Guest guest Posted July 20, 2001 Report Share Posted July 20, 2001 I just recently started 100mg of Imuran until September when I go to down to 50mg. I also take 10mg of prednisone. I started taking the Imuran during my dinner meal (to not interfere with my other meds), but recently have switched to a morning dosage (4am) when I take my prednisone. I have noticed only slight nausea and mild diarrhea, nothing to complain about though. 4am may be a little harsh for you, but I start my medication regime at 2am because I had a bad reaction with taking my heart meds (ace inhibitor) and the prednisone together. I finish my regime at 6am with some more meds (calcium channel blockers, potassium, and lasix). This regime seems to give me the best " bang for the buck " for both my heart, liver, and fluid retention. FYI: Prednisone should be taken before the mid-morning. Clyde -- =========================================================+ Help save a life, become an organ and tissue donor today.| =========================================================+ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2001 Report Share Posted July 20, 2001 Terri; I have always taken the prednisone and Azathioprine with my food at breakfast. I have been taking both for over 3 yrs. and started prednisone over 4 yrs ago. Leona AZ [ ] Imuran As part of my AIH treatment, I wWill start to take Imurannext week when my dose of Prednisone will be reduced to10 mg (After being on 40 mg, then 30 mg, currently on20 mg - each for a week).So far, despite all my worries, I have had minimal sideeffects on the Prednisone and actually feel great (comparedto how lousy I felt before). But I know the longer you areon Prednisone, that's when the side effects may kick in.Anyhow, I'm to take 50 mg of Imuran daily along with 10mg of Prednisone for about 4 weeks and then will do bloodlab work to see if my levels have improved.My questions to anyone who has a similar situation is;- When you started taking the Imuran - did you notice ANYchange at all immediately, such as the Prenisone not workingas well? Any side effects kicking in immediately, etc. Also, did any of you feel much better after taking Imuran?- Also, what time of day seems to be best to take this medicine?In the morning? At bedtime? Did taking with food work better?or on a empty stomach? Okay to take along with the Prednisone? Did it disturb your sleep? What worked best for you.I know everyone's experience is different, would just like to hear about it, if you want to share.Thanks - really enjoy reading everyone's posts. It suredoes help to be in touch with people who can understandwhat you are going through.Terri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2001 Report Share Posted July 21, 2001 So you take both at the same time with food at breakfast? How many mg of each? You don't get an upset stomach or any " odd " feeling from taking both at the same time? Also, as you have been taking prednisone for so long, are you having a lot of problems with the side effects? I'm hoping I won't have to take the prednisone for too long, but so far have not had a lot of problems with side effects, but I guess the longer you take it, the higher the potential. I hope I do as well with Imuran. Thanks for the info - hope you are feeling well. Terri NV > Terri; I have always taken the prednisone and Azathioprine with my food at breakfast. I have been taking both for over 3 yrs. and started prednisone over 4 yrs ago. > > Leona > AZ > > > [ ] Imuran > > > > As part of my AIH treatment, I wWill start to take Imuran > next week when my dose of Prednisone will be reduced to > 10 mg (After being on 40 mg, then 30 mg, currently on > 20 mg - each for a week). > > So far, despite all my worries, I have had minimal side > effects on the Prednisone and actually feel great (compared > to how lousy I felt before). But I know the longer you are > on Prednisone, that's when the side effects may kick in. > > Anyhow, I'm to take 50 mg of Imuran daily along with 10 > mg of Prednisone for about 4 weeks and then will do blood > lab work to see if my levels have improved. > > My questions to anyone who has a similar situation is; > > - When you started taking the Imuran - did you notice ANY > change at all immediately, such as the Prenisone not working > as well? Any side effects kicking in immediately, etc. Also, > did any of you feel much better after taking Imuran? > > - Also, what time of day seems to be best to take this medicine? > In the morning? At bedtime? Did taking with food work better? > or on a empty stomach? Okay to take along with the Prednisone? > Did it disturb your sleep? What worked best for you. > > I know everyone's experience is different, would just like to > hear about it, if you want to share. > > Thanks - really enjoy reading everyone's posts. It sure > does help to be in touch with people who can understand > what you are going through. > > Terri > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2001 Report Share Posted July 21, 2001 Thanks for the info. Your current dose sounds close to what I will be on for a few weeks, i.e., 10 mg prednisone and 50 mg Imuran. However, I did not start out at 60 mg of prednisone. In my case, the level of inflammation was not too high, the liver had no scarring, cirrhosis, cancer, and I guess relatively healthy (which seems ironic). So, the gastro doctor thinks a short intense, quickly tapering treatment may do the trick...I hope he's right. But, I had extreme rheumatoid arthritis symptoms also before starting the prednisone...I guess they don't know yet for sure if it's the liver causing the arthritis or the arthritis aggravating the liver.... All I can say, depsite all my misgivings about prednisone, I haven't felt this good in years! It has been so nice to NOT feel aches and pains for a few weeks - but it is kind of weird...I'm just not used to feeling this good! I'm so afraid of going back to feeling lousy, once I taper down. Also, even though I feel no pain, it's kind of an artificial sense of well being - almost as though I'm hooked up to an IV with anesthetic dripping in constantly - it relieves pain, but somehow, doesn't feel natural. Guess, I can go on and on sometimes too! Take care - hope you feel better soon. Terri NV > > > > As part of my AIH treatment, I wWill start to take Imuran > > next week when my