANA2, but ANA is (as far as I've ever seen) reported as a titer, such as 1:40, 1:80, etc.
I finally saw my GI two days ago. Previously I had been dealing with a rheumatologist who said that he thinks I probably have pallidromic rheumatism (hence the jumping joint pain) and AIH. He did say however, that it could still be a virus doing this. Well, the GI said he thinks it's AIH b/c of how high my ANA ratio is and the joint pain.
He sent me for an ultrasound yesterday, which I'll hopefully get the results of on Monday the 12th. On Monday I am also having another blood draw to check my LFT''s. GI said that if they are still elevated, we'll schedule a liver biopsy...I'm NOT looking forward to that. If my levels are close to normal he said we'll have to wait 4 weeks and check again.
The last couple days I've been feeling a lot bet, ie, no sore throat and very little/no joint pain. I keep thinking that it's still viral and working it's way out of my system. However, when I had the ultrasound done, it was quite sore/tender when the probe was over my liver....I suppose that's not a good thing!
Anyway, thanks for reading all of this. I'm wondering if anyone else had to go through a lot of unsure waiting for a diagnosis and what everyone thinks about my labs.
I'm just worried that my labs will be 'normal' Monday and it will take more of the waiting game to figure out exactly what is going on.
Oh, and to cat33, I've never hear of ANA2, but ANA is (as far as I've ever seen) reported as a titer, such as 1:40, 1:80, etc.
Sounds like your going through all the same stuff that I'm sure many of us did in the beginning. I was feeling so good that I alsmost cancelled my Dr's appts. Thank God that I did not. My liver numbers were in the 1700's and had falled to the low 1000's on there own, so I was thinking I was doing better as well, but unfortunately, after the liver biopsy (which I did not think was bad at all) they did determine that AIH is what I have. Now, on the up side, it very well could be a viral hepatitis which does work its way out in approx 6 months. So it may be doing that for you. That would be great! But keep moving forward w/the testing so they can know for sure. And if its a viral hepatitis at least you can feel good that you went through the testing and you will get better on your own. Don't worry about the biopsy. It is so quick, and very simple. You'll do great. Its more of our own body working us up to it. Thats the scary part. I hope your biopsy goes as well as mine, and I hope they figure out what is wrong soon. The liver biopsy is really the only way to tell for 100% sure what it is. So push for that soon!
Thanks for the words of support, I'm feeling better about the concept of the liver biospy now.
I forgot to mention that I had Hep A,B,C labs done and they were all negative. I also had a Mono lab, negative as well.
Hopefully I'll have the ultrasound results tomorrow. Does anyone know, can an ultrasound pick up on inflammation?
I forgot to mention that I had Hep A,B,C labs done and they were all negative. I also had a Mono lab, negative as well.
Hopefully I'll have the ultrasound results tomorrow. Does anyone know, can an ultrasound pick up on inflammation?
Excuse me but I have to challenge you on your information. Where did you get information that "Viral Hepatitis does work it's way out in approx. 6 mos...." "....and you will get better on your own"???????? Viral Hepatitis is your A, B. & C Heps and do NOT go away on their own. There is a forum on this board - "Hepatitis Community" that maybe you and others should read. It takes some heavy duty treatment/drugs to try to rid your body of those viruses, and a lot longer than 6 months.
I don't mean to critize you but I would like to know where you got that kind of mis-information.
I don't mean to critize you but I would like to know where you got that kind of mis-information.
First off, a biopsy is a "piece of cake". If you have any pain at all it will be so minor that it's no worse than doing labs. Glad your ABC labs are neg. If you are dx (diagnosed) with AIH and your Dr. doesn't suggest getting the Hep. A/B vaccines, then make sure that you suggest it to him/her. It is something that all of us AIHers should have because of our lowered immune systems. Let us know how your US came out. k?
Tmblwd
Tmblwd
I'm with iloveigs - I don't know about ANA2. 'Guess I will have to "google" that one. ANA is an indicator of an autoimmune problem and then further tests narrow it down to which one(s).
Prednisone is an immunesuppressant steroid that the majority of AIHers are put on to start with to help stop the immune system from attacking itself, and to try to start the healing process. It will depend on the severity of the damage as to the dosage of the Prednisone. It usually starts with 40 - 60mg/day and then is reduced as quickly as possible to (over several months) to a "maintenance" dosage, avg. 10-12.5mg/da. Totally depends on how your body reacts to treatment.
