Guest guest Posted September 8, 2001 Report Share Posted September 8, 2001 Debby, I have been on prednisone and imuran for four years. pred.from 60mg to 10mg daily now and imuran 125mg daily. you get used to it, or I did, but fortunatley it doesn't affect my energy level at all. I am very busy (Im a student) so I kind of have to force myself to do things but it makes me feel better. if that makes sense? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2001 Report Share Posted September 8, 2001 In a message dated 9/8/01 4:10:14 PM Pacific Daylight Time, tdcc2000@... writes: Well, I got another doctor and she put me on Imuran and upped my prednisone by 10 mg per day! She wants me to stay on 10 for one year! That is insane I think, and then, she wants me to stay on the Imuran for 2-3 years. Has anyone else been required to stay on this stuff for this long Many doctors believe that a typical patient may need to be on these medications for life. Frequent lab tests are very important as you reduce dosages to make sure flare-ups don't occur. Everyone's dosage amounts and schedule are different. As an example, I was diagnosed 15 months ago: I began at 80 mg Prednisone and 100 mg Imuran. I'm now down to 5 mg Prednisone and 100 mg Imuran. I might be able to get down to 2.5 mg in a few more months. Wash your hands a lot, of course. Be sure to get the fall flu shot and also vaccinations for Hepatitis A and B. I believe some people who live in dorms have gotten meningitis vaccine, but I might be mistaken. Oddly, I've had only one cold or flu-like illness during this period, perhaps because I'm not out in the work world now. If you don't have Dr. Palmer's book on liver disease, I suggest you look for it. You can order it for about $11 from her web site, or for a bit more from Amazon. Good luck, and keep in touch. Harper (AIH 5/00) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2001 Report Share Posted September 8, 2001 Gosh, thanks for writing back so soon! I am only on 50 mg of Imuran a day. And right now, I am only on 15 mg of Prednisone per day tapering from 30 per day. I just hope that the doctor doesn't up the dosage at all! I make myself get busy during the day...the one thing that the prednisone IS good for is that burst of energy during the day, but later in the day, I crash...repeat the same process daily....yuck! Unfortunately, I think I am much older than you! Keep up the good work! I go to the gym 3-4 days per week and work out on the elipitcle machine for 55 minutes and then I do weights too. Trouble is that this week I just have NOT had enough energy to do any work at the gym. Just plum worn out and fighting off a sore throat! THanks for the info! debby Re: [ ] HI, I am new... Debby, I have been on prednisone and imuran for four years. pred.from 60mg to 10mg daily now and imuran 125mg daily. you get used to it, or I did, but fortunatley it doesn't affect my energy level at all. I am very busy (Im a student) so I kind of have to force myself to do things but it makes me feel better. if that makes sense? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2001 Report Share Posted September 8, 2001 It's very important to take Prednisone at the same time every day. It's best metabolized when taken before 9 a.m. My doctor said she wasn't sure I could avoid weight gain with Prednisone, and that she would recommend that I not use my energy fighting it. She stressed that good nutrition is essential during liver disease. However, obesity certainly has physical risks as well as being hard on one's self-esteem. Some people in this group have managed to avoid substantial weight gain. A book, "Coping with Prednisone", describes someone who was determined not to gain weight and succeeded fairly well. However, she didn't have liver disease and she didn't take a great deal of Prednisone. Remember that the drug treatment is necessary to save your life. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2001 Report Share Posted September 8, 2001 Thank you for writing back. Wow...I have heard of people being on that high a dose of pred but don't know how they survive it! Gosh, just at 30, I thought I was going crazy! Then, no one told me that I was supposed to take the medicine in the AM NOT at night! For the first two weeks, I took it at night and didn't sleep for two long weeks. I ended up with a prednisone psychosis! That scared me a lot! My internet search showe me that I needed to take it during the day. Since switching, I have done fine with the mood swings! The only other problem is the weight gain. The doctor I see now, just told me to not eat as much! I had worked so hard since January of this year to lose 37 pounds of weight. I feel much better. BUT, since taking the pred, I have gained 11 back and am just devastated! I cannot believe that I worked SO hard only to put some back on. Plus, I go to the gym and work out 3-4 days a week. I work out for at least an hour and get my heart rate to the middle of my training zone....129 beats per minute on the elipticle machine. It is a wonderful maching and I use the machine for 55 minutes each time I go. I use up at least 750 calories and generally 800. So, I am doing what I am supposed to do. I also keep the fats low and the veges and fruit high! But no weight loss since the initial gain of those 11 pounds. Any suggestions? I really don't know what to do! debby Re: [ ] HI, I am new... In a message dated 9/8/01 4:10:14 PM Pacific Daylight Time, tdcc2000@... writes: Well, I got another doctor and she put me on Imuran and upped