dose of Prednisone will be reduced to > > 10 mg (After being on 40 mg, then 30 mg, currently on > > 20 mg - each for a week). > > > > So far, despite all my worries, I have had minimal side > > effects on the Prednisone and actually feel great (compared > > to how lousy I felt before). But I know the longer you are > > on Prednisone, that's when the side effects may kick in. > > > > Anyhow, I'm to take 50 mg of Imuran daily along with 10 > > mg of Prednisone for about 4 weeks and then will do blood > > lab work to see if my levels have improved. > > > > My questions to anyone who has a similar situation is; > > > > - When you started taking the Imuran - did you notice ANY > > change at all immediately, such as the Prenisone not working > > as well? Any side effects kicking in immediately, etc. Also, > > did any of you feel much better after taking Imuran? > > > > - Also, what time of day seems to be best to take this medicine? > > In the morning? At bedtime? Did taking with food work better? > > or on a empty stomach? Okay to take along with the Prednisone? > > Did it disturb your sleep? What worked best for you. > > > > I know everyone's experience is different, would just like to > > hear about it, if you want to share. > > > > Thanks - really enjoy reading everyone's posts. It sure > > does help to be in touch with people who can understand > > what you are going through. > > > > Terri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2001 Report Share Posted July 21, 2001 Hi Terri; I take 100mg azathioprine and right now 8mg pred. Each month I go1 mg lower until I get to 5mg unless lab tests tell Dr otherwise. Each time I have tried to get off pred I have had a flare-up so Dr said no more can I go below 5mg. and will always be on azathioprine also. The idea is to be able to manage on azathioprine alone but in my case I have not. He also told me in the beginning that it is most common that if you ever get off the meds successfully it will be only a period of time before the condition will flare again. My main irritation with side effects is weight. I do have glacouma but I have had eye problems all my life so whether it came from the meds for AIH or if I would have had it eventually I don't know. I have never been on higher than 20mg. except a couple times when I had an infection and was put on a burst of pred which was a short time like for sinus infection. I also was not diagnosed and treated for AIH until 3/97 but now know that I at least have had it since '90 and was off and on pred. according to various complaints. I feel that it was in my genes since there are several in the family that have autoimmune diseases. I don't know what I did that changed the font in the process but was not my intention. Leona/ AZ AIH/Hypo-thyroid [ ] Imuran> > > > As part of my AIH treatment, I wWill start to take Imuran> next week when my dose of Prednisone will be reduced to> 10 mg (After being on 40 mg, then 30 mg, currently on> 20 mg - each for a week).> > So far, despite all my worries, I have had minimal side> effects on the Prednisone and actually feel great (compared> to how lousy I felt before). But I know the longer you are> on Prednisone, that's when the side effects may kick in.> > Anyhow, I'm to take 50 mg of Imuran daily along with 10> mg of Prednisone for about 4 weeks and then will do blood> lab work to see if my levels have improved.> > My questions to anyone who has a similar situation is;> > - When you started taking the Imuran - did you notice ANY> change at all immediately, such as the Prenisone not working> as well? Any side effects kicking in immediately, etc. Also, > did any of you feel much better after taking Imuran?> > - Also, what time of day seems to be best to take this medicine?> In the morning? At bedtime? Did taking with food work better?> or on a empty stomach? Okay to take along with the Prednisone? > Did it disturb your sleep? What worked best for you.> > I know everyone's experience is different, would just like to > hear about it, if you want to share.> > Thanks - really enjoy reading everyone's posts. It sure> does help to be in touch with people who can understand> what you are going through.> > Terri> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2001 Report Share Posted July 24, 2001 In a message dated 7/24/01 8:47:49 PM Pacific Daylight Time, TerriMM@... writes: I'm trying to decide what will be the best time of day to start taking this medication to minimize the side effects, if possible, i.e., early morning, mid-day or evening. I will take it with food no matter when I take it to be more certain it doesn't upset my stomach.... Teri, it's very important that you take prednisone in the morning, all at once, at the same time every day. It's most effective before 9 a.m. Perhaps you were speaking of dosage time for Imuran. I don't know whether timing matters for Imuran. Harper (AIH 5/00) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2001 Report Share Posted July 24, 2001 Thanks for the info. I'm supposed to start Imuran tomorrow, at which point I will be down to 10 mg of prednisone (down originally from 40, 30 and 20 reduced weekly). I will take 10 mg of prednisone for at least 4 more weeks and will then have lab work done, at which point, they will evaluate if I can decrease prednisone or, maybe get off of it gradually. I've been reading everything I can find on the internet about this drug (Imuran) and I'm really scared about starting it. I also have read on this board people who are doing very well on it...., but I guess the " bad " stuff sticks in my mind. My real concern is the cancer link...as you can be doing well on it, but it can be setting you up for cancer later on...if I understood the information correctly. Of course, I was not happy about starting prednisone, but to tell you the truth, on the dosing schedule I've been on, it has done nothing but make me feel great (I was so sick before starting). But, I know the longer you are on it, the more the " side effects " will kick in. I'm trying to decide what will be the best time of day to start taking this medication to minimize the side effects, if possible, i.e., early morning, mid-day or evening. I will take it with food no matter when I take it to be more certain it doesn't upset my stomach.... Sorry, about going on and on....I'm feel like I'm on a ledge right now