Personally, I was started on 40mg/da on Aug. 15, this year and am now down to 20mg/da. My Dr. (a GI/Hep) has also just put me on another immunosuppressant called Azathioprine (aka Imuran) that allows us to drop the Prednisone down more, with less sx (side effects) and w/o lessening the suppression.
My suggestion is to "google", a lot -:)), read all the posts, check out other boards/forums, and make sure that you write down your quetions for your Dr., and keep posting! -:)
Tmblwd
Prednisone is an immunesuppressant steroid that the majority of AIHers are put on to start with to help stop the immune system from attacking itself, and to try to start the healing process. It will depend on the severity of the damage as to the dosage of the Prednisone. It usually starts with 40 - 60mg/day and then is reduced as quickly as possible to (over several months) to a "maintenance" dosage, avg. 10-12.5mg/da. Totally depends on how your body reacts to treatment.
Personally, I was started on 40mg/da on Aug. 15, this year and am now down to 20mg/da. My Dr. (a GI/Hep) has also just put me on another immunosuppressant called Azathioprine (aka Imuran) that allows us to drop the Prednisone down more, with less sx (side effects) and w/o lessening the suppression.
My suggestion is to "google", a lot -:)), read all the posts, check out other boards/forums, and make sure that you write down your quetions for your Dr., and keep posting! -:)
Tmblwd
Unfortunatly, my ultra sound did not pick up my inflammation. I had an ultra sound done immediately during the diagnosis period, and it showed my liver was fine. Unfortunately, it had some early cirrhosis, and it was loaded w/inflammation as well as AIH. So for me the ultra sound did nothing! The liver biopsy detected it immediately.
Tumbleweed: Viral hepatitis is not the A, B, or C hepatitis that I was referring to. It is a form of hepatitis that many people in our country are getting from unwashed foods, restaurant workers who do not clean there hands properly, and yes it works its way out in up to 6 months. When I first saw my regular Dr. he thought that is what I had, though all my A,B and C tests were negative. Thank God instead of sitting around and waiting for 6 months, he sent me to a gastro Dr., whose first thought was the same thing. They literally asked me a full page questionaire of foods I had eaten, where I had eaten, and sushi's, japanese restaurants, etc. It was crazy. A friend of mines husband had the same thing, and his Dr. told him to wait it out for a year and see if it was viral and could run its course. Trust me, it is real! Good Luck iloveigs and remember press for the liver biopsy. PIECE OF CAKE!!!!!!!
Tumbleweed: Viral hepatitis is not the A, B, or C hepatitis that I was referring to. It is a form of hepatitis that many people in our country are getting from unwashed foods, restaurant workers who do not clean there hands properly, and yes it works its way out in up to 6 months. When I first saw my regular Dr. he thought that is what I had, though all my A,B and C tests were negative. Thank God instead of sitting around and waiting for 6 months, he sent me to a gastro Dr., whose first thought was the same thing. They literally asked me a full page questionaire of foods I had eaten, where I had eaten, and sushi's, japanese restaurants, etc. It was crazy. A friend of mines husband had the same thing, and his Dr. told him to wait it out for a year and see if it was viral and could run its course. Trust me, it is real! Good Luck iloveigs and remember press for the liver biopsy. PIECE OF CAKE!!!!!!!
Hi everyone,
Thanks so much for all the input.
I'm wondering, if my LFT's are in the normal range tomorrow (12th), should I still push for the biospy right away?
If LFT's are normal, could there be detectable inflammation?
And what exactly is the ultrasound capable of showing?
Also, has anyone else had muscle fatigue? I've been having a strange sensation in my upper arms at night when I go to bed. What comes to mind to describe it is almost like weakness. I thought I read somewhere that this could be a symptom of AIH.
Thanks so much for all the input.
I'm wondering, if my LFT's are in the normal range tomorrow (12th), should I still push for the biospy right away?
If LFT's are normal, could there be detectable inflammation?
And what exactly is the ultrasound capable of showing?
Also, has anyone else had muscle fatigue? I've been having a strange sensation in my upper arms at night when I go to bed. What comes to mind to describe it is almost like weakness. I thought I read somewhere that this could be a symptom of AIH.
I do apologize - it is not something that I believe a lot of people are familiar with, including the Drs., obviously. If I may ask, are you in the States, or "another country"? -:) If you don't want to divulge that info. it is ok, just curious as to the way you said it. -:) How do they determine that it is "viral hep.", other than the ABC are all negative? Is there info. on this - again, guess I could "google" it. Thank you for answering so nicely. - When I came back in here and re-read my post it sounded a bit harsh and I really didn't mean for it to.
Tmblwd
Tmblwd
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