Guest guest Posted July 22, 1999 Report Share Posted July 22, 1999 Did you have any physical symptoms? J >From: LARancourt@... >Reply- onelist > onelist >Subject: Re: [ ] New member >Date: Thu, 22 Jul 1999 22:16:07 EDT >MIME-Version: 1.0 >From errors-165537-4064-shireen42 Thu Jul 22 19:17:30 1999 >Received: from [209.207.164.225] by hotmail.com (2.1) with ESMTP id >MHotMailB9611BBA00DDD82197A2D1CFA4E1107F0; Thu Jul 22 19:17:30 1999 >Received: (qmail 2149 invoked by alias); 23 Jul 1999 02:18:18 -0000 >Received: (qmail 2046 invoked from network); 23 Jul 1999 02:18:16 -0000 >Received: from unknown (HELO imo15.mx.aol.com) (198.81.17.5) by >pop.onelist.com with SMTP; 23 Jul 1999 02:18:16 -0000 >Received: from LARancourt@... by imo15.mx.aol.com (IMOv20.25) id >hBAEa06414 (322) for < onelist>; Thu, 22 Jul 1999 >22:16:13 -0400 (EDT) >Message-ID: <cd596037.24c92a67@...> >X-Mailer: AOL 4.0 for Windows 95 sub 13 >Mailing-List: list onelist; contact > -owneronelist >Delivered-mailing list onelist >Precedence: bulk >List-Unsubscribe: <mailto: -unsubscribeONElist> > >From: LARancourt@... > >Hi everyone, my name is and I have just been reading all of the >messages >the last few days, and it is very interesting. I am 32 years old and was >just diagnosed last week with what my doctor calls Autoimmune Cholangitis. >I >haven't seen that discussed by anyone yet, it appears most have Autoimmune >Hepatitis. It was explained to me that my disease is actually a >combination >of AIH, PSC, and PBC. >My reaction to medications may narrow that down, time will tell. I am >actually very healthy, the only reason I even found out about this problem >was because of a blood test for life insurance that showed extremely high >liver function tests. I hope I am lucky that it may have been caught >early, >although I do have liver damage surrounding my bile ducts according to the >ultrasound and liver biopsy. My ERCP showed that my bile ducts are ok. >I am taking 30mg of prednisone and will have my blood checked every month >for >the first three months to see how my counts respond. I really appreciate >the >suggestion that was made to get copies of all the test results and track >them. Its easy to start that now, and I'm sure it will lead to a better >understanding in the future, so thanks for the idea. >If I don't respond to the prednisone as my doctor would like, he will add >in >another drug called actigal (sp?). >I don't know how long it takes for the side effects of pred. to appear, but >so far so good after 6 days. I actually find that I have not much of an >appetite, but I think thats because I am determined to do everything I can >to >not gain weight! The nutritional advice is great, keep it coming. >After reading many of the stories of sickness, I feel fortunate that I am >still feeling healthy, so I am trying my hardest to get in the best and >healthiest shape of my life. I am eating healthy meals and exercising, >hoping that it will help in the long run. >I am just realizing how much there is unknown about liver disease, its >quite >alarming. I have no idea what my prognosis is at this point, I guess it >just >depends on how quickly the disease progresses through my liver. >I would be curious to know long many of you have been ill. Its really >difficult to try and plan to have children when you really don't know how >long you will be healthy for. I guess you just can't plan your life around >the disease, and that I am starting to learn. > >I would really appreciate any input, thoughts, and advice. And if anyone >is >familiar with my diagnosis, I would be real interested to know that too. > >Thanks for this opportunity! >LARancourt@... () > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 1999 Report Share Posted July 22, 1999 Hi everyone, my name is and I have just been reading all of the messages the last few days, and it is very interesting. I am 32 years old and was just diagnosed last week with what my doctor calls Autoimmune Cholangitis. I haven't seen that discussed by anyone yet, it appears most have Autoimmune Hepatitis. It was explained to me that my disease is actually a combination of AIH, PSC, and PBC. My reaction to medications may narrow that down, time will tell. I am actually very healthy, the only reason I even found out about this problem was because of a blood test for life insurance that showed extremely high liver function tests. I hope I am lucky that it may have been caught early, although I do have liver damage surrounding my bile ducts according to the ultrasound and liver biopsy. My ERCP showed that my bile ducts are ok. I am taking 30mg of prednisone and will have my blood checked every month for the first three months to see how my counts respond. I really appreciate the suggestion that was made to get copies of all the test results and track them. Its easy to start that now, and I'm sure it will lead to a better understanding in the future, so thanks for the idea. If I don't respond to the prednisone as my doctor would like, he will add in another drug called actigal (sp?). I don't know how long it takes for the side effects of pred. to appear, but so far so good after 6 days. I actually find that I have not much of an appetite, but I think thats because I am determined to do