and don't know if I should jump off or not! Hope you are feeling better, I guess you don't have AIH? What is PSC and UC? Sorry, don't know all the lingo on this board yet! Best of luck to you and everyone else in getting well! > Terri, > I don't post much. I've been dx with PSC and UC., so I belong to both > groups. For about 4 or 5 months dr. thought I had AIH, so I was on Pred > and imuran. I stopped imuran abruptly when they correctly dx me. They > reduced my pred too fast, and that made me very sick They had to but me > back on after being sick for 6 weeks. I didn't respond well to the > typical drugs for for Ulcerative colitis, so they put me back on the > imuran (sometimes used for UC). After being on it for about 4 days, I > suddenly had a violent reaction to it (vomitting and diarreha) took me > two days and ten pounds to figure out it was the imuran. Just thought > I'd weigh in with my experience. BTW, I started losing my hair (major > thinning) before any meds and dx. I thing the liver disease does that > and the meds just aggravate it. For what it's worth. Cheryl 42, PSC, UC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2001 Report Share Posted July 25, 2001 I'm speaking about Imuran - I have been taking prednisone for over three weeks, currently down to 10 mg daily (beginning today). I take prednisone in the morning, usually about 6:00 a.m. with food. Still haven' taken my first dose of Imuran today - figure I have all day to decide. May wait until tomorrow, as I will be on vacation and won't have to go to work - so, if there any immediate effects - at least I will be home. I'm also thinking about calling my doctor to see if they can do lab tests BEFORE I start the Imuran - maybe I have improved enough so I won't need to take it (wishful thinking prevails!). I just feel that once I get on the Imuran roller coaster, it'll be hard to get off - just want to make sure it's really necessary for me to get on.... Terri NV > In a message dated 7/24/01 8:47:49 PM Pacific Daylight Time, TerriMM@m... > writes: > > > > I'm trying to decide what will be the best time of day to start > > taking this medication to minimize the side effects, if possible, > > i.e., early morning, mid-day or evening. I will take it with > > food no matter when I take it to be more certain it doesn't > > upset my stomach.... > > > > > > Teri, it's very important that you take prednisone in the morning, all at > once, at the same time every day. It's most effective before 9 a.m. Perhaps > you were speaking of dosage time for Imuran. I don't know whether timing > matters for Imuran. > Harper (AIH 5/00) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2001 Report Share Posted July 25, 2001 I been on Imuran for about 3 weeks now. My hept. told me it didn't matter when Imuran is taken, but is best taken with meals. I started it during suppertime, but now I am taking it during my breakfast. I will be on 100mg of Imuran and 10mg of Prednisone, until September, when the doc will start lowering my pred. I started feeling effects, flu like, from Imuran in about a week of taking it, but they were very minor, and have gone away now. BTW: I take both imuran and prednisone at the same time. Good luck -Clyde =========================================================+ Help save a life, become an organ and tissue donor today.| =========================================================+ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2001 Report Share Posted July 27, 2001 You are right, I do worry too much. But at this age, (49), I'm probably never going to change that part of me - so I try to keep my mind open as much as possible. I appreciate your comments, and you are probably right - most likely, none of those things I'm worried about will happen - but I also believe in prevention as much as as possible, and if my case is not as serious - then maybe it doesn't need as much medication. I believe that sometimes doctors automatically go with a certain regimine that is successful for most, but may not always be necessary for everyone. I agree, benefit vs. risk, should always be considered - just want to make sure that the risk in my case is really necessary. My doctor's office called this morning and he is going to let me do more lab work before I start Imuran. At that point, if the tests indicate the need - I will proceed with the Imuran treatment. Even though I worry myself to distraction, I'm also a realist and will not take the risk of NOT doing what the doctor prescribes if the evidence is there. I read about cellcept and understand it too has many side effects, but others on this board seem to feel it is better...? Guess they all have the same types of side effects. Thanks again for your information, you are very well versed on the subject. I probably will end up on the Imuran, but at least I will feel that I explored every avenue before taking it - and then I'll probably be the one to tell others not to worry about taking it! Have a good day! Terri NV > > > Terri, > > > I don't post much. I've been dx with PSC and UC., so I belong to > > both > > > groups. For about 4 or 5 months dr. thought I had AIH, so I was on > > Pred > > > and imuran. I stopped imuran abruptly when they correctly dx me. > > They > > > reduced my pred too fast, and that made me very sick They had to > > but me > > > back on after being sick for 6 weeks. I didn't respond well to the > > > typical drugs for for Ulcerative colitis, so they put me back on the > > > imuran (sometimes used for UC). After being on it for about 4 days, > > I > > > suddenly had a violent reaction to it (vomitting and diarreha) took > > me > > > two days and ten pounds to figure out it was the imuran. Just > > thought > > > I'd weigh in with my experience. BTW, I started losing my hair > > (major > > > thinning) before any meds and dx. I thing the liver disease does > > that > > > and the meds just aggravate it. For what it's worth. Cheryl 42, > > PSC, UC > > Terri.... you worry too much.. nothing has happened to you yet...and maybe never will... be thankful... you seem to have a mild condition which can easily be treated > Imuran is an antisuppressant and ALL immunosuppressants do just that... suppress the immune system... ergo you are at a greater risk than those with a healthier immune system to the development of certain kinds of cancer.... this does not mean you will get cancer only that your odds are better.... also it usually takes many years for those cancers to develop if they do at all.... medicine is a practice of risk vs. benefit.... here the risk is low compared to the benefit... Any immuno --cyclosporine, cellcept, prograf and even prednisone offer an increased risk of cancer... but AIH left untreated will kill you most likely in less than 10 years... > Have positive thoughts and don`t sweat the small stuff ...you`ll be just fine.. > My prayers are with you.. > Jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2001 Report Share Posted July 27, 2001 Is anyone from the St. Louis Mo area? I am curious to know who is treating you? Toni (AIH 6/01) >>> TerriMM@... 