Guest guest Posted May 23, 2003 Report Share Posted May 23, 2003 Pat, Thank You very much for the kind words. Last night I finally went to bed, and prayed to God to show me what he wants me to do. Thank You, Carla Clara Clara, There is a lady that lives in Delano that does aftercare, and they say she is great.Sorry I don't remember what her name is,but someone on here should be able to help you. Dr.K will not want you going home,do call the hospital and talk to social service and see if they can help you. It will work out for you , just keep your faith and remember sometimes it is not in our time but Gods time. Good luck and God bless, keep us informed Pat in Taft Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 My son was diagnosed two years ago WITHOUT a biopsy...his Pedi GI dr is one of hte top 5 here on the east coast...this is what she speicalizes in.....should i now be questioning if she is WRONG? he is going for a biopsy Nov 15 to find out what stage he is at and if he will need a Tx. with no meds..his numbers were well up over 1500!!! jayne in nh > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 Thank you for responding. Yes, I have had test regularly (biliruben? test blood test) which at first was high I guess. At that time, about 2 years ago, I also had a biopsy of the liver that gave the diagnoses of "non alcoholic fatty liver cirrhosis". I have also had several auto immuno disease, such as diabetes, an occasional discoid lupus flareup, asthma, and who knows what else is the result of something I probably had all my life? Or have I ? Clara [ ] Clara Hi, Clara. Welcome to the group. Have you had anylab tests done recently?? Maybe you should suggest toyour GI doctor to do some blood work. If your liverenzymes are high, the doctor might test further to seeif you have AIH. The only way to confirm AIH isthrough a liver biopsy, but the blood work is astarting place.Good luckJudy C - OKC--- wrote:> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 My daughter was diganosed with AIH with no biospy. She responded immediately to medication within 12 hours, her ALT and AST had dropped by 500-600, they were originally high 2000, low 3000. I do agree thta if U are being treated with meds and ur bloodwork is STILL high, a liver biopsy should be done, which would have been my daughters case. Trish > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 Where are your ALT and AST levels at now? My daughter is being closely watched on her Neutrophil and White cell count now, her other levels, are all ok. Trish > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 Thanks these are great sites and I am reading and studying them. According to what I have learned just now is that AIH- must stand for AutoimuneHepatitis? According some of the info I remember my doctors telling me, and some of the things I have read, I do not have any form of hepatitis. But I sure have the symptoms of Autoimmune Disease, including symptoms of Rheumatoid Arthritis (30 yrs), Liver Cirrhosis, Discoid Lupus on occasion, Diabetes Type II, Asthma ( or is this different), some form of Anemia ( caused by loss of iron, they think it was due to bleeding internal polyp they removed ). I have not had to take Prednisone accept once for a short treatment, when my whole body broke out in red blotches ( Discoid Lupus ?). I am seeing several doctors. One is an Gastroentologist, the other is Hematologist and of course my regular primary care physician. I have also seen a Rheumatologist, an allergist and whom ever the symptoms require. My Bilirubin total, AST and ALT levels were within normal range the few last test I have taken. Maybe the trouble I am in right now is not so much created by the liver, but by all the meds and vitamins I am taking that is causing the digestive track problems, Acid stomach and bleeding, then loss of iron then deathly tired with anemia. Clara [ ] Clara have U looked at the links section in the group at all. Here are some here U can view by clciking on them.Trishhttp://www.emedicine.com/med/topic366.htmhttp://www.hallym.or.kr/~kdcp/chemistry/LiverFunction.htmhttp://www.niaid.nih.gov/publications/autoimmune/autoimmune.htmhttp://community-2.webtv.net/Lany25/CommonMedicalTests/http://www.nlm.nih.gov/medlineplus/encyclopedia.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 Clara Please forgive me, due to lack of sleep and being in school full time I have brain fog alot and Im not even suffering from a Liver Disease, my daughter is. Due to my lack of paying attention she tells me I need Prednisone. LOL Such a smart ass she is. I mis read that you have a 'fatty liver' and not AIH or a specific Liver Disease. Are all your doctors very much aware of what the others have prescribed for you to take? I am sure a combination of meds must be hard on your system, especially taking for a long period of time. Have U had a visit with all your doctors and gone over all your currents meds recently? In Ontario where I live, we have a wonderful Pharmicist in our town who will notify me if any meds we are taking dont mix well for Kelsey. Perhaps an 'inventory' needs to be taken of what U are currently on. I do feel over time all meds do need to be adjusted to your health. Im glad U are getting some good information from the group. Im not up to snuff on a fatty liver. So happy to know ur blood test results are good!! Trish > Thanks these are great sites and I am reading and studying them. > > According to what I have learned just now is that AIH- must stand for AutoimuneHepatitis? According some of the info I remember my doctors telling me, and some of the things I have read, I do not have any form of hepatitis. > > But I sure have the symptoms of Autoimmune Disease, including symptoms of Rheumatoid Arthritis (30 yrs), Liver Cirrhosis, Discoid Lupus on occasion, Diabetes Type II, Asthma ( or is this different), some form of Anemia ( caused by