everything I can to not gain weight! The nutritional advice is great, keep it coming. After reading many of the stories of sickness, I feel fortunate that I am still feeling healthy, so I am trying my hardest to get in the best and healthiest shape of my life. I am eating healthy meals and exercising, hoping that it will help in the long run. I am just realizing how much there is unknown about liver disease, its quite alarming. I have no idea what my prognosis is at this point, I guess it just depends on how quickly the disease progresses through my liver. I would be curious to know long many of you have been ill. Its really difficult to try and plan to have children when you really don't know how long you will be healthy for. I guess you just can't plan your life around the disease, and that I am starting to learn. I would really appreciate any input, thoughts, and advice. And if anyone is familiar with my diagnosis, I would be real interested to know that too. Thanks for this opportunity! LARancourt@... () Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 1999 Report Share Posted July 23, 1999 Welcome , just jump right in with questions, and someone will come along and answer them, I am new too and this is a great place to be. Lynn in Wa. AIH LARancourt@... wrote: > From: LARancourt@... > > Hi everyone, my name is and I have just been reading all of the messages > the last few days, and it is very interesting. I am 32 years old and was > just diagnosed last week with what my doctor calls Autoimmune Cholangitis. I > haven't seen that discussed by anyone yet, it appears most have Autoimmune > Hepatitis. It was explained to me that my disease is actually a combination > of AIH, PSC, and PBC. > My reaction to medications may narrow that down, time will tell. I am > actually very healthy, the only reason I even found out about this problem > was because of a blood test for life insurance that showed extremely high > liver function tests. I hope I am lucky that it may have been caught early, > although I do have liver damage surrounding my bile ducts according to the > ultrasound and liver biopsy. My ERCP showed that my bile ducts are ok. > I am taking 30mg of prednisone and will have my blood checked every month for > the first three months to see how my counts respond. I really appreciate the > suggestion that was made to get copies of all the test results and track > them. Its easy to start that now, and I'm sure it will lead to a better > understanding in the future, so thanks for the idea. > If I don't respond to the prednisone as my doctor would like, he will add in > another drug called actigal (sp?). > I don't know how long it takes for the side effects of pred. to appear, but > so far so good after 6 days. I actually find that I have not much of an > appetite, but I think thats because I am determined to do everything I can to > not gain weight! The nutritional advice is great, keep it coming. > After reading many of the stories of sickness, I feel fortunate that I am > still feeling healthy, so I am trying my hardest to get in the best and > healthiest shape of my life. I am eating healthy meals and exercising, > hoping that it will help in the long run. > I am just realizing how much there is unknown about liver disease, its quite > alarming. I have no idea what my prognosis is at this point, I guess it just > depends on how quickly the disease progresses through my liver. > I would be curious to know long many of you have been ill. Its really > difficult to try and plan to have children when you really don't know how > long you will be healthy for. I guess you just can't plan your life around > the disease, and that I am starting to learn. > > I would really appreciate any input, thoughts, and advice. And if anyone is > familiar with my diagnosis, I would be real interested to know that too. > > Thanks for this opportunity! > LARancourt@... () > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 1999 Report Share Posted July 23, 1999 Hi , Welcome to the list! Your E-mail really interested me as I have never heard of Autoimmune cholangitis. I did a little research and found the following info which i hope you will find useful:- Autoimmune cholangitis (AC) is a recently proposed entity that describes a specific group of patients presenting overlapping features of primary biliary cirrhosis (PBC) and autoimmune hepatitis. The disease is characterized by dinical cholestasis, high titer antinuclear antibody, negative antimitochondrial antibody, and histologically, findings of PBC coexisting with varying degrees of parenchymal inflammation. Would you mind telling me a little about your situation, such as which doctor diagnosed you, what your symptoms and diagnostics are, etc. Thanks, And again, welcome, Elena --- LARancourt@... wrote: > From: LARancourt@... > > Hi everyone, my name is and I have just been > reading all of the messages > the last few days, and it is very interesting. I am > 32 years old and was > just diagnosed last week with what my doctor calls > Autoimmune Cholangitis. I > haven't seen that discussed by anyone yet, it > appears most have Autoimmune > Hepatitis. It was explained to me that my disease > is actually a combination > of AIH, PSC, and PBC. > My