07/27/01 11:50AM >>> You are right, I do worry too much. But at this age, (49), I'm probably never going to change that part of me - so I try to keep my mind open as much as possible. I appreciate your comments, and you are probably right - most likely, none of those things I'm worried about will happen - but I also believe in prevention as much as as possible, and if my case is not as serious - then maybe it doesn't need as much medication. I believe that sometimes doctors automatically go with a certain regimine that is successful for most, but may not always be necessary for everyone. I agree, benefit vs. risk, should always be considered - just want to make sure that the risk in my case is really necessary. My doctor's office called this morning and he is going to let me do more lab work before I start Imuran. At that point, if the tests indicate the need - I will proceed with the Imuran treatment. Even though I worry myself to distraction, I'm also a realist and will not take the risk of NOT doing what the doctor prescribes if the evidence is there. I read about cellcept and understand it too has many side effects, but others on this board seem to feel it is better...? Guess they all have the same types of side effects. Thanks again for your information, you are very well versed on the subject. I probably will end up on the Imuran, but at least I will feel that I explored every avenue before taking it - and then I'll probably be the one to tell others not to worry about taking it! Have a good day! Terri NV > > > Terri, > > > I don't post much. I've been dx with PSC and UC., so I belong to > > both > > > groups. For about 4 or 5 months dr. thought I had AIH, so I was on > > Pred > > > and imuran. I stopped imuran abruptly when they correctly dx me. > > They > > > reduced my pred too fast, and that made me very sick They had to > > but me > > > back on after being sick for 6 weeks. I didn't respond well to the > > > typical drugs for for Ulcerative colitis, so they put me back on the > > > imuran (sometimes used for UC). After being on it for about 4 days, > > I > > > suddenly had a violent reaction to it (vomitting and diarreha) took > > me > > > two days and ten pounds to figure out it was the imuran. Just > > thought > > > I'd weigh in with my experience. BTW, I started losing my hair > > (major > > > thinning) before any meds and dx. I thing the liver disease does > > that > > > and the meds just aggravate it. For what it's worth. Cheryl 42, > > PSC, UC > > Terri.... you worry too much.. nothing has happened to you yet...and maybe never will... be thankful... you seem to have a mild condition which can easily be treated > Imuran is an antisuppressant and ALL immunosuppressants do just that... suppress the immune system... ergo you are at a greater risk than those with a healthier immune system to the development of certain kinds of cancer.... this does not mean you will get cancer only that your odds are better.... also it usually takes many years for those cancers to develop if they do at all.... medicine is a practice of risk vs. benefit.... here the risk is low compared to the benefit... Any immuno --cyclosporine, cellcept, prograf and even prednisone offer an increased risk of cancer... but AIH left untreated will kill you most likely in less than 10 years... > Have positive thoughts and don`t sweat the small stuff ...you`ll be just fine.. > My prayers are with you.. > Jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2001 Report Share Posted July 27, 2001 Antonia, I go to a Dr. Fallah. He is at Washington University in St. Louis. School of Medicine. He dignois me with PBC a month ago. He did a liver bisopy. I really like him, and he answer any thing you want to ask, and he is honest with you. --- Antonia Ponder <amp@...> wrote: > Is anyone from the St. Louis Mo area? I am curious > to know who is treating you? > > Toni (AIH 6/01) > > >>> TerriMM@... 07/27/01 11:50AM >>> > > You are right, I do worry too much. But at this > age, > (49), I'm probably never going to change that part > of > me - so I try to keep my mind open as much as > possible. > > I appreciate your comments, and you are probably > right - > most likely, none of those things I'm worried about > will > happen - but I also believe in prevention as much as > > as possible, and if my case is not as serious - then > > maybe it doesn't need as much medication. I believe > that > sometimes doctors automatically go with a certain > regimine > that is successful for most, but may not always be > necessary > for everyone. I agree, benefit vs. risk, should > always be > considered - just want to make sure that the risk in > > my case is really necessary. > > My doctor's office called this morning and he is > going to > let me do more lab work before I start Imuran. At > that point, > if the tests indicate the need - I will proceed with > the Imuran > treatment. Even though I worry myself to > distraction, I'm > also a realist and will not take the risk of NOT > doing what > the doctor prescribes if the evidence is there. > > I read about cellcept and understand it too has many > side effects, > but others on this board seem to feel it is > better...? Guess they > all have the same types of side effects. > > Thanks again for your information, you are very well > versed on the > subject. I probably will end up on the Imuran, but > at least I will > feel that I explored every avenue before taking it - > and then > I'll probably be the one to tell others not to worry > about taking it! > > Have a good day! > > Terri > NV > > > > > > > > > Terri, > > > > I don't post