Aa
Autoimmune Hepatitis, Adult Onset, Male
I had a short brief with AIH when I was 23. I never got treatment. It went away. Then about 3 years back, at age 41 for no reason I got pericarditis, followed by Pneumonia, then polymyositis, and finally asthma. I have no previous mediacal on any of these. I eat good, exercise, stay slim, and am chiropractor, so always followed the healthy road. I am currently taking 10mg. prednisone daily.
I actually only have one real big problem. Since this all started I have had severe asthma. I mean real severe. I have to take a portable nebulizer with me whereever I go. I use a bottle of meptin once a month 30ml. I take fulltide, 800mcgdaily, serevent 200mcg daily, and 800theophyline daily. If I don't move I can almost not have asthma, but as soon as I move, meaning walking etc, it returns.
My questions 3:
1. The doctors here in Japan tell me Asthma has nothing to do with AIH. I never had it at all before the AIH. I think they are related. Is there a referrence showing such?
2. Is there anything I can do to make a serious dent in my asthma? I have had IV's of amynophalene (SPelling?)and when I up my oral steroids or mega dose on the fulltied I do good. But that seems to be a bit hard in the long run on my body isnt it? Would weekly amynophyline IV'S be a good idea?
3. Since I am male, normally quite healthy, this seems a bit weird to get this disease. Is it possible there is some new or different approach that would be worth trying, for example the 3 month zythromax at 750mg per week program recommended by Dr. Hahn http://www.dean.org/researchers
I actually only have one real big problem. Since this all started I have had severe asthma. I mean real severe. I have to take a portable nebulizer with me whereever I go. I use a bottle of meptin once a month 30ml. I take fulltide, 800mcgdaily, serevent 200mcg daily, and 800theophyline daily. If I don't move I can almost not have asthma, but as soon as I move, meaning walking etc, it returns.
My questions 3:
1. The doctors here in Japan tell me Asthma has nothing to do with AIH. I never had it at all before the AIH. I think they are related. Is there a referrence showing such?
2. Is there anything I can do to make a serious dent in my asthma? I have had IV's of amynophalene (SPelling?)and when I up my oral steroids or mega dose on the fulltied I do good. But that seems to be a bit hard in the long run on my body isnt it? Would weekly amynophyline IV'S be a good idea?
3. Since I am male, normally quite healthy, this seems a bit weird to get this disease. Is it possible there is some new or different approach that would be worth trying, for example the 3 month zythromax at 750mg per week program recommended by Dr. Hahn http://www.dean.org/researchers
grant, ROTFL !
when I first stepped in here, I was writing that sometimes my liver troubles give me the feeling that I'm living on planet mars (as few "normal" people understand astenia, brain fog, etc.) now, I think that having liver problems in japan could drive me reeeeeally crazy!!!
have a nice trip home and a good thanksgiving. a little immersion in your origins - who knows what impression you'll receive, seven years are a pretty long time...
anna
when I first stepped in here, I was writing that sometimes my liver troubles give me the feeling that I'm living on planet mars (as few "normal" people understand astenia, brain fog, etc.) now, I think that having liver problems in japan could drive me reeeeeally crazy!!!
have a nice trip home and a good thanksgiving. a little immersion in your origins - who knows what impression you'll receive, seven years are a pretty long time...
anna
great, pattie !
I'm happy to hear about your good test results.
yeah, I have never been a workaholic in the way you describe it, but I can guess your work must have been fascinating - you mentioned what your job was. sure, risky and hectic and very committing.
keeping a family can be a challenge as well, sometimes :-)))
but sure it is rewarding and the fact of savouring the love of your dear ones is a blessing... your words sound very wise.
all the best to you all - I'll always be happy to come across you around here.
anna
I'm happy to hear about your good test results.
yeah, I have never been a workaholic in the way you describe it, but I can guess your work must have been fascinating - you mentioned what your job was. sure, risky and hectic and very committing.
keeping a family can be a challenge as well, sometimes :-)))
but sure it is rewarding and the fact of savouring the love of your dear ones is a blessing... your words sound very wise.
all the best to you all - I'll always be happy to come across you around here.
anna
You are a very kind and considerate lady! I did recently have more tests. So sweet of you to remember. Most turned out better and none where worse. So far so good.
:-)
P.
:-)
P.
Enbrel cost me (my insurance company actually) $1435.88 per month. That is a series of 8 shots which I take 2 per week. But Enbrel is getting ready to go to a once a week shot. I've already got the newsletter telling me that but of course I don't know what it will do to the price. Hopefully get it down some.
I started Enbrel when it was in testing stages. Was involved with the manufacture and kept records for them and stuff so got some of my treatment for free. But once it approved I had to start paying. I keep thinking the price will go down on the stuff as it becomes more known and used. Like microwaves and waterbeds. ha!