my prednisone by 10 mg per day! She wants me to stay on 10 for one year! That is insane I think, and then, she wants me to stay on the Imuran for 2-3 years. Has anyone else been required to stay on this stuff for this long Many doctors believe that a typical patient may need to be on these medications for life. Frequent lab tests are very important as you reduce dosages to make sure flare-ups don't occur. Everyone's dosage amounts and schedule are different. As an example, I was diagnosed 15 months ago: I began at 80 mg Prednisone and 100 mg Imuran. I'm now down to 5 mg Prednisone and 100 mg Imuran. I might be able to get down to 2.5 mg in a few more months. Wash your hands a lot, of course. Be sure to get the fall flu shot and also vaccinations for Hepatitis A and B. I believe some people who live in dorms have gotten meningitis vaccine, but I might be mistaken. Oddly, I've had only one cold or flu-like illness during this period, perhaps because I'm not out in the work world now. If you don't have Dr. Palmer's book on liver disease, I suggest you look for it. You can order it for about $11 from her web site, or for a bit more from Amazon. Good luck, and keep in touch. Harper (AIH 5/00) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2001 Report Share Posted September 8, 2001 In a message dated 9/8/01 7:20:28 PM Pacific Daylight Time, tdcc2000@... writes: The doctor told me that there is generally no weight gain on pred, but everyone who has ever been on it for a long time gains. Where in the world did he get that idea? Maybe you need a better informed doctor. Obesity is one of the most common and serious side effects of Prednisone use. If he or she is overlooking that obvious side effect, I hope the other possible side effects aren't being ignored. Be sure you're looking out for possible bone loss, high blood pressure, diabetes, depression or other personality changes, cataracts, and glaucoma. And, stay out of the sun. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2001 Report Share Posted September 8, 2001 Hi Debby: I had my biopsy in 1998 and have been on several rounds of Pred and Imuran and 6MP for 3 years. I had to quite Imuran as he made me throw up constantly and very violently. I am not on just 6MP and have just recently come down from 30 mg. and am down to 5 mg. every other day. At one time when I was initially diagnosed I took 60 mg. Could not sleep a wink. I hate the weight gain like everyone else has expressed. My sed rate continues to be elevated unless I take large doses of Pred. I am very frustrated. I am having another biopsy next month to see how things have progressed. I have AIH. I'm sorry to say but a lot of doctors do not know a lot about autoimmune diseases in general. Unfortunately when you have one autoimmune disease you usually have more. I have symptoms of trigeminal neuralgia but no doctor can confirm. My neurologist is puzzled by it somewhat but willing to work with me. I have one sided (left) headaches and pain in the temple and jaw. Drives me crazy. Anyone else out there with these symptoms? Jan in Florida -----Original Message-----From: Tex Pueschel [mailto:tdcc2000@...]Sent: Saturday, September 08, 2001 7:05 PM Subject: [ ] HI, I am new... Hi, my name is debby and I have AIH. It was just dx 6 weeks ago, and I am on Imuran and Prednisone. I have been reading some of the posts and it has been good to know that there are those who are having similar problems as have I. The doctor first put me on 6MP and prednisone and then he fired me...didn't want to admit I knew more of the disease than he did. I also have several other autoimmune problems. Once, a doctor told me that I could be the poster child for autoimmune diseases. It is frustrating. Well, I got another doctor and she put me on Imuran and upped my prednisone by 10 mg per day! She wants me to stay on 10 for one year! That is insane I think, and then, she wants me to stay on the Imuran for 2-3 years. Has anyone else been required to stay on this stuff for this long? Another thing...I see my new GI this week and how can you get a doctor to tell you what stage and level you are on? I just hate this stuff and the meds are horrible. Do any of you have problems with energy and illnesses? I teach little kids and strep is rampant at school! How DO you stay healthy? Thanks for your input... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2001 Report Share Posted September 8, 2001 Jan, so you just now started 6MP? How come they did not start you on that to begin with? I am just full of questions, for I have NEVER found anyone who has taken these meds and can tell me what the sides are like. The doctor told me that there is generally no weight gain on pred, but everyone who has ever been on it for a long time gains. I don't understand...however, I actually understnad that doctors are really ignorant when it comes to autoimmune diseases. I actually had several doctors double over in hysterical laughter when I told them I had Celiac, for I am one of the 5% who are fat to begin with and have celiac. These two doctors could NOT believe that I have the disease. Now, this new one wants to have my slides to PROVE that I indeed DO have celiac and autoimmune hep. I don't understand. THis is total humiliation when I am told that I could not possible have these diseases because I am fat. That is why I am confused and scared. Why is is that fat people cannot have diseases? The original GI doctor told me that I just had fatty liver, because that is what the ultra sound 'showed" but when the