much. I've been dx with PSC and > UC., so I belong > to > > > both > > > > groups. For about 4 or 5 months dr. thought I > had AIH, so I was > on > > > Pred > > > > and imuran. I stopped imuran abruptly when > they correctly dx > me. > > > They > > > > reduced my pred too fast, and that made me > very sick They had > to > > > but me > > > > back on after being sick for 6 weeks. I didn't > respond well to > the > > > > typical drugs for for Ulcerative colitis, so > they put me back > on the > > > > imuran (sometimes used for UC). After being on > it for about 4 > days, > > > I > > > > suddenly had a violent reaction to it > (vomitting and diarreha) > took > > > me > > > > two days and ten pounds to figure out it was > the imuran. Just > > > thought > > > > I'd weigh in with my experience. BTW, I > started losing my hair > > > (major > > > > thinning) before any meds and dx. I thing the > liver disease > does > > > that > > > > and the meds just aggravate it. For what it's > worth. Cheryl 42, > > > PSC, UC > > > > Terri.... you worry too much.. nothing has > happened to you > yet...and maybe never will... be thankful... you > seem to have a mild > condition which can easily be treated > > Imuran is an antisuppressant and ALL > immunosuppressants do just > that... suppress the immune system... ergo you are > at a greater risk > than those with a healthier immune system to the > development of > certain kinds of cancer.... this does not mean you > will get cancer > only that your odds are better.... also it usually > takes many years > for those cancers to develop if they do at all.... > medicine is a > practice of risk vs. benefit.... here the risk is > low === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2001 Report Share Posted July 27, 2001 Antonia, I go to a Dr. Fallah. He is at Washington University in St. Louis. School of Medicine. He dignois me with PBC a month ago. He did a liver bisopy. I really like him, and he answer any thing you want to ask, and he is honest with you. --- Antonia Ponder <amp@...> wrote: > Is anyone from the St. Louis Mo area? I am curious > to know who is treating you? > > Toni (AIH 6/01) > > >>> TerriMM@... 07/27/01 11:50AM >>> > > You are right, I do worry too much. But at this > age, > (49), I'm probably never going to change that part > of > me - so I try to keep my mind open as much as > possible. > > I appreciate your comments, and you are probably > right - > most likely, none of those things I'm worried about > will > happen - but I also believe in prevention as much as > > as possible, and if my case is not as serious - then > > maybe it doesn't need as much medication. I believe > that > sometimes doctors automatically go with a certain > regimine > that is successful for most, but may not always be > necessary > for everyone. I agree, benefit vs. risk, should > always be > considered - just want to make sure that the risk in > > my case is really necessary. > > My doctor's office called this morning and he is > going to > let me do more lab work before I start Imuran. At > that point, > if the tests indicate the need - I will proceed with > the Imuran > treatment. Even though I worry myself to > distraction, I'm > also a realist and will not take the risk of NOT > doing what > the doctor prescribes if the evidence is there. > > I read about cellcept and understand it too has many > side effects, > but others on this board seem to feel it is > better...? Guess they > all have the same types of side effects. > > Thanks again for your information, you are very well > versed on the > subject. I probably will end up on the Imuran, but > at least I will > feel that I explored every avenue before taking it - > and then > I'll probably be the one to tell others not to worry > about taking it! > > Have a good day! > > Terri > NV > > > > > > > > > Terri, > > > > I don't post much. I've been dx with PSC and > UC., so I belong > to > > > both > > > > groups. For about 4 or 5 months dr. thought I > had AIH, so I was > on > > > Pred > > > > and imuran. I stopped imuran abruptly when > they correctly dx > me. > > > They > > > > reduced my pred too fast, and that made me > very sick They had > to > > > but me > > > > back on after being sick for 6 weeks. I didn't > respond well to > the > > > > typical drugs for for Ulcerative colitis, so > they put me back > on the > > > > imuran (sometimes used for UC). After being on > it for about 4 > days, > > > I > > > > suddenly had a violent reaction to it > (vomitting and diarreha) > took > > > me > > > > two days and ten pounds to figure out it was > the imuran. Just > > > thought > > > > I'd weigh in with my experience. BTW, I > started losing my hair > > > (major > > > > thinning) before any meds and dx. I thing the > liver disease > does > > > that > > > > and the meds just aggravate it. For what it's > worth. Cheryl 42, > > > PSC, UC > > > > Terri.... you worry too much.. nothing has > happened to you > yet...and maybe never will... be thankful... you > seem to have a mild > condition which can easily be treated > > Imuran is an antisuppressant and ALL > immunosuppressants do just > that... suppress the immune system... ergo you are > at a greater risk > than those with a healthier immune system to the > development of > certain kinds of cancer.... this does not mean you > will get cancer > only that your odds are better.... also it usually > takes many years > for those cancers to develop if they do at all.... > medicine is a > practice of risk vs. benefit.... here the risk is > low === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2001 Report Share Posted July 27, 2001 Antonia, I go to a Dr. Fallah. He is at Washington University in St. Louis. School of Medicine. He dignois me with PBC a month ago. He did a liver bisopy. I really like him, and he answer any thing you want to ask, and he is honest with you. --- Antonia Ponder <amp@...> wrote: > Is anyone from the St. Louis Mo area? I am curious > to know who is treating you? > > Toni (AIH 6/01) > > >>> TerriMM@... 