Good luck to you Grant. I sure hope your Thanksgiving trip over here will help you.
Do you mind telling me WHY you are in Japan??? And how high are your ALT and AST enzymes? Did you have the biopsy? HOW do you know you have AIH?
P.
I started Enbrel when it was in testing stages. Was involved with the manufacture and kept records for them and stuff so got some of my treatment for free. But once it approved I had to start paying. I keep thinking the price will go down on the stuff as it becomes more known and used. Like microwaves and waterbeds. ha!
Good luck to you Grant. I sure hope your Thanksgiving trip over here will help you.
Do you mind telling me WHY you are in Japan??? And how high are your ALT and AST enzymes? Did you have the biopsy? HOW do you know you have AIH?
P.
Gee ... I must have really made myself sound in bad shape. Ha! Sorry about my complaining, Guys. Didn't mean too. My life really isn't that bad. In many ways my AI troubles have been a lifesaver. I didn't have any AI troubles as a child except the JRA and allergies. All the other bad stuff just arrived in the last 5 years.
Strange as it may sound ... I thank God for giving me a disease that would slow me down enough to make me stop and smell the roses as they say. I was a workaholic. (I am still I guess - Do you ever get OVER an addiction??? - NO!) I was working 16 - 20 hours a day. Loved it. And was very, very good at my job. But I was missing a wonderful world full of blessings, and destroying my marriage to a wonderful man, and missing out on the life of my swiftly growing son - all without even knowning it. Yes, we lost a lot of material things through all this, but it was sure worth it.
So ... when I get bummed out now and tired of being sick, I just try to remind myself of all the good things added to my life since I got sick and don't think about the bad stuff. After all .. my life now consist of no responsibilities except getting one meal a day for my family, keeping a half way decent house and sleeping all I want. What more could you ask for??? I am truly blessed!
Everyone keep your head up - even when you have to use your hands to hold it up. The world looks MUCH better level.
P.
Strange as it may sound ... I thank God for giving me a disease that would slow me down enough to make me stop and smell the roses as they say. I was a workaholic. (I am still I guess - Do you ever get OVER an addiction??? - NO!) I was working 16 - 20 hours a day. Loved it. And was very, very good at my job. But I was missing a wonderful world full of blessings, and destroying my marriage to a wonderful man, and missing out on the life of my swiftly growing son - all without even knowning it. Yes, we lost a lot of material things through all this, but it was sure worth it.
So ... when I get bummed out now and tired of being sick, I just try to remind myself of all the good things added to my life since I got sick and don't think about the bad stuff. After all .. my life now consist of no responsibilities except getting one meal a day for my family, keeping a half way decent house and sleeping all I want. What more could you ask for??? I am truly blessed!
Everyone keep your head up - even when you have to use your hands to hold it up. The world looks MUCH better level.
P.
hi cuteous
an update about my computer problems. my old mac collapsed a few days ago (the cable got broken), but I have been offered a very good portable pc for a very good price (compaq presario 1700, 2nd hand for 300
an update about my computer problems. my old mac collapsed a few days ago (the cable got broken), but I have been offered a very good portable pc for a very good price (compaq presario 1700, 2nd hand for 300
of course the asthma forum was most appropriate... I hadn't even noticed it was there!
I discussed the environmental issue with my hepatologist some time ago. he has been working in london for some years. he says that my problem (autoimmune cholangitis) is way more common in the UK than here.in his opinion the environment must play a role and supports this claim with the fact that in the indian continent my disease is practically unknown. but the indian population who lives in the uk shows the same percentage of morbility than the others.
how is it living in japan ? they seem crazy people to me :-)))
all the best
anna
I discussed the environmental issue with my hepatologist some time ago. he has been working in london for some years. he says that my problem (autoimmune cholangitis) is way more common in the UK than here.in his opinion the environment must play a role and supports this claim with the fact that in the indian continent my disease is practically unknown. but the indian population who lives in the uk shows the same percentage of morbility than the others.
how is it living in japan ? they seem crazy people to me :-)))
all the best
anna
Thanks for your comments. Here in Japan they don't use Cromolyn sodium. I Have been thinking about ordering from overseas. Maybe it is time. I have been checked for allergies. One doctor, and well said, told my I am allergic to myself. That sums up Autoimmune Hepatitis quite well. Other than that, no allergies. All my problems began 2 years after coming to Japan, so I think one big possibility is what you said with regards to your daughter leaving Long Island. Maybe I just need to get out of here? How long did it take her before she got well after leaving LI? I am going home next week for thanksgiving. I just wonder if one week is enough to see any changes for the better, of course, assuming the problem is related to environment.