reaction to medications may narrow that down, > time will tell. I am > actually very healthy, the only reason I even found > out about this problem > was because of a blood test for life insurance that > showed extremely high > liver function tests. I hope I am lucky that it may > have been caught early, > although I do have liver damage surrounding my bile > ducts according to the > ultrasound and liver biopsy. My ERCP showed that my > bile ducts are ok. > I am taking 30mg of prednisone and will have my > blood checked every month for > the first three months to see how my counts respond. > I really appreciate the > suggestion that was made to get copies of all the > test results and track > them. Its easy to start that now, and I'm sure it > will lead to a better > understanding in the future, so thanks for the idea. > If I don't respond to the prednisone as my doctor > would like, he will add in > another drug called actigal (sp?). > I don't know how long it takes for the side effects > of pred. to appear, but > so far so good after 6 days. I actually find that I > have not much of an > appetite, but I think thats because I am determined > to do everything I can to > not gain weight! The nutritional advice is great, > keep it coming. > After reading many of the stories of sickness, I > feel fortunate that I am > still feeling healthy, so I am trying my hardest to > get in the best and > healthiest shape of my life. I am eating healthy > meals and exercising, > hoping that it will help in the long run. > I am just realizing how much there is unknown about > liver disease, its quite > alarming. I have no idea what my prognosis is at > this point, I guess it just > depends on how quickly the disease progresses > through my liver. > I would be curious to know long many of you have > been ill. Its really > difficult to try and plan to have children when you > really don't know how > long you will be healthy for. I guess you just > can't plan your life around > the disease, and that I am starting to learn. > > I would really appreciate any input, thoughts, and > advice. And if anyone is > familiar with my diagnosis, I would be real > interested to know that too. > > Thanks for this opportunity! > LARancourt@... () > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 1999 Report Share Posted July 23, 1999 Hello again , I just found some more info which you may find interesting. The term cholangitis or autoimmune cholangiopathy is applied to patients with a disease similar to primary biliary cirrhosis because of its clinical and histologic characteristics but in whom there is a repeated absence of antimitochondrial antibodies and, by the contrary, the presence of antinuclear antibodies. The initial description of these cases was carried out in 1987. Good response was observed to treatment with glucocorticoids in these first cases and others described later. A series of 13 female patients with features of autoimmune cholangitis diagnosed from 1987 to 1993 in the Hospital Clinic i Provincial from Barcelona, Spain, is retrospectively reviewed. These patients were compared with 13 patients with primary biliary cirrhosis diagnosed on the basis of clinical and histologic criteria and the presence of antimitochondrial antibodies. No relevant clinical or histological differences were observed between the two groups of patients. Six patients with autoimmune cholangitis underwent treatment with glucocorticoids with unequal response, and in 5 cases ursodeoxycholic acid was administered with a slight analytical improvement being observed. According to these results and the current data of these patients, autoimmune cholangitis should be considered as a variety of primary biliary cirrhosis, the main characteristic of which would be the absence of antimitochondrial antibodies more than that of being a specific, independent disease. Hope it helps Elena === Elena AIH San Diego, CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 1999 Report Share Posted July 23, 1999 Gut 1997; 40: 440–442 440 Leading article Autoimmune cholangitis Autoimmune cholangitis is a term that has only recently appeared on the hepatology horizon and it may be best if the term were to be abandoned as its use has given rise to considerable confusion. Clearly the name infers inflam-mation of the bile ducts thought to be due to an auto-immune process. Primary biliary cirrhosis, primary sclerosing cholangitis, and graft versus host disease are all diseases of the bile ducts in which the pathogenesis is considered immune (often autoimmune) based. It is also possible that some drugs induce an immune mediated bile duct destruction and it has been postulated that viruses may do likewise. The name “immune cholangitis” was introduced first by Brunner et al 1 to describe a condition seen in three women (two were mother and daughter) who had liver disease which clinically, biochemically, and histologically seemed to be typical of primary biliary cirrhosis, except that the serum antimitochondrial antibody (AMA) test was nega-tive in all three; all three were antinuclear antibody (ANA) positive. Examinations of the bile ducts via endoscopic retrograde cholangiopancreatography (ERCP) disclosed no abnormalities. Treatment with prednisolone