biopsy came back, it showed NO fatty inflitration. In fact, the surgeon was totally surprised that I had AIH. He just sat on his chair and looked at me and said, I have never seen a case like yours. Why are we so rare? Is there any doctor out there who knows how to treat this? Please, please give me some encouragment. The original doctor also told me that I could continue on with my life as normal...nothing would need to change, but when I needed to get the GI's permission to have a dental implant done last month, he would not give it because it would affect the liver when I had the general anesthia. So, how is THAT normal? THen, the literature says to not be around people who are sick, or little ones who have chicken pox, etc. I teach little kids and they are ALWAYS sick with either strep or chicken pox. How is that normal? ANy input would be gratefully appreciated! debby RE: [ ] HI, I am new... Hi Debby: I had my biopsy in 1998 and have been on several rounds of Pred and Imuran and 6MP for 3 years. I had to quite Imuran as he made me throw up constantly and very violently. I am not on just 6MP and have just recently come down from 30 mg. and am down to 5 mg. every other day. At one time when I was initially diagnosed I took 60 mg. Could not sleep a wink. I hate the weight gain like everyone else has expressed. My sed rate continues to be elevated unless I take large doses of Pred. I am very frustrated. I am having another biopsy next month to see how things have progressed. I have AIH. I'm sorry to say but a lot of doctors do not know a lot about autoimmune diseases in general. Unfortunately when you have one autoimmune disease you usually have more. I have symptoms of trigeminal neuralgia but no doctor can confirm. My neurologist is puzzled by it somewhat but willing to work with me. I have one sided (left) headaches and pain in the temple and jaw. Drives me crazy. Anyone else out there with these symptoms? Jan in Florida -----Original Message-----From: Tex Pueschel [mailto:tdcc2000@...]Sent: Saturday, September 08, 2001 7:05 PM Subject: [ ] HI, I am new... Hi, my name is debby and I have AIH. It was just dx 6 weeks ago, and I am on Imuran and Prednisone. I have been reading some of the posts and it has been good to know that there are those who are having similar problems as have I. The doctor first put me on 6MP and prednisone and then he fired me...didn't want to admit I knew more of the disease than he did. I also have several other autoimmune problems. Once, a doctor told me that I could be the poster child for autoimmune diseases. It is frustrating. Well, I got another doctor and she put me on Imuran and upped my prednisone by 10 mg per day! She wants me to stay on 10 for one year! That is insane I think, and then, she wants me to stay on the Imuran for 2-3 years. Has anyone else been required to stay on this stuff for this long? Another thing...I see my new GI this week and how can you get a doctor to tell you what stage and level you are on? I just hate this stuff and the meds are horrible. Do any of you have problems with energy and illnesses? I teach little kids and strep is rampant at school! How DO you stay healthy? Thanks for your input... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 No I did not just start 6 MP. My initial meds was 60 mg. pred but later he added Purinethol and that was a med I had the bad reaction to- severe nausea. Then he changed me to pred and 6 MP. I've been on and off pred but always on 6 MP even when I did not take pred. I hate it all but guess have no choice. I have my 2nd biopsy next month and will see what the progression is. My friends think I'm weird for wanting to know but I don't feel that way. It's been 3 years since I was diagnosed with AIH and I want to see how fast the progression is going. My doctor did not recommend the biopsy I asked him to redo it. He agreed. He knows I read up on my disease and am well informed. At first he did not know what to think of my knowing about my illness but once I was diagnosed I dug in and researched. What is it Debby that you have if anything besides AIH? Jan -----Original Message-----From: Tex Pueschel [mailto:tdcc2000@...]Sent: Saturday, September 08, 2001 10:16 PM Subject: Re: [ ] HI, I am new... Jan, so you just now started 6MP? How come they did not start you on that to begin with? I am just full of questions, for I have NEVER found anyone who has taken these meds and can tell me what the sides are like. The doctor told me that there is generally no weight gain on pred, but everyone who has ever been on it for a long time gains. I don't understand...however, I actually understnad that doctors are really ignorant when it comes to autoimmune diseases. I actually had several doctors double over in hysterical laughter when I told them I had Celiac, for I am one of the 5% who are fat to begin with and have celiac. These two doctors could NOT believe that I have the disease. Now, this new one wants to have my slides to PROVE that I indeed DO have celiac and autoimmune hep. I don't understand. THis is total humiliation when I am told that I could not possible have these diseases because I am fat. That is why I am confused and scared. Why is is that fat people cannot have diseases? The original GI doctor told me that I just had fatty liver, because that is what the ultra sound 'showed" but when the biopsy came back, it showed NO fatty inflitration. In fact, the surgeon was totally surprised that I had AIH. He just sat on his chair and looked at me and said, I have never seen a