07/27/01 11:50AM >>> > > You are right, I do worry too much. But at this > age, > (49), I'm probably never going to change that part > of > me - so I try to keep my mind open as much as > possible. > > I appreciate your comments, and you are probably > right - > most likely, none of those things I'm worried about > will > happen - but I also believe in prevention as much as > > as possible, and if my case is not as serious - then > > maybe it doesn't need as much medication. I believe > that > sometimes doctors automatically go with a certain > regimine > that is successful for most, but may not always be > necessary > for everyone. I agree, benefit vs. risk, should > always be > considered - just want to make sure that the risk in > > my case is really necessary. > > My doctor's office called this morning and he is > going to > let me do more lab work before I start Imuran. At > that point, > if the tests indicate the need - I will proceed with > the Imuran > treatment. Even though I worry myself to > distraction, I'm > also a realist and will not take the risk of NOT > doing what > the doctor prescribes if the evidence is there. > > I read about cellcept and understand it too has many > side effects, > but others on this board seem to feel it is > better...? Guess they > all have the same types of side effects. > > Thanks again for your information, you are very well > versed on the > subject. I probably will end up on the Imuran, but > at least I will > feel that I explored every avenue before taking it - > and then > I'll probably be the one to tell others not to worry > about taking it! > > Have a good day! > > Terri > NV > > > > > > > > > Terri, > > > > I don't post much. I've been dx with PSC and > UC., so I belong > to > > > both > > > > groups. For about 4 or 5 months dr. thought I > had AIH, so I was > on > > > Pred > > > > and imuran. I stopped imuran abruptly when > they correctly dx > me. > > > They > > > > reduced my pred too fast, and that made me > very sick They had > to > > > but me > > > > back on after being sick for 6 weeks. I didn't > respond well to > the > > > > typical drugs for for Ulcerative colitis, so > they put me back > on the > > > > imuran (sometimes used for UC). After being on > it for about 4 > days, > > > I > > > > suddenly had a violent reaction to it > (vomitting and diarreha) > took > > > me > > > > two days and ten pounds to figure out it was > the imuran. Just > > > thought > > > > I'd weigh in with my experience. BTW, I > started losing my hair > > > (major > > > > thinning) before any meds and dx. I thing the > liver disease > does > > > that > > > > and the meds just aggravate it. For what it's > worth. Cheryl 42, > > > PSC, UC > > > > Terri.... you worry too much.. nothing has > happened to you > yet...and maybe never will... be thankful... you > seem to have a mild > condition which can easily be treated > > Imuran is an antisuppressant and ALL > immunosuppressants do just > that... suppress the immune system... ergo you are > at a greater risk > than those with a healthier immune system to the > development of > certain kinds of cancer.... this does not mean you > will get cancer > only that your odds are better.... also it usually > takes many years > for those cancers to develop if they do at all.... > medicine is a > practice of risk vs. benefit.... here the risk is > low === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2001 Report Share Posted July 27, 2001 Antonia, I go to a Dr. Fallah. He is at Washington University in St. Louis. School of Medicine. He dignois me with PBC a month ago. He did a liver bisopy. I really like him, and he answer any thing you want to ask, and he is honest with you. --- Antonia Ponder <amp@...> wrote: > Is anyone from the St. Louis Mo area? I am curious > to know who is treating you? > > Toni (AIH 6/01) > > >>> TerriMM@... 07/27/01 11:50AM >>> > > You are right, I do worry too much. But at this > age, > (49), I'm probably never going to change that part > of > me - so I try to keep my mind open as much as > possible. > > I appreciate your comments, and you are probably > right - > most likely, none of those things I'm worried about > will > happen - but I also believe in prevention as much as > > as possible, and if my case is not as serious - then > > maybe it doesn't need as much medication. I believe > that > sometimes doctors automatically go with a certain > regimine > that is successful for most, but may not always be > necessary > for everyone. I agree, benefit vs. risk, should > always be > considered - just want to make sure that the risk in > > my case is really necessary. > > My doctor's office called this morning and he is > going to > let me do more lab work before I start Imuran. At > that point, > if the tests indicate the need - I will proceed with > the Imuran > treatment. Even though I worry myself to > distraction, I'm > also a realist and will not take the risk of NOT > doing what > the doctor prescribes if the evidence is there. > > I read about cellcept and understand it too has many > side effects, > but others on this board seem to feel it is > better...? Guess they > all have the same types of side effects. > > Thanks again for your information, you are very well > versed on the > subject. I probably will end up on the Imuran, but > at least I will > feel that I explored every avenue before taking it - > and then > I'll probably be the one to tell others not to worry > about taking it! > > Have a good day! > > Terri > NV > > > > > > > > > Terri, > > > > I don't post much. I've been dx with PSC and > UC., so I belong > to > > > both > > > > groups. For about 4 or 5 months dr. thought I > had AIH, so I was > on > > > Pred > > > > and imuran. I stopped imuran abruptly when > they correctly dx > me. > > > They > > > > reduced my pred too fast, and that made me > very sick They had > to > > > but me > > > > back on after being sick for 6 weeks. I didn't > respond well to > the > > > > typical drugs for for Ulcerative colitis, so > they put me back > on the > > > > imuran (sometimes used for UC). After being on > it for about 4 > days, > > > I > > > > suddenly had a violent reaction to it > (vomitting and diarreha) > took > > > me > > > > two days and ten pounds to figure out it was > the imuran. Just > > > thought > > > > I'd weigh in with my experience. BTW, I > started losing my hair > > > (major > > > > thinning) before any meds and dx. I thing the > liver disease > does > > > that > > > > and the meds just aggravate it. For what it's > worth. Cheryl 42, > > > PSC, UC > > > > Terri.... you worry too much.. nothing has > happened to you > yet...and maybe never will... be