and aza-thioprine was said to be “successful”. The non-organ, non-species specific mitochondrial anti-body was first recognised as a hallmark for primary biliary cirrhosis in 1965 by et al.2 Over time it has become recognised that the inciting antigen(s) are located on the inner part of the mitochondrial membrane. The specific antigens have been further defined using western immuno-blotting techniques as being the 74 kDa E2 subunit of the pyruvate dehydrogenase complex (PDC-E2), the 52 kDa protein X, the 50 kDa branched chain 2-oxo-acid dehydrogenase complex (BCOADC-E2), the 48 kDa (2-oxoglutamate dehydrogenase complex (OGDC-E2), and the 41kDa E1a subunit PDC. However, most labora-tories still use the standard immunofluorescence tech-nique, which allows for single sample testing. Multiple samples are most easily tested with an enzyme linked immunosorbent assay (ELISA) using recombinant or purified antigens. The specificity of these tests has been assessed in healthy controls by Omagari et al,3 the sensitiv-ity of immunoblotting by Mutimer et al,4 and ELISA by Fussey et al.5 After the report of Brunner et al,1 Ben-Ari et al 6 described four more patients who seemed to have all the usual features of primary biliary cirrhosis but who also tested AMA negative even when using the sensitive immunoblotting method. These authors described their patients as having an autoimmune cholangiopathy because serum ANA and smooth muscle antibody (SMA) proved positive in all four cases. These patients were also treated with prednisolone with or without azathioprine and were shown to have at least short term biochemical and histo-logical improvement (although there was no change in bile duct damage). Once immunoflourescence testing for AMA detection was first introduced it was noted that about 5%–8% of patients with features otherwise typical of primary biliary cirrhosis tested negative.7 It was also noted in the early days of AMA testing that AMA was sometimes detected in the serum of patients with other forms of autoimmune liver disease.8 Similarly, the autoantibodies most commonly associated with autoimmune hepatitis – namely, ANA and SMA – were found in some patients who were AMA positive but who were otherwise thought from all the usual perspectives to have primary biliary cirrhosis.9 Now that primary sclerosing cholangitis can be diagnosed with absolute confidence via ERCP it has become recognised that these same non-organ, non-species specific auto-antibodies ANA and SMA are found in the serum of some patients with proven primary sclerosing cholangitis.10 Hence, confusion as to the exact diagnosis in some cases of presumed autoimmune liver disease is an old problem. In 1976 Geubel et al 11 suggested that a three month trial of prednisolone therapy may help to distinguish auto-immune hepatitis from primary biliary cirrhosis in those patients who had features of both diseases. The development of the highly sensitive and specific immunoblotting tests for AMA in the late 1980s might have been anticipated to clarify the definition of otherwise confusing cases of autoimmune liver disease. Thus we submitted serum samples from patients thought by all other criteria to have primary biliary cirrhosis (but who had been rejected from a therapeutic trial because their serum AMA tested negative by immunofluorescence), for AMA testing by immunoblotting. Seventeen of these 20 patients proved still to be AMA negative using this test.12 The clinical, biochemical, serological, and histological charac-teristics of these AMA negative cases were compared with AMA positive cases referred to the same therapeutic trial, matched for concentration of serum bilirubin. Certain other features distinguished the AMA positive and negative cases: the serum IgM concentrations were significantly lower in the AMA negative patients, and all had serum positive for ANA (often at high titres (1:160–1:1280)) whereas only three of the AMA positive patients were ANA positive. Similarly, more of the AMA negative cases were also SMA positive (seven of 17) compared with the AMA positive cases (one of 17). Aside from the ANA tests and IgM concentrations, these AMA positive and negative patients could not be distinguished. Their symptoms were comparable, the prevalence of other autoimmune diseases was no different, and their liver histology on needle biopsy (read by two independent pathologists blinded to AMA status) was indistinguishable. We coined the phrase “auto-immune cholangitis” to describe what is likely simply AMA negative primary biliary cirrhosis. Several other centres have reported similar cases: et al 13 described nine cases, and Lacerda et al 14 a further 35. Both et al 13 and Michieletti et al 12 performed serial testing for AMA by immunoblotting over several years. In all but one patient the AMA tests remained consistently negative. The Mayo group 14 also noted lower IgM concentrations in their patients and et al 13 and Leading articles express the views of the author and not those of the editor and editorial board. --- LARancourt@... wrote: > From: LARancourt@... > > Hi everyone, my name is and I have just been > reading all of the messages > the last few days, and it is very interesting. I am > 32 years old and was > just