loss of iron, they think it was due to bleeding internal polyp they removed ). > > I have not had to take Prednisone accept once for a short treatment, when my whole body broke out in red blotches ( Discoid Lupus ?). > > I am seeing several doctors. One is an Gastroentologist, the other is Hematologist and of course my regular primary care physician. I have also seen a Rheumatologist, an allergist and whom ever the symptoms require. > > My Bilirubin total, AST and ALT levels were within normal range the few last test I have taken. Maybe the trouble I am in right now is not so much created by the liver, but by all the meds and vitamins I am taking that is causing the digestive track problems, Acid stomach and bleeding, then loss of iron then deathly tired with anemia. > > Clara > > > [ ] Clara > > > > have U looked at the links section in the group at all. Here are some > here U can view by clciking on them. > Trish > > http://www.emedicine.com/med/topic366.htm > > http://www.hallym.or.kr/~kdcp/chemistry/LiverFunction.htm > > http://www.niaid.nih.gov/publications/autoimmune/autoimmune.htm > > http://community-2.webtv.net/Lany25/CommonMedicalTests/ > > http://www.nlm.nih.gov/medlineplus/encyclopedia.html > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 Thanks for the encouragement, I am following through every test that is recommended. [ ] clara I have had AIH since the age of 14 and now am 50 without a liver biopsy. Just found out about cirrhosis and still hanging in there. Have been tested for all hepatitis titers which are negative. Due to the symptoms, etc., my family physician/hepatologist diagnosed this as AIH. I agree with everyone that should it be needed, then have it done. Try to stay at peace. God Bless You All Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 Trish No need to think you misunderstood, I am not sure what exactly I do have either so I cannot talk intelligently . I guess the doctors don't know either. I just reread the past reports( I try to get copies of all information, ) and on one of the test results it says they The lab?doctors?) cannot determine the cause for my liver problem becasue it is "not a clearcut hepatitis" ( or some such double talk ).. Well if they cannot determine it then it possibly could be....... Oh well. My gastroentologist feels the liver is under control at this time, if only I could get the rest of me under control. I am taking only Ursodiol for my liver ( and Milk Thistle because I want to, and none of the doctor not see any harm in me taking it ). I am taking only Glucosamine1000mg ( & Chondroitin) for the Rhumatoid Arthritis, and can only take very limited amount of pain med By the way, when I respond like I am now will everyone on the list read my reply or is it just sent to you? I am not all that good with these computer processes either! Clara [ ] Clara> > > > have U looked at the links section in the group at all. Here are some > here U can view by clciking on them.> Trish> > http://www.emedicine.com/med/topic366.htm> > http://www.hallym.or.kr/~kdcp/chemistry/LiverFunction.htm> > http://www.niaid.nih.gov/publications/autoimmune/autoimmune.htm> > http://community-2.webtv.net/Lany25/CommonMedicalTests/> > http://www.nlm.nih.gov/medlineplus/encyclopedia.html> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2004 Report Share Posted October 22, 2004 In a message dated 10/22/2004 1:28:00 AM Eastern Daylight Time, cshelton33@... writes: .. I am taking only Ursodiol for my liver Everyone gets your messages Clara. Ursodiol is mainly for itching and won't have much (if any) effect on your liver function. Man is that stuff expensive! Regards Elaine Long Island NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2004 Report Share Posted October 23, 2004 Everyone sees Ur reply Clara in the group. Trish > By the way, when I respond like I am now will everyone on the list read my reply or is it just sent to you? > I am not all that good with these computer processes either! > Clara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2004 Report Share Posted October 23, 2004 I am truly puzzled!! I was diagnosed with AIH almost a year ago and in March I was prescribed ursodiol in addition to the pred. and imuran. I had not suffered with any itching whatsoever! It was never fully explained why I had to start to take ursodiol along with the other meds. I assumed it had something to do with the fact that I had relapsed and my liver functions began to climb again. I do know it is a drug used to treat PBC but why I am on it I am not too sure. So I go to my specialist next week, and I will ask again why ursodiol?? And yes, it is VERY expensive. Thank goodness for my drug plan. Anybodyelse out there taking this drug? Kathy --- champk9@... wrote: > In a message dated 10/22/2004 1:28:00 AM Eastern > Daylight Time, > cshelton33@... writes: > . I am taking only Ursodiol for my liver > Everyone gets your messages Clara. Ursodiol is > mainly for itching and won't > have much (if any) effect on your liver function. > Man is that stuff expensive! > > Regards > Elaine > Long Island NY > ______________________________________________________________________ Post your free ad now! http://personals..ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2004 Report Share Posted October 24, 2004 I guess Ursodiol is not quite understood by anyone, as it is prescribed for seemingly different reason. I thought I was taking it because it had something to do with the fatty liver problem ( I have it, NASH, Non-Alcoholic Steatohepatitis ) and am taking 4 caps a day ( I believe they are 250 mg.?). I thought it somehow combines with the fat in the liver and removes it, but who knows ? Let us hear what your doctor says after you discuss it. Re: [ ] Re: Clara I am truly puzzled!! I was diagnosed with AIH almosta year ago and in March I was prescribed ursodiol inaddition to the pred. and imuran. I had not sufferedwith any itching whatsoever! It was never fullyexplained why I had to start to take ursodiol alongwith the other meds. I assumed it had something to dowith the fact that I had relapsed and my liverfunctions began to climb again. I do know it is adrug used to treat PBC but why I am on it I am not toosure. So I go to my specialist next week, and I willask again why ursodiol?? And yes, it is VERYexpensive. Thank goodness for my drug plan. Anybodyelse out there taking this drug?Kathy--- champk9@... wrote: > In a message dated 10/22/2004 1:28:00 AM Eastern> Daylight Time, > cshelton33@... writes:> . I am taking only Ursodiol for my liver > Everyone gets your messages Clara. Ursodiol is> mainly for itching and won't > have much (if any) effect on your liver function.> Man is that stuff expensive!> > Regards> Elaine> Long Island NY> ______________________________________________________________________ Post your free ad now! http://personals..ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2004 Report Share Posted December 29, 2004 Thanks for your kind response. How long have you been off prednisone? How has that been? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2004 Report Share Posted December 29, 2004 Dear , I am one of the very fortunate ones in that respect. I only took Prednisone for about 2 weeks in 2002 (and gained 10 lbs with my diabetes going crazy). Since then I have had two tiny recurrences of the problem, which was a discoid lupus break out( polkadots all over my upper body and face). Since then, I have been getting "normal" reading. I must confess, I am not really AIH or at least my gastroentologist refuses to call it that. He insists my problem is "fatty liver cirrhosis", but of course cannot tell me why I have such a disease, since I have never drank alcohol of any sort. I can count the number of drinks I had socially in the 70 years I have been on this earth. And why do I have diabetes? and why do I have lupus, and why do I have asthma?. OH, well, those are autoimmuno diseases, but I am not AIH. Doesn't really matter I guess. The Urso that I am taking with 4 capsules of Milk Thisle ( strenght 240mg per capsule) seem to be doing some good, things are not getting seriously worse in the last 4 years. Of course I have no idea if it is the Urso, the Milk Thisle or the change of diet. I am almost a vegeterian at this point, and it seems to make me feel good. I wish I could loose some weight, though. Or at least I am hoping I am not getting worse, as I saw him last month and he said everything was OK, but he has not sent me the test results report so I can exam all the numbers. I just called today to find out what happened to it! Re: [ ] Clara Thanks for your kind response. How long have you been off prednisone? How has that been? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2004 Report Share Posted December 30, 2004 In a message dated 12/30/2004 12:43:43 AM Eastern Standard Time, cshelton33@... writes: He insists my problem is "fatty liver cirrhosis", but of course cannot tell me why I have such a disease, since I have never drank alcohol of any sort. Fatty liver disease is a common problem among the Amazon species of parrots (yup I confess I'm a bird nut) and it's always diet related. Unless my guys are sneaking out at night and having a few beers.....uuuummm....I wouldn't put it past them, they are so darn smart! Regards Elaine Long Island NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2004 Report Share Posted December 31, 2004 Two weeks of prednisone - that would be a dream! You are lucky! Years ago I got a fatty liver dx - perhaps thats truly where everything started. I am on 5mg of prednisone and 25mg of Imuran. It would be my dream not to take any of it and see how my blood sugars react. I have two aunts with diabetes and my sister has diabetes. They are quite miserable and do not paint a pretty picture for me of life with diabetes. One aunt is even missing a leg. I do take prode in the fact that I eat well and I exercise. So one can dream, can't they? Thanks for your response, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2005 Report Share Posted November 11, 2005 Clara wrote: Sometimes when I lie downI feel the throbbing of the veins to my head so bad that I cannot sleep. I have had a test on my carotid artery ( the arteries that feed your head on both side of your neck ?) and it came back oK. I am seeing the doctor next week, and will be persuing the question of the pumping of my heart. Maybe I will insist on seeing a cardiologist. Re: the above..... I have had that throbbing in the back of my head also when I lie down at night, sometimes worse that othertimes. I have also had my caortid arteries checked and the results were good. I have found that the pounding has been a little less since my thyroid problem has been stabilized. (Although I still have many sleepless nights and the pounding doesn't help.) Jo Lynn, previously we briefly discussed insomnia. Well, I have gone in for a sleep study. What amazed me was that I needed to sleep for a period of six hours in order to be observed properly. I told them if I could sleep for six hours, I wouldn't need to go to a sleep study. ....Well, I had to take a sleeping pill in order to sleep. (I still awakened twice during that time.) The only results that came from the study was that I do not have sleep apnea or restless leg syndrome. I am now waiting to see what my doctor suggests I do next. Sleeping pills do work, but I just hate to depend on them. Ellie AIH April 2005 FareChase - Search multiple travel sites in one click. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2009 Report Share Posted July 10, 2009 Clara Watch the CHF, let docs know Hey I can relate on walking like an old lady Kathy Quote Link to comment Share on other sites More sharing options...
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