thankful... you > seem to have a mild > condition which can easily be treated > > Imuran is an antisuppressant and ALL > immunosuppressants do just > that... suppress the immune system... ergo you are > at a greater risk > than those with a healthier immune system to the > development of > certain kinds of cancer.... this does not mean you > will get cancer > only that your odds are better.... also it usually > takes many years > for those cancers to develop if they do at all.... > medicine is a > practice of risk vs. benefit.... here the risk is > low === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2001 Report Share Posted August 2, 2001 Imuran It would be interesting to note how many list members have contracted cancer after being put on Imuran. I contracted Ovarian cancer after being put on Imuran, and I note that Sylvana also contracted cancer. This survey could be interesting to the List. After contracting ovarian cancer, I was switched to Cellcept, low dose, which has worked fine with no noted side effects. Jeanne L Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2001 Report Share Posted August 2, 2001 I'm still waiting to hear from my doctor about starting Imuran. Went in for additional blood lab work last Friday. Hopefully, I won't have to start taking it. Does Cellcept have some the same side effects? Can it also possibly lead to cancer? What I read about it awhile ago...seemed to indicate it too had many of the same side effects. Hope you are doing well with the cancer battle and also fighting the AIH as well. Take care Terri NV > > Imuran > > > It would be interesting to note how many list members > have contracted cancer after being put on Imuran. > > I contracted Ovarian cancer after being put on Imuran, and > I note that Sylvana also contracted cancer. This survey > could be interesting to the List. > > After contracting ovarian cancer, I was switched to Cellcept, > low dose, which has worked fine with no noted side effects. > > Jeanne L Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2001 Report Share Posted August 2, 2001 Hi Jeanne L, I was diagnosed with AIH Jan 2000 and started on the recommended Imuran 50mg, Prednisone 40mg. I have since been increased to Imuran 100mg , but Pred down to 10mg. April, 2001, I was found to have cervical cancer and underwent a hysterectomy (I am 45), If I may, I quote Ed Nakamura : "From my reading of the possibility of cancer, it is my opinion that the immunosuppressant isn't the cause of the cancer. One has the cancer already, but by taking an immunosuppressant, what ever cancer fighter you had in your system is either eliminated or reduced by the immunosuppressant." Jeannne, I cannot say that my cancer was due to the immunosuppressants, and I do not want to advise anyone on immunosuppressants to stop taking them...they have otherwise kept me alive from the AIH anyway. I think as medicine begins to recognize the autoimmune diseases as the newest, most urgent concern, we will start to get more answers. Hopefully, the autoimmune diseases will get as much attention from the private sector as well as the government...there has certainly been paid more attention to AIDS; we deserve to live as well. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2001 Report Share Posted August 3, 2001 Received good new from my latest lab tests, note from my doctor says, " liver enzymes have come down alot, one normal, one close to normal... " Have an appointment today to find out if I will continue on Prednisone, and if so, how many milligrams - currently, on 10 mg, hope I can decrease. I would assume that since my lab work is better, I will not have to start on the Imuran - which is a big relief to me. Of course, that is not to say that in the future, if I flare up again, I won't have to take it - but at least I avoided it this time. Also, I have been taking Milk Thistle all along... started shortly before starting my Prednisone treatment. I know the Prednisone is the main cause of my improvement, but I really feel that the Milk Thistle may have also helped my liver to deal with the inflammation (only my personal feeling). While I'm not advocating that anyone not follow your doctor's recommendations, please be sure to question anything that you feel uncertain about. In my particular case, I was not due for lab work until 4 weeks after starting the Imuran (as initially when I started treatment I was pretty ill and I'm sure my doctor thought I would need to be on it). But, when I felt better and read about all the side effects of Imuran, I really did not want to start taking it, unless it was absolutely necessary. So, I pretty much insisted that I get more lab work before starting. If I hadn't, I would have taken that medication for 4 weeks without really needing to. Of course, I realize that down the road, I most likely will " flare up " again and it may be necessary for me to take it then - at which point - if the evidence is there - I would take it. I know everyone's situation is different and I'm not suggesting that anyone change anything - just hope as patients, we can all help each other and be really involved with our treatment. Doctors, God bless them, can't always have all the answers all the time. Now, I have to find out what my rheumatologist wants to do about my rheumatoid arthritis.....here I go again! Hope everyone has a good day and best of health to all! Terri NV > > > > Imuran > > > > > > It would be interesting to note how many list members > > have contracted cancer after being put on Imuran. > > > > I contracted Ovarian cancer after being put on Imuran, and > > I note that Sylvana also contracted cancer. This survey > > could be interesting to the List. > > > > After contracting ovarian cancer, I was switched to Cellcept, > > low dose, which has worked fine with no noted side effects. > > > > Jeanne L Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2001 Report Share Posted September 26, 2001 In a message dated 9/26/01 8:13:07 PM Pacific Daylight Time, majuli@... writes: I have never read or been told that Imuran (Azathioprine) dosage was (should be) based on weight. I weight 120 lbs but am only taking 50mg. Can anyone tell me weight per pound or source of dosage info? Thanks, KayK in Austin, AIH and AIC I hadn't heard of a weight relationship for Imuran, but maybe it exists. I weighed 130 when I started Imuran at 100 mgs, and at 170 it's still 100. Harper (AIH 5/00) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2001 Report Share Posted September 27, 2001 For what it's worth this is what is on the Patient Information Leaflet that came with my prescribed Imuran tablets. 