diagnosed last week with what my doctor calls > Autoimmune Cholangitis. I > haven't seen that discussed by anyone yet, it > appears most have Autoimmune > Hepatitis. It was explained to me that my disease > is actually a combination > of AIH, PSC, and PBC. > My reaction to medications may narrow that down, > time will tell. I am > actually very healthy, the only reason I even found > out about this problem > was because of a blood test for life insurance that > showed extremely high > liver function tests. I hope I am lucky that it may > have been caught early, > although I do have liver damage surrounding my bile > ducts according to the > ultrasound and liver biopsy. My ERCP showed that my > bile ducts are ok. > I am taking 30mg of prednisone and will have my > blood checked every month for > the first three months to see how my counts respond. > I really appreciate the > suggestion that was made to get copies of all the > test results and track > them. Its easy to start that now, and I'm sure it > will lead to a better > understanding in the future, so thanks for the idea. > If I don't respond to the prednisone as my doctor > would like, he will add in > another drug called actigal (sp?). > I don't know how long it takes for the side effects > of pred. to appear, but > so far so good after 6 days. I actually find that I > have not much of an > appetite, but I think thats because I am determined > to do everything I can to > not gain weight! The nutritional advice is great, > keep it coming. > After reading many of the stories of sickness, I > feel fortunate that I am > still feeling healthy, so I am trying my hardest to > get in the best and > healthiest shape of my life. I am eating healthy > meals and exercising, > hoping that it will help in the long run. > I am just realizing how much there is unknown about > liver disease, its quite > alarming. I have no idea what my prognosis is at > this point, I guess it just > depends on how quickly the disease progresses > through my liver. > I would be curious to know long many of you have > been ill. Its really > difficult to try and plan to have children when you > really don't know how > long you will be healthy for. I guess you just > can't plan your life around > the disease, and that I am starting to learn. > > I would really appreciate any input, thoughts, and > advice. And if anyone is > familiar with my diagnosis, I would be real > interested to know that too. > > Thanks for this opportunity! > LARancourt@... () > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 1999 Report Share Posted September 2, 1999 ---------- >, Welcome. I think we all understand about how family and friends treat you. You look fine, so you ARE fine. Underneath lies the real truth. It is great therapy to be able to just get on the computer and tell other people just how " bad " or " Good " you feel on a particular day and they fully understand. One day at a time, that is the key. It is the only way to go on. This disease has bought us all together and that IS a positive from a negative situation. Glad you found us. SueB. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 1999 Report Share Posted September 2, 1999 Welcome , sorry you have this awful stuff too, but this is a good place to come to. Lynn in Washington AIH nancy@... wrote: > From: nancy@... > > Hello! I signed on yesterday, and I am very glad to find a support group. I have autoimmune hepatitis and have been taking Prednisone and azathioprine for a year now. My latest test results were good and I have started to reduce the Prednisone, going down from 10 mg/day, hoping to achieve 5 mg/day. I did this once before, this spring, and my fatigue symptoms returned. This time it will be a slower reduction. Anyway, I live by myself. My family and friends are helpful and supportive and not really able to understand about my health situation. I had just retired, from my school bus driving job, last year when I learned about my AIH. I get to stay home and live quietly and stress free in my cabin in the country, in Oregon. What an adventure! Each day is a gift. > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 1999 Report Share Posted September 2, 1999 Sue B. and Lynn, Thank you for your kind welcome. Sue, you are right about how healthy I look. My round moonface cheeks are rosy and my eyes are bright. Now I understand why some people think I am being a slacker because I 'm not bustling around finding a part time job. Right now I am feeling lucky because I have no responsibilities except for myself, and no schedule to follow. It was a lovely early autumn day here, warm enough to go barefoot. Regards to all, _^..^_ milko wrote: > From: " milko " <milko@...> > > ---------- > >, > Welcome. I think we all understand about how family and friends treat you. > You look fine, so you ARE fine. Underneath lies the real truth. It is great > therapy to be able to just get on the computer and tell other people just > how " bad " or " Good " you feel on a particular day and they fully understand. > One day at a time, that is the key. It is the only way to go on. This > disease has bought us all together and that IS a positive from a negative > situation. Glad you found us. > SueB. > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 1999 Report Share Posted September 3, 1999 Welcome !! Can I come live with you??? LOL Glad to have you here!! (AIH) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 1999 Report Share Posted September 3, 1999 ---------- >, Lovely day here too. Remember it is important that you keep your stress levels down. So if anyone or anything upsets you jump onto that computer and share. A problem shared is a problem halved. It is Spring here. Lovely day today too. Have a great weekend. SueB. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 1999 Report Share Posted September 3, 1999 Hi Sue B., Thanks for the good advice. I have always internalized stress, appear placid and serene while churning inside. I have wondered if that hasn't done a lot to contribute to my being AIH. The stress level in my life now is very low. My biggest problem today was whether to wash the dishes or wait until tomorrow to do them. If I do get some real stressful situation I will fling it here and watch while everyone shreds it up for me. I was thinking of you being in 'the land down under' and how spring must be starting there. You are seeing the natural world waking up and budding, and I am starting fires in the wood stove to warm the house on cooler nights and watching leaves start to fall. The days are still sunny and beautiful but that will change because I live in a rainforest. Take care, _^..^_ milko wrote: > From: " milko " <milko@...> > > ---------- > >, > Lovely day here too. > Remember it is important that you keep your stress levels down. So if > anyone or anything upsets you jump onto that computer and share. A problem > shared is a problem halved. > It is Spring here. Lovely day today too. > Have a great weekend. > SueB. > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 1999 Report Share Posted September 3, 1999 Hi , Yes, it does seem like you need a change of scene after your encounters with all that medical rudeness! That psychiatrist needs counseling himself. Bring your umbrella. Last winter I started calling myself Mossytoes. Thanks for your welcoming message. Take good care, _^..^_ La7de@... wrote: > From: La7de@... > > Welcome !! > > Can I come live with you??? LOL Glad to have you here!! > > (AIH) > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 1999 Report Share Posted September 4, 1999 , where are you from? What rain forest? Lynn aih Wheeler wrote: > From: Wheeler <nancy@...> > > Hi Sue B., > > Thanks for the good advice. I have always internalized stress, appear placid > and serene while churning inside. I have wondered if that hasn't done a lot > to contribute to my being AIH. The stress level in my life now is very low. > My biggest problem today was whether to wash the dishes or wait until tomorrow > to do them. If I do get some real stressful situation I will fling it here > and watch while everyone shreds it up for me. > > I was thinking of you being in 'the land down under' and how spring must be > starting there. You are seeing the natural world waking up and budding, and I > am starting fires in the wood stove to warm the house on cooler nights and > watching leaves start to fall. The days are still sunny and beautiful but > that will change because I live in a rainforest. > > Take care, _^..^_ > > milko wrote: > > > From: " milko " <milko@...> > > > > ---------- > > >, > > Lovely day here too. > > Remember it is important that you keep your stress levels down. So if > > anyone or anything upsets you jump onto that computer and share. A problem > > shared is a problem halved. > > It is Spring here. Lovely day today too. > > Have a great weekend. > > SueB. > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 1999 Report Share Posted September 4, 1999 , Welcome!!! We are glad to have you here. You sound like you used to be like me, internalizing stress. How on earth did you stop? I'd also vote to do the dishes tomorrow! Take care. (AIH) Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 1999 Report Share Posted September 4, 1999 , I don't think I have stopped internalizing stress, I think what I have been trying to do is to avoid stress by getting my life simplified. I guess some of that involves learning to say 'no' when someone asks me to participate in something that probably will be stressful. I'm also trying to pace myself and not get overtired. Still didn't do the dishes! : ) Regards, _^..^_ La7de@... wrote: > From: La7de@... > > , > Welcome!!! We are glad to have you here. You sound like you used to be like > me, internalizing stress. How on earth did you stop? I'd also vote to do > the dishes tomorrow! Take care. > > (AIH) > Florida > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 1999 Report Share Posted September 4, 1999 Lynn I live in Oregon, near the coast. We get lots of rain. It is the dry season right now, there is sunshine and stars even. You live in Washington? I've been to Vancouver and to Mt. St. Helens. _^..^_ Lynn wrote: > From: Lynn <CEN32195@...> > > , where are you from? What rain forest? Lynn aih > > Wheeler wrote: > > > From: Wheeler <nancy@...