Thanks,
Grant
Thanks,
Grant
Hi Grant - Sorry you are having problems - Sounds like you have a mess. I don't know if I can help, but wanted to try. I certainly can't talk medical talk with you, but thought a little of my history might help to confirm your thoughts, or not.
I am 39 White Female. Born and raised in Southern Missouri - USA. I have been diagnosed AIH since 2000. I currently have very little allergy / breathing problems now, BUT used to actually live in an O2 bubble around my bed for several weeks out of the year so I could breathe. Fall usually as ragweed and goldenrod pollen is terrible for me. Of course all the day to day stuff created breathing problems too, but my body just couldn't take it when the fall pollens were added.
Currently I am taking Allegra 180 and of course Prednisone for the AIH. Also taking an injection drug called Enbrel. It is basically a human growth hormone from what I understand. You can't afford the stuff if you don't have insurance. Thank the Good Lord above for my wonderful husband and his good job.
Once I started the Enbrel I've been much better in all areas. Enbrel acts as a sponge for excess T-cells and gets them out of your body. As a doc you probably know what T-cells are and that they are the main problem with us AI people.
I don't know if Enbrel is available in Japan or not. Also ... the only way I got a scrip for that was through my Rheumatology Doctor. I have RA also. As far as I know the Enbrel is approved for RA and I heard just approved for some autoimmune skin disease also.
Another note ... during the time I lived in the bubble, I moved areas (went to Western Oklahoma) and did much better. I agree the enviroment you are in could possibly be inhancing your trouble although I have absolutely no idea what Japan is like.
I wish you luck. I will be happy to answer any questions I can, but it sounds like you are much more knowledgeable than I am. If you wish you may contact me at [email protected]. Please put Autoimmune Hepatitis in the Subject line.
God Bless,
Pattie
I am 39 White Female. Born and raised in Southern Missouri - USA. I have been diagnosed AIH since 2000. I currently have very little allergy / breathing problems now, BUT used to actually live in an O2 bubble around my bed for several weeks out of the year so I could breathe. Fall usually as ragweed and goldenrod pollen is terrible for me. Of course all the day to day stuff created breathing problems too, but my body just couldn't take it when the fall pollens were added.
Currently I am taking Allegra 180 and of course Prednisone for the AIH. Also taking an injection drug called Enbrel. It is basically a human growth hormone from what I understand. You can't afford the stuff if you don't have insurance. Thank the Good Lord above for my wonderful husband and his good job.
Once I started the Enbrel I've been much better in all areas. Enbrel acts as a sponge for excess T-cells and gets them out of your body. As a doc you probably know what T-cells are and that they are the main problem with us AI people.
I don't know if Enbrel is available in Japan or not. Also ... the only way I got a scrip for that was through my Rheumatology Doctor. I have RA also. As far as I know the Enbrel is approved for RA and I heard just approved for some autoimmune skin disease also.
Another note ... during the time I lived in the bubble, I moved areas (went to Western Oklahoma) and did much better. I agree the enviroment you are in could possibly be inhancing your trouble although I have absolutely no idea what Japan is like.
I wish you luck. I will be happy to answer any questions I can, but it sounds like you are much more knowledgeable than I am. If you wish you may contact me at [email protected]. Please put Autoimmune Hepatitis in the Subject line.
God Bless,
Pattie
sorry about the demise of your mac. I recently found out that my 7200 series, which I thought could not connect to the internet, can connect through ethernet instead of dial up. all these years it was sitting in my boyfriends basement, and he decided to play with it recently. So, now I got my old my mac, the imac, and old Pc, and don't need them all.
If any of your friends come to visit you, they can bring you my old mac...for when windows annoys you, which is often in my case//\
at least you are back online!!
If any of your friends come to visit you, they can bring you my old mac...for when windows annoys you, which is often in my case//\
at least you are back online!!
Thanks so much for responding. Everyone is quite helpful here. Nice feeling. You are correct regarding where to post. I reposted my question in the asthma section and already got one answer.
Thanks again
Thanks again
just to say that I am so sorry to read such problems you have. you have been so helpful and nice when I was upset, I appreciated your words deeply. you have had some tests recently: I hope everything will turn out fine. I wish you the best possible outcome, and the strength and patience necessary to reach it.
anna
anna
"doesn't seem likely at the moment" that I'll get your mac! (windows has *already* annoyed me pretty much...)
Again thanks for the help. I will be in the U.S. for a week this year for thanksgiving. I havent returned home in 7 years so this is a chance to see if the environment is related. It may not be long enough to find out.