case like yours. Why are we so rare? Is there any doctor out there who knows how to treat this? Please, please give me some encouragment. The original doctor also told me that I could continue on with my life as normal...nothing would need to change, but when I needed to get the GI's permission to have a dental implant done last month, he would not give it because it would affect the liver when I had the general anesthia. So, how is THAT normal? THen, the literature says to not be around people who are sick, or little ones who have chicken pox, etc. I teach little kids and they are ALWAYS sick with either strep or chicken pox. How is that normal? ANy input would be gratefully appreciated! debby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 Hi Debby. I've been on the prednisone and Imuran for like 8 years. In my case I probably have to stay on the medicin for the rest of my life. But I think it is different from case to case. In the first couple of years I had to go through all the side effects. But as years went by I'm doing very very well on the medicin. Now I take 7.5 mg of prednisone and 100 mg of imuran daily. The first couple of years were crappy, but then the energy level came back up, the weight started to drop. Joint pains etc went away. Now I live a perfectly normal life and I'm even pregnant with 6 weeks to go. And have had an easy pregnancy so far. I rarely get sick (flu, colds etc), and that's without getting the flushots. I've maybe had one flu in the last 2 1/2 years. Unfortunately many doctors don't know much about this disease. I've been lucky with this doctor I have now. He is young and really really wants to learn. And if you have a question for him even if he doesn't know he'll do whatever it takes to find the answer. Just wanted to let you know that it IS possible to live with the drugs even though it might take a while to get used to them Keep your mood up! Heidi Gardarsson > Jan, so you just now started 6MP? How come they did not start you on that to begin with? I am just full of questions, for I have NEVER found anyone who has taken these meds and can tell me what the sides are like. > > The doctor told me that there is generally no weight gain on pred, but everyone who has ever been on it for a long time gains. I don't understand...however, I actually understnad that doctors are really ignorant when it comes to autoimmune diseases. > > I actually had several doctors double over in hysterical laughter when I told them I had Celiac, for I am one of the 5% who are fat to begin with and have celiac. These two doctors could NOT believe that I have the disease. Now, this new one wants to have my slides to PROVE that I indeed DO have celiac and autoimmune hep. I don't understand. THis is total humiliation when I am told that I could not possible have these diseases because I am fat. That is why I am confused and scared. Why is is that fat people cannot have diseases? > > The original GI doctor told me that I just had fatty liver, because that is what the ultra sound 'showed " but when the biopsy came back, it showed NO fatty inflitration. In fact, the surgeon was totally surprised that I had AIH. He just sat on his chair and looked at me and said, I have never seen a case like yours. > > Why are we so rare? Is there any doctor out there who knows how to treat this? Please, please give me some encouragment. The original doctor also told me that I could continue on with my life as normal...nothing would need to change, but when I needed to get the GI's permission to have a dental implant done last month, he would not give it because it would affect the liver when I had the general anesthia. So, how is THAT normal? THen, the literature says to not be around people who are sick, or little ones who have chicken pox, etc. I teach little kids and they are ALWAYS sick with either strep or chicken pox. How is that normal? > > ANy input would be gratefully appreciated! > debby > [ ] HI, I am new... > > > Hi, my name is debby and I have AIH. It was just dx 6 weeks ago, and I am on Imuran and Prednisone. I have been reading some of the posts and it has been good to know that there are those who are having similar problems as have I. > > The doctor first put me on 6MP and prednisone and then he fired me...didn't want to admit I knew more of the disease than he did. I also have several other autoimmune problems. Once, a doctor told me that I could be the poster child for autoimmune diseases. It is frustrating. > > Well, I got another doctor and she put me on Imuran and upped my prednisone by 10 mg per day! She wants me to stay on 10 for one year! That is insane I think, and then, she wants me to stay on the Imuran for 2-3 years. > > Has anyone else been required to stay on this stuff for this long? Another thing...I see my new GI this week and how can you get a doctor to tell you what stage and level you are on? I just hate this stuff and the meds are horrible. > > Do any of you have problems with energy and illnesses? I teach little kids and strep is rampant at school! How DO you stay healthy? Thanks for your input... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 Debby, Sounds like you have had some less than wonderful doctor experiences... some of us can relate to that. In my case, the first GI I saw kept asking me about my alcohol use as he examined the spider veins on my face..then verified what I told him with my husband..like I was trying to hide something...geeze.. The second GI was much more into getting family history as well as my medical. He was the first one who even indicated he was testing my antibodies. He has also encouraged me to learn about this as much as I can on my own... feels it makes it a lot easier for both of us! I hope you can find one like my doctor #2. As far as weight (and before pred that was already a problem for me) hepatitis affects your weight..but some people gain, some lose. If weight is gained, it seems to settle in the abdominal area. Add prednisone to that, no matter what effect hep had on weight, most experience some weight gain which again seems to settle in the abdominal area. Kind of adding insult to injury. You asked about side effects. I have been on prednisone for over 10 months...dosage started @ 60 and am now down to 5. 6MP was added when the pred started losing its effectiveness. Prednisone has been the cause of most of the side effects...some uncomfortable, some unpleasant, some unattractive...but the alternative really stinks. I did not experience the severe mood swings (some warned my husband I might turn into a shedevil). At the highest dosage, I was kind of nutty...felt like I was doing stand up comedy on speed. Did have some down days, big time pity parties, but dont know if that was the pred or just dealing with having AIH. Sleeping is difficult on pred; as the dosage has decreased it is a little better, but not by much. Prednisone has caused me to add 20 + lbs I did NOT need; facial hair; the hair on my head grew like crazy and is the longest it has been since I was in High School. Has some skin breakouts which finally cleared up. Pred has thinned out my skin, and it tears very easily. I bruise much easier now, and the bruises last forever. It now seems to have some ill effects on my stomach. I have suffered from GERD since I was young, and now none of the medications I have used in the past for that works. The thing about pred that bothers me the most is the effect it has had on my brain..I really do miss it! As for the 6mp occasional nausea is the most common thing for me. Initially, it did cause a lot of joint and muscle problems, but that has seemed to ease off for the most part. Otherwise have no complaint with that. Just hope my health insurance continues to cover that one. My doctor told me to take reasonable precautions as far as avoiding illness. I have had to make some adjustments @ work ( I work in the criminal justice system) such as not going to the jail or interacting with inmates (too high a risk of TB). With the exception of AIH, I have not been sick with anything in the past year, other than a UTI. Sorry to have been so wordy, but wanted to answer some of your questions and concerns. Hang in there.... nne > Jan, so you just now started 6MP? How come they did not start you on that to begin with? I am just full of questions, for I have NEVER found anyone who has taken these meds and can tell me what the sides are like. > > The doctor told me that there is generally no weight gain on pred, but everyone who has ever been on it for a long time gains. I don't understand...however, I actually understnad that doctors are really ignorant when it comes to autoimmune diseases. > > I actually had several doctors double over in hysterical laughter when I told them I had Celiac, for I am one of the 5% who are fat to begin with and have celiac. These two doctors could NOT believe that I have the disease. Now, this new one wants to have my slides to PROVE that I indeed DO have celiac and autoimmune hep. I don't understand. THis is total humiliation when I am told that I could not possible have these diseases because I am fat. That is why I am confused and scared. Why is is that fat people cannot have diseases? > > The original GI doctor told me that I just had fatty liver, because that is what the ultra sound 'showed " but when the biopsy came back, it showed NO fatty inflitration. In fact, the surgeon was totally surprised that I had AIH. He just sat on his chair and looked at me and said, I have never seen a case like yours. > > Why are we so rare? Is there any doctor out there who knows how to treat this? Please, please give me some encouragment. The original doctor also told me that I could continue on with my life as normal...nothing would need to change, but when I needed to get the GI's permission to have a dental implant done last month, he would not give it because it would affect the liver when I had the general anesthia. So, how is THAT normal? THen, the literature says to not be around people who are sick, or little ones who have chicken pox, etc. I teach little kids and they are ALWAYS sick with either strep or chicken pox. How is that normal? > > ANy input would be gratefully appreciated! > debby > [ ] HI, I am new... > > > Hi, my name is debby and I have AIH. It was just dx 6 weeks ago, and I am on Imuran and Prednisone. I have been reading some of the posts and it has been good to know that there are those who are having similar problems as have I. > > The doctor first put me on 6MP and prednisone and then he fired me...didn't want to admit I knew more of the disease than he did. I also have several other autoimmune problems. Once, a doctor told me that I could be the poster child for autoimmune diseases. It is frustrating. > > Well, I got another doctor and she put me on Imuran and upped my prednisone by 10 mg per day! She wants me to stay on 10 for one year! That is insane I think, and then, she wants me to stay on the Imuran for 2-3 years. > > Has anyone else been required to stay on this stuff for this long? Another thing...I see my new GI this week and how can you get a doctor to tell you what stage and level you are on? I just hate this stuff and the meds are horrible. > > Do any of you have problems with energy and illnesses? I teach little kids and strep is rampant at school! How DO you stay healthy? Thanks for your input... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 Dear Jan, I thank you for your info. I was under the impression that 6MP and purinethol were the same drug, but I am just learning about it all now! Anyway, the 6MP made more sick than the Imuran. Sometimes the Imuran is more than I can handle too, but for right now, I am doing the best I can on this med. As for other autoimmune diseases, I have Celiac Sprue, Dermatitis Herpitiformus (the skin counterpart of Celiac-what celiac does to the gut, DH does to the skin), Roseacea (sp), Vitiligo and Lichen Sclorosis. Interestingly enough, the research that I have read says that AIH is often preceeded by vitiligo. I thought that was very interesting. So, with vitiligo running in the family, I am wondering if some of the cancer deaths in my mother's side of the family were truly involved with Liver failure OR Celiac Sprue. There are 16 in my family who have died of one kind of cancer or another. My mom currently suffers from Breast Cancer-and a very aggressive one, BUT the chemo herceptin is keeping it in remission at the present. She has what is called Inflammatory Breast Cancer (IBC). This is a very aggressive and deadly cancer. Once it takes hold, and if not controlled or gotten into remission, it takes its victims quickly..within months. Well, so much for the famiy history! I admire you for having another biopsy. One is plenty for me! I had one endoscopy to detect the celiac sprue and will NEVER have another one. As for the liver biopsy, I had one 2 months ago when they did my gall bladder surgery...I was asleep, but do not plan on having another one unless I am totally out. I was totally awake for the endoscopy, and will never subject myself to that process of having something done while awake! Thanks again for the info! debby RE: [ ] HI, I am new... No I did not just start 6 MP. My initial meds was 60 mg. pred but later he added Purinethol and that was a med I had the bad reaction to- severe nausea. Then he changed me to pred and 6 MP. I've been on and off pred but always on 6 MP even when I did not take pred. I hate it all but guess have no choice. I have my 2nd biopsy next month and will see what the progression is. My friends think I'm weird for wanting to know but I don't feel that way. It's been 3 years since I was diagnosed with AIH and I want to see how fast the progression is going. My doctor did not recommend the biopsy I asked him to redo it. He agreed. He knows I read up on my disease and am well informed. At first he did not know what to think of my knowing about my illness but once I was diagnosed I dug in and researched. What is it Debby that you have if anything besides AIH? Jan -----Original Message-----From: Tex Pueschel [mailto:tdcc2000@...]Sent: Saturday, September 08, 2001 10:16 PM Subject: Re: [ ] HI, I am new... Jan, so you just now started 6MP? How come they did not start you on that to begin with? I am just full of questions, for I have NEVER found anyone who has taken these meds and can tell me what the sides are like. The doctor told me that there is generally no weight gain on pred, but everyone who has ever been on it for a long time gains. I don't understand...however, I actually understnad that doctors are really ignorant when it comes to autoimmune diseases. I actually had several doctors double over in hysterical laughter when I told them I had Celiac, for I am one of the 5% who are fat to begin with and have celiac. These two doctors could NOT believe that I have the disease. Now, this new one wants to have my slides to PROVE that I indeed DO have celiac and autoimmune hep. I don't understand. THis is total humiliation when I am told that I could not possible have these diseases because I am fat. That is why I am confused and scared. Why is is that fat people cannot have diseases? The original GI doctor told me that I just had fatty liver, because that is what the ultra sound 'showed" but when the biopsy came back, it showed NO fatty inflitration. In fact, the surgeon was totally surprised that I had AIH. He just sat on his chair and looked at me and said, I have never seen a case like yours. Why are we so rare? Is there any doctor out there who knows how to treat this? Please, please give me some encouragment. The original doctor also told me that I could continue on with my life as normal...nothing would need to change, but when I needed to get the GI's permission to have a dental implant done last month, he would not give it because it would affect the liver when I had the general anesthia. So, how is THAT normal? THen, the literature says to not be around people who are sick, or little ones who have chicken pox, etc. I teach little kids and they are ALWAYS sick with either strep or chicken pox. How is that normal? ANy input would be gratefully appreciated! debby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2001 Report Share Posted October 17, 2001 Hi, my name is Shoshana and I have both Hypoglycemia and Candida. I am also finding myself having arthritic symptoms too, which I know is an immune system problem as well. I am fairly knowledgable on Hypoglycemia and have it mostly under control, but I have had Candida for a year and am struggling a bit. I try to stick to the diet as much