> > > > > Hi Sue B., > > > > Thanks for the good advice. I have always internalized stress, appear placid > > and serene while churning inside. I have wondered if that hasn't done a lot > > to contribute to my being AIH. The stress level in my life now is very low. > > My biggest problem today was whether to wash the dishes or wait until tomorrow > > to do them. If I do get some real stressful situation I will fling it here > > and watch while everyone shreds it up for me. > > > > I was thinking of you being in 'the land down under' and how spring must be > > starting there. You are seeing the natural world waking up and budding, and I > > am starting fires in the wood stove to warm the house on cooler nights and > > watching leaves start to fall. The days are still sunny and beautiful but > > that will change because I live in a rainforest. > > > > Take care, _^..^_ > > > > milko wrote: > > > > > From: " milko " <milko@...> > > > > > > ---------- > > > >, > > > Lovely day here too. > > > Remember it is important that you keep your stress levels down. So if > > > anyone or anything upsets you jump onto that computer and share. A problem > > > shared is a problem halved. > > > It is Spring here. Lovely day today too. > > > Have a great weekend. > > > SueB. > > > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 1999 Report Share Posted September 5, 1999 , we are about 2 hours from Portland. Lynn Wheeler wrote: > From: Wheeler <nancy@...> > > Lynn > > I live in Oregon, near the coast. We get lots of rain. It is the dry season right > now, there is sunshine and stars even. You live in Washington? I've been to > Vancouver and to Mt. St. Helens. > > _^..^_ > > Lynn wrote: > > > From: Lynn <CEN32195@...> > > > > , where are you from? What rain forest? Lynn aih > > > > Wheeler wrote: > > > > > From: Wheeler <nancy@...> > > > > > > Hi Sue B., > > > > > > Thanks for the good advice. I have always internalized stress, appear placid > > > and serene while churning inside. I have wondered if that hasn't done a lot > > > to contribute to my being AIH. The stress level in my life now is very low. > > > My biggest problem today was whether to wash the dishes or wait until tomorrow > > > to do them. If I do get some real stressful situation I will fling it here > > > and watch while everyone shreds it up for me. > > > > > > I was thinking of you being in 'the land down under' and how spring must be > > > starting there. You are seeing the natural world waking up and budding, and I > > > am starting fires in the wood stove to warm the house on cooler nights and > > > watching leaves start to fall. The days are still sunny and beautiful but > > > that will change because I live in a rainforest. > > > > > > Take care, _^..^_ > > > > > > milko wrote: > > > > > > > From: " milko " <milko@...> > > > > > > > > ---------- > > > > >, > > > > Lovely day here too. > > > > Remember it is important that you keep your stress levels down. So if > > > > anyone or anything upsets you jump onto that computer and share. A problem > > > > shared is a problem halved. > > > > It is Spring here. Lovely day today too. > > > > Have a great weekend. > > > > SueB. > > > > > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 1999 Report Share Posted September 5, 1999 ---------- >, Your fire sounds great. I personally (since I have put on so much weight from the pred) cope better with the colder months. I find it hard to cope with the heat. Today was beautiful, weather wise. It is Fathers Day here today. Saw all our kids. It was nice. This day could last right through Summer and I would be happy, it is very tolerable. You have a great week. SueB. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 1999 Report Share Posted September 6, 1999 I love hot weather, but I do not do well in the heat or the sun any more. Is this liver related? Lynn I know my diuretic, I am not supposed to be in the sun, because it retards its ability to work properly. milko wrote: > From: " milko " <milko@...> > > ---------- > >, > Your fire sounds great. I personally (since I have put on so much weight > from the pred) cope better with the colder months. I find it hard to cope > with the heat. Today was beautiful, weather wise. > It is Fathers Day here today. Saw all our kids. It was nice. > This day could last right through Summer and I would be happy, it is very > tolerable. > You have a great week. > SueB. > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 1999 Report Share Posted September 6, 1999 Lynn, I have read that taking prednisone definitely causes intolerance to sun, and somewhere in my reading (I've read soooo much lately, I can't remember where), I read that autoimmune diseases do also. My girlfriend was here from Boston in January, and she wanted to get a head start on here tan, so we went to a tanning booth. We used to do that alot 4 years ago when she lived here. I had 10 min in the booth, and I got such a burn that I was in alot of pain. Not regular sunburn pain (I've lived in Fla. for 30 years, and am olive complected), but this pain was so " deep " that I had to go see an MD. He gave me prednisone. This was pre-diagnosis, so at the time I attributed it to being on hormones, since that was the only different medication I was taking. I'm not sure what caused it for sure, but I will certainly never go in a tanning booth again, and I also don't intend to lay out in the sun. Don't know if