Japan? It is a crazy country. I like a lot of things about it, but as far as I am concerned I left Earth and landed on Mars. Things that I always took for granted as "Correct", or absolutely white, not black, to use the saying, are not really "white". For example, in American telling the truth, and being frank and honest are usually signs of good character. Here it can often be considered rude, direct, and intentionally misleading. It makes it difficult to decide "what is right."
Anyway, life is interesting.
Japan? It is a crazy country. I like a lot of things about it, but as far as I am concerned I left Earth and landed on Mars. Things that I always took for granted as "Correct", or absolutely white, not black, to use the saying, are not really "white". For example, in American telling the truth, and being frank and honest are usually signs of good character. Here it can often be considered rude, direct, and intentionally misleading. It makes it difficult to decide "what is right."
Anyway, life is interesting.
You sure had your troubles. I thought my breathing problems were bad. I have heard of enebryl. It is about $500 a month for the shot. The pharmacy I buy drugs from overseas told me about it. Japan is very slow on approving drugs. They don't allow it here yet, so I would have to pay cash. I can handle it one time, but monthly shots would be quite a drain.
I think in the end, I may just have to get out of this country and see if that doesn't fix things. By the way, I had RA for about 6 months a while back too. It "mysteriously" dissappeared. I think it was just another way of my AIH showing its ugly head.
Thanks again for your help
I think in the end, I may just have to get out of this country and see if that doesn't fix things. By the way, I had RA for about 6 months a while back too. It "mysteriously" dissappeared. I think it was just another way of my AIH showing its ugly head.
Thanks again for your help
thanks for the offer, cutie... it doesn't seem likely at the moment, but one never knows ! :-)
I would not doubt if one autoinmune event can be related to another. both asthma and AIH are autoimmune illnesses. When I took my daughter to a research hospital here in NY, they were experimenting with controlling allergies to control asthma. Intal is now available for the nebulizer. Cromolyn sodium has been a blessing in preventing t cell reactions in my child. They are also using Advair and Singulair to prevent attacks. I don't know if they are available where you are. Have you been check for allergies? they are a big reason for URI problems. Also, gastrointestinal disturbanceds like GERD are related to asthma. I agree with you, once your immune system, overreacts in one organ or system, what keeps it from doing it to other systems?
hope you find some answers. My daughter is stable with the cromolyn sodium, and my other daughter stopped having attacks when she moved from Long Island, NY. it might have been environmental, in her case.
best to you
hope you find some answers. My daughter is stable with the cromolyn sodium, and my other daughter stopped having attacks when she moved from Long Island, NY. it might have been environmental, in her case.
best to you
hi grant,
sorry to hear about your troubles.
I have autoimmune liver problems, although not AIH. your questions are very technical, so they are really meant for a doctor. here you can post a question for doctors paying a fee of 16 $, if I remember well. go look at the general medhelp page, you'll find the "forums" button, then go on "gastroenterology", that is a Q. & A. service with professionals' opinion. I found it helpful. the ARCHIVES are packed of information as well, I spent days studying there.
I think I can understand how you feel, having lived the healthy way so far, and suddenly finding yourself with a load of problems and heavy medicines. I am currently taking prednisone too: luckily my docs have recently told me that I can gradually reduce it to zero, but I tell you, I have had a strong resistance against this drug and its side effects. just a few weeks ago I was almost choosing to stop it no matter the disease... people on this patient forum have helped me a lot in that moment and in others.
hope you will find the help you need. hold in there, and let me know how you are doing, if you feel like.
anna
sorry to hear about your troubles.
I have autoimmune liver problems, although not AIH. your questions are very technical, so they are really meant for a doctor. here you can post a question for doctors paying a fee of 16 $, if I remember well. go look at the general medhelp page, you'll find the "forums" button, then go on "gastroenterology", that is a Q. & A. service with professionals' opinion. I found it helpful. the ARCHIVES are packed of information as well, I spent days studying there.
I think I can understand how you feel, having lived the healthy way so far, and suddenly finding yourself with a load of problems and heavy medicines. I am currently taking prednisone too: luckily my docs have recently told me that I can gradually reduce it to zero, but I tell you, I have had a strong resistance against this drug and its side effects. just a few weeks ago I was almost choosing to stop it no matter the disease... people on this patient forum have helped me a lot in that moment and in others.
hope you will find the help you need. hold in there, and let me know how you are doing, if you feel like.
anna
Thanks for the comment. I think I misunderstood. I found this forum from a doctors answer to a question from a person here and thought I would get an answer like that. Being in Japan, the Japanese Doctors don't really think or say much about a disease. They just run things like computers. Disease A = Treatment A, end of subject. Do you know where I go for this kind of support? I am willing to spend money if needed. Heck I already spend $400/mo on drugs.
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