as I can, and I find that a Protein rich low carb diet really helps. I guess what I really need is encouragement to keep going until it is gone or at least under control. Mostly the yeast infections and the tiredness all the time is the worst of it for me. Maybe I just need to declare an all out war against this. What I am wondering about is how to get rid of the yeast infection. After having it for most of the year, it is getting old! Is there a cleanse for this? I have tried garlic, Pau D'Arco, cinnamon, grapefruit juice, acidophillus and all the other supplements. It goes away for a while, but then it keeps coming back , the yeast infection that is. I heard apple cider vinegar may be a good one to soak in and tea tree oil. Does anyone else have any suggestions? I need a super supplement! Thanks for your help, and I am looking forward to trading ideas with all of you! Shoshana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2004 Report Share Posted October 31, 2004 Hi Carolyn. Thanks so much for responding to my post. I am so excited to be in this group. I know I have alot to learn and I am learning as fast as I can by reading most everything I can get my hands on. God has given me a great deal of peace about this whole situation, and I know He will be with us through each step. After all He is the Great Physician. God bless you and your son. Kristi > Hi Kristi, > > Welcome! I just wrote a letter to a new lady, , > so won't repeat what I said to her. Maybe you can read it. > Anyway I believe you have come to the right place because I > believe that the main thing you need right now, and will > need in the years to come, is knowing you are not alone in > this. It is helpful to know that many have gone before you, > and that they have made it. Kind of like the pioneers when > they were heading from the east coast to Oregon, they took > encouragement from those who had gone before them. You are > just starting this journey, but do not fear, you will be > fine. You will learn a lot, and you will be fine. Most of > all, I have learned that Love will prevail, Love is more > powerful than any other force there is. > > Love, > Carolyn in Oregon > > Hi, I am new... > > > > My name is Kristi. I am a 24 yr old mother of 2. My oldest > is 4 and > he was diagnosed last week with Aspergers. I also have a 1 > yr old > daughter. I hope to get to know some of you. We are just in > the > beginning stages of all this. I have just ordered some > samples of > SuperNu Thera and DMG from Kirkman Labs. And we are trying > to find a > DAN Dr., as well as thinking about doing the GFCF diet and > trying to > apply for funding for treatments. He is also supposed to > start > school here in my county in a special needs pre-K. His name > is > . > Nice to " meet " you all, > Kristi > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2004 Report Share Posted October 31, 2004 Hi Carolyn. Thanks so much for responding to my post. I am so excited to be in this group. I know I have alot to learn and I am learning as fast as I can by reading most everything I can get my hands on. God has given me a great deal of peace about this whole situation, and I know He will be with us through each step. After all He is the Great Physician. God bless you and your son. Kristi > Hi Kristi, > > Welcome! I just wrote a letter to a new lady, , > so won't repeat what I said to her. Maybe you can read it. > Anyway I believe you have come to the right place because I > believe that the main thing you need right now, and will > need in the years to come, is knowing you are not alone in > this. It is helpful to know that many have gone before you, > and that they have made it. Kind of like the pioneers when > they were heading from the east coast to Oregon, they took > encouragement from those who had gone before them. You are > just starting this journey, but do not fear, you will be > fine. You will learn a lot, and you will be fine. Most of > all, I have learned that Love will prevail, Love is more > powerful than any other force there is. > > Love, > Carolyn in Oregon > > Hi, I am new... > > > > My name is Kristi. I am a 24 yr old mother of 2. My oldest > is 4 and > he was diagnosed last week with Aspergers. I also have a 1 > yr old > daughter. I hope to get to know some of you. We are just in > the > beginning stages of all this. I have just ordered some > samples of > SuperNu Thera and DMG from Kirkman Labs. And we are trying > to find a > DAN Dr., as well as thinking about doing the GFCF diet and > trying to > apply for funding for treatments. He is also supposed to > start > school here in my county in a special needs pre-K. His name > is > . > Nice to " meet " you all, > Kristi > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2004 Report Share Posted October 31, 2004 Hi Debbie. Your son sounds ALOT like mine. I read your 1st post about his behaviors. And he and my son could almost be twins from a behavioral standpoint. My son will be 4 Nov. 9th. He also can interact almost totally normally almost all the time. He is very smart. Knows alphabet, full names of every family member, can carry on a very adult conversation, knows shapes, numbers, colors, etc. He also a a fixation with videos and DVD's. We went to Disney World a few weeks ago, and it is about an 8 hr drive for us. He played the same movie or the same (5 min segment)of the movie the entire drive. He does the same thing at home. He also echos movie sayings or things he hears others saying. He knows all about the theaters and what is playing and