it's related, but thought I'd mention it just in case... (AIH) Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 1999 Report Share Posted September 6, 1999 I think you are right. I just can't be in the sun anymore, thanks for the info too. Lynn aih La7de@... wrote: > From: La7de@... > > Lynn, > > I have read that taking prednisone definitely causes intolerance to sun, and > somewhere in my reading (I've read soooo much lately, I can't remember > where), I read that autoimmune diseases do also. > > My girlfriend was here from Boston in January, and she wanted to get a head > start on here tan, so we went to a tanning booth. We used to do that alot 4 > years ago when she lived here. I had 10 min in the booth, and I got such a > burn that I was in alot of pain. Not regular sunburn pain (I've lived in > Fla. for 30 years, and am olive complected), but this pain was so " deep " that > I had to go see an MD. He gave me prednisone. This was pre-diagnosis, so at > the time I attributed it to being on hormones, since that was the only > different medication I was taking. I'm not sure what caused it for sure, but > I will certainly never go in a tanning booth again, and I also don't intend > to lay out in the sun. Don't know if it's related, but thought I'd mention > it just in case... > > (AIH) > Florida > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 1999 Report Share Posted September 8, 1999 , My doctors have speculated that I've had autoimmune reactions for about 20 years. I began having abnormal things happen in the late 1970's and one of the first was sun sensitivity. I have fair complexion but I've never had a problem with easy sunburns. Virtually overnight, I developed sun sensitivity and I thought it was caused by a change in hormones. My doctor said absolutely not. Even exposure to the sun on my arm through a car window would cause a rash and my skin became so sensitive that a hot shower would trigger a rash, or a brush on my cheeks when applying blush, or even my hubby's whiskers on my face. Before that I'd never been allergic to anything or had even a minor skin problem. I believe that aside from sun sensitivity, anti-organ rejection drugs like Imuran make us susceptible to skin cancers. I was told from the start to avoid sun exposure, though I'd already been avoiding it for years. In addition to rashes, I become very ill when I'm too warm and I can't tolerate being in a room without air conditioning during summer months. This seems to be a problem that many of us share. Coincidentally or not, I was hospitalized a couple of weeks after we'd spent a couple of days with my in-laws, who live in Palm Springs. They're elderly and they turn the AC off at night without regard to how hot it is. I woke up in the middle of the first night deathly sick and with abdominal pain. After cooling off (my husband located to thermostat and turned the AC back on) I began to feel okay again. It could be that my metabolism was already messed up and couldn't handle the extra stress, but it's probably not a bad idea to avoid sun and too much heat now that we know that we have an autoimmune disease. Take care, Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 1999 Report Share Posted September 9, 1999 Lynn, I am 28 years old. (and just about ready to start off the rest of my life!!!) Remember " Even the impossible is easy cause we got each other. One day we're gonna get so high!!! " Peace Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 1999 Report Share Posted September 9, 1999 Welcome , hope to hear more from you. How old are you? Lynn aih Rentluv2@... wrote: > From: Rentluv2@... > > Hello all, > > I am a new to the list. My name is and I was diagnosed in 1990 with > AIH and have lived a relatively normal life since then - up until last year. > In Jan 1998 I was admitted to the hospital because of ascities and fluid was > drained from me. Then another year went by and in Feb 1999 developed an > internal infection due to a ruptured varicies in my esophagus that caused me > to develop encephalopathy and lapse into a coma for 5 days and it was very > touchy for several days. (I had passed out at home, by myself, after feeling > ill and leaving work sick. I just thought it's February in Cleveland and I > probably have the flu.) Let me tell you, coming out of that was one of the > weirdest experiences ever! Since then I have been evaluated at the Cleveland > Clinic Transplant Center and since been placed on the transplant list at a > very low priority. My doctors, a team of wonderful gastroenterologists at > Metro Health Medical Center, hope to keep me at that low priority for a long > time since I have responded so well to treatment in the past. I am currently > on a regimen of prednisone, imuran, inderal (for the varicies), lasix, and > aldactone. Keeping the meds straight is a job but I know this is only the > beginning of a long course. > > Well that's my story in 100 words or less. LOL. If anyone has any advice or > news that they feel can help or steer me in the right direction please feel > free to email me directly also at Rentluv2@.... > > Thanks and good luck to everyone!!! > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
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