'The usual daily dosage of Imuran is, for adults, 1-5mg per kilogram body weight per day and, for children, 1-3mg per kilogram bodyweight per day. The usual dosage for elderly patients should be at the lower end of the dosage range for adults.' That's quite a range; I weigh 217lb which is 98kg so I could be anything from 100mg to 500mg per day of Imuran! I'm actually on 100mg (+10mg of pred). With a dosage to weight ratio like that it's no wonder that not many people have heard of it! As for giving up work because what AIH is doing to you, it's obviously a personal thing and a difficult one. I've actually given up my job (I'm 51). I made the decision that life's too short and that I could do without and my liver could certainly do without the stresses and strains that came along with my job as long as I could continue to afford a reasonable lifestyle. I'm looking to see out the next year or eighteen months to see how AIH and me get along and where I end up with prednisone and imuran; after that I may pick up on something. Everybody's situation is different both in terms of the disease and personal circumstances but this what I'm going to try and do anyway. Best regards (AIH March 2001) Re: [ ] Imuran In a message dated 9/26/01 8:13:07 PM Pacific Daylight Time, majuli@... writes: I have never read or been told that Imuran (Azathioprine) dosage was (should be) based on weight. I weight 120 lbs but am only taking 50mg. Can anyone tell me weight per pound or source of dosage info? Thanks, KayK in Austin, AIH and AICI hadn't heard of a weight relationship for Imuran, but maybe it exists. I weighed 130 when I started Imuran at 100 mgs, and at 170 it's still 100. Harper (AIH 5/00) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2001 Report Share Posted September 27, 2001 I had never been told that Imuran was based on weight either. I weighed 125 when I started at 100mg of Imuran. Now I weigh 160 (because of the lovely prednisone)and I'm still taking 100mg of Imuran. I think I will ask my doctor when I go on the 3rd of October if it has anything to do with weight. Philadelphia, PA >From: flatcat9@... >Reply- > >Subject: Re: [ ] Imuran >Date: Thu, 27 Sep 2001 00:12:21 EDT > >In a message dated 9/26/01 8:13:07 PM Pacific Daylight Time, >majuli@... writes: > > > > I have never read or been told that Imuran (Azathioprine) dosage was > > (should be) based on weight. I weight 120 lbs but am only taking 50mg. >Can > > anyone tell me weight per pound or source of dosage info? > > > > Thanks, > > > >I hadn't heard of a weight relationship for Imuran, but maybe it exists. I >weighed 130 when I started Imuran at 100 mgs, and at 170 it's still 100. >Harper (AIH 5/00) _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2001 Report Share Posted September 27, 2001 I was told that the 6MP was based on weight, but was not told that Imuran was based on weight. Could be that it is though! debby Re: [ ] Imuran In a message dated 9/26/01 8:13:07 PM Pacific Daylight Time, majuli@... writes: I have never read or been told that Imuran (Azathioprine) dosage was (should be) based on weight. I weight 120 lbs but am only taking 50mg. Can anyone tell me weight per pound or source of dosage info? Thanks, KayK in Austin, AIH and AICI hadn't heard of a weight relationship for Imuran, but maybe it exists. I weighed 130 when I started Imuran at 100 mgs, and at 170 it's still 100. Harper (AIH 5/00) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2002 Report Share Posted August 15, 2002 Thanks, Holly. That information does help. My doctor made a note of my lymphocyte count, which was 36, when he decided to up the Imuran. I have been getting copies of all my labs since my doctors are 90 miles away and only receive them by fax. I'm not sure what ALL the numbers mean, but I look at the most important ones: bili, AST, ALT. My labs have been weekly lately and will now decrease to monthly. Annette Re: [ ] Hello > > > hi karen... my name is karen from chas ... dx march/ 02... i too had been >very sick they thought it was meds then hep a ... then my bili started >climbing i was hospitalized in 3 dif hospitals... i went for the hep check >up today ... if my numbers look good tomorrow i may go down 5 mg pred and >increase immuran 50 more mg...my pcp is fri.. lately i have been getting >"tremors" i call them shakes...ive also been diagnosed with cervical >radialitis and facet dysfunction,as of aug 15 i am no longer able to keep my >employee status ... i get upset but i know i have everyone here ... it has >been scary because so much is happening to me but i now have a great group >of drs who work together and know each other...my biggest mistakethru all of >this is my pcp never discussed what he farmed me out for....no my new pcp >gets all reports and is trying to fix the layers... i know how you feel but >this group has been the best thing for me personnaly ...if i can help please >let me know....take care ...karen/chas.s.c > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2002 Report Share Posted August 15, 2002 - Thanks for the feedback. Sounds like the dosage level is pretty standard. - Annette -----Original Message-----From: NKS52@... [mailto:NKS52@...]Sent: Wednesday, August 14, 2002 6:54 PM Subject: Re: [ ] HelloAnnette,I've been on 100 mg of imuran since march. I started on 50 mg in January when I was first diagnosed. I'm still on the prednisone, but hope to be off this winter. I haven't noticed any side effects from the imuran, but the prednisone has definitely made me a moody person!!! Was going to say B____h but thought that was a little strong. I also gained some weight, but can deal with that, knowing I'll eventually lose it. The mood swings are driving me and my family crazy!!! The only thing I did notice with the imuran is I definitely stay away from people who are not feeling well. I learned the hard way the first couple of months with three back to back horrible colds!!! Hope this helps.K in Tahoe Quote Link to comment Share on other sites More sharing options...
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