is very intent on going to see the movies and when they are over he will cry for hours after we leave the theater. He also has some behavioral problems, lacks any understanding of others feelings, and does not understand how to socialize with other people. He has lots of sensory sensitivities. Shoes and socks bother him, grass on his feet, water, nail clipping, sounds, tags or embroidery. I am so glad I read your post. I was feeling like the only one out there who sees these problems and knows they are not normal. Many people in mime and my husbands families believe we are wrong to think he has anything going on " He is just being a boy " They will say, or " don't you think he will grow out of it " It just makes me so mad to hear some of those things. I want to scream at them and say " NO YOU DUMMY, THIS IS NOT NORMAL!!! " But I also know they do not live with him and they do not see all the things I see. All we can do is what we know is right for our child and not listen to people who are unwilling to help or understand. Hope to talk to you again soon. I will be praying for you and your son. It deffinetly sounds like Aspergers to me. Go to a good psychologist and get an answer. There is help out there. Much more than I realized. God bless, Kristi > Aspergers huh? Camden will be 4 in January. Im wondering if we will have to switch his diet, although I already took away all the sugary stuff, and that is making a huge diffrence, but I noticed when he is home, just watching tv or any show, he gets very hyper and after about 1 hour, he is bonkers, so no more then 1 hour of tv a day for kids right now. > > > ~*~*~*~*~*~*~*~*~*~ > Debbie > ~*~*~*~*~*~*~*~*~*~ > > > > > Hi, I am new... > > > > My name is Kristi. I am a 24 yr old mother of 2. My oldest is 4 and > he was diagnosed last week with Aspergers. I also have a 1 yr old > daughter. I hope to get to know some of you. We are just in the > beginning stages of all this. I have just ordered some samples of > SuperNu Thera and DMG from Kirkman Labs. And we are trying to find a > DAN Dr., as well as thinking about doing the GFCF diet and trying to > apply for funding for treatments. He is also supposed to start > school here in my county in a special needs pre-K. His name is > . > Nice to " meet " you all, > Kristi > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2004 Report Share Posted October 31, 2004 Hi Debbie. Your son sounds ALOT like mine. I read your 1st post about his behaviors. And he and my son could almost be twins from a behavioral standpoint. My son will be 4 Nov. 9th. He also can interact almost totally normally almost all the time. He is very smart. Knows alphabet, full names of every family member, can carry on a very adult conversation, knows shapes, numbers, colors, etc. He also a a fixation with videos and DVD's. We went to Disney World a few weeks ago, and it is about an 8 hr drive for us. He played the same movie or the same (5 min segment)of the movie the entire drive. He does the same thing at home. He also echos movie sayings or things he hears others saying. He knows all about the theaters and what is playing and is very intent on going to see the movies and when they are over he will cry for hours after we leave the theater. He also has some behavioral problems, lacks any understanding of others feelings, and does not understand how to socialize with other people. He has lots of sensory sensitivities. Shoes and socks bother him, grass on his feet, water, nail clipping, sounds, tags or embroidery. I am so glad I read your post. I was feeling like the only one out there who sees these problems and knows they are not normal. Many people in mime and my husbands families believe we are wrong to think he has anything going on " He is just being a boy " They will say, or " don't you think he will grow out of it " It just makes me so mad to hear some of those things. I want to scream at them and say " NO YOU DUMMY, THIS IS NOT NORMAL!!! " But I also know they do not live with him and they do not see all the things I see. All we can do is what we know is right for our child and not listen to people who are unwilling to help or understand. Hope to talk to you again soon. I will be praying for you and your son. It deffinetly sounds like Aspergers to me. Go to a good psychologist and get an answer. There is help out there. Much more than I realized. God bless, Kristi > Aspergers huh? Camden will be 4 in January. Im wondering if we will have to switch his diet, although I already took away all the sugary stuff, and that is making a huge diffrence, but I noticed when he is home, just watching tv or any show, he gets very hyper and after about 1 hour, he is bonkers, so no more then 1 hour of tv a day for kids right now. > > > ~*~*~*~*~*~*~*~*~*~ > Debbie > ~*~*~*~*~*~*~*~*~*~ > > > > > Hi, I am new... > > > > My name is Kristi. I am a 24 yr old mother of 2. My oldest is 4 and > he was diagnosed last week with Aspergers. I also have a 1 yr old > daughter. I hope to get to know some of you. We are just in the > beginning stages of all this. I have just ordered some samples of > SuperNu Thera and DMG from Kirkman Labs. And we are trying to find a > DAN Dr., as well as thinking about doing the GFCF diet and trying to > apply for funding for treatments. He is also supposed to start > school here in my county in a special needs pre-K. His name is > . > Nice to " meet " you all, > Kristi > > > > > Quote Link to comment Share on other sites More sharing options...
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