Guest guest Posted March 16, 2005 Report Share Posted March 16, 2005 Mike, I agree. It is highly improbable that anyone with a severe CPT defect would get through such serious illness without a major episode of muscle breakdown, including myoglobinuria. Partials are much more manageable. I'm glad you are recovering. Sorry, I can't help with your question on Imuran. Maybe someone else can. Barbara _____ From: lord_mike_the_great Sent: Wednesday, March 16, 2005 4:27 PM To: Subject: Imuran (azothriopine) I have a partial CPT-II defect and also an adrenal disease known as primary hyperaldosteronism. Considering the incredible physical stress I was under, and the amount of steroids I was on in the hospital, the fact that I didn't have myoglobinuria probably suggests that the CPT really is partial and I problaby shouldn't worry too much. http://us.adserver.yahoo.com/l?M=298184.6191685.7192823.3001176/D=grphealth /S=:HM/A=2593423/rand=988568229> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2005 Report Share Posted March 16, 2005 Mike, I agree. It is highly improbable that anyone with a severe CPT defect would get through such serious illness without a major episode of muscle breakdown, including myoglobinuria. Partials are much more manageable. I'm glad you are recovering. Sorry, I can't help with your question on Imuran. Maybe someone else can. Barbara _____ From: lord_mike_the_great Sent: Wednesday, March 16, 2005 4:27 PM To: Subject: Imuran (azothriopine) I have a partial CPT-II defect and also an adrenal disease known as primary hyperaldosteronism. Considering the incredible physical stress I was under, and the amount of steroids I was on in the hospital, the fact that I didn't have myoglobinuria probably suggests that the CPT really is partial and I problaby shouldn't worry too much. http://us.adserver.yahoo.com/l?M=298184.6191685.7192823.3001176/D=grphealth /S=:HM/A=2593423/rand=988568229> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2005 Report Share Posted March 16, 2005 Mike I'm sorry you had such a rough time. Colitis is not a fun thing to live with from what I hear. laurie On Wed, 16 Mar 2005 17:00:10 -0600, Barbara Seaman wheatchild@...> wrote: > > Mike, I agree. It is highly improbable that anyone with a severe CPT defect > would get through such serious illness without a major episode of muscle > breakdown, including myoglobinuria. Partials are much more manageable. I'm > glad you are recovering. > > > > Sorry, I can't help with your question on Imuran. Maybe someone else can. > > Barbara > > > > _____ > > From: lord_mike_the_great > Sent: Wednesday, March 16, 2005 4:27 PM > To: > Subject: Imuran (azothriopine) > > > > > > > I have a partial CPT-II defect and also an adrenal disease known as > primary hyperaldosteronism. Considering the incredible physical > stress I was under, and the amount of steroids I was on in the > hospital, the fact that I didn't have myoglobinuria probably > suggests that the CPT really is partial and I problaby shouldn't > worry too much. > http://us.adserver.yahoo.com/l?M=298184.6191685.7192823.3001176/D=grphealth > /S=:HM/A=2593423/rand=988568229> > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2005 Report Share Posted March 16, 2005 Hi Mike, sorry you're going through such a tough time. I hope things get better for you real soon. I'm familiar with Imuran. It was the first drug I tried to treat my Lupus. I took it for about 6 months without helping, but additionally, I experienced NO side effects. I've taken a variety of immunosupressive drugs and they haven't effected my mito whatsoever. In fact, the MDA doc said they can actually have a beneficial effect on the mito. You have to take each case differently, so I am not in a position to tell you if you should or shouldn't be taking it. All I know is that if you have colitis, that's serious and usually warrants immunosuppressive drugs. I wish you the best ! bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2005 Report Share Posted March 17, 2005 Mike, I was on Imuran for about 2 months. At the time(about 15 years ago), my doctor believed my condition to be MS like. I did not do well on it and asked to get off almost immediately. Eventual my liver functions started to decline and the doctor finally agreed with me that it was not working. She then put me on Prednisone. I was on it for 11 years, until my Mito diagnosis. Mito effects my peripheral muscle systems. I do not have any major problems with internal organs or systems, at least not yet. I am 50 years old and I am in a wheel chair. Dave Imuran (azothriopine) > > > Anyone here know anything about this drug or it's cousin > immunosuppressants? My concern is that it makes white blood cells > go boom, and that it may be toxic to other cells and their > components as well. I am taking it for a terrible colitis that > landed me in the hospital and was stopped by a drug called Remicade > (I was 12 hours away from losing my colon). The Imuran is being > used to both prevent creation of antibodies to the Remicade (thereby > making it ineeffective) and also help keep the colon calm. It was > very angry. I wish I knew what I did to make it so mad. > > I have a partial CPT-II defect and also an adrenal disease known as > primary hyperaldosteronism. Considering the incredible physical > stress I was under, and the amount of steroids I was on in the > hospital, the fact that I didn't have myoglobinuria probably > suggests that the CPT really is partial and I problaby shouldn't > worry too much. My CO2 levels were high in the hospital, so I had > some acidosis, but considering that I hadn't really eaten in weeks, > lost 20 pounds, and had ketosis on admission, I think (I hope) that > it was due to that. Had I known at the time about it (I only got my > labs afterwards), I would have had them do a lactic acid test. > > Anyway, you guys are a great group, and I'm sorry I haven't been > around. Thanks for your help! > > Mike > > > > > > > > Medical advice, information, opinions, data and statements contained > herein are not necessarily those of the list moderators. The author of > this e mail is entirely responsible for its content. List members are > reminded of their responsibility to evaluate the content of the postings > and consult with their physicians regarding changes in their own > treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the > attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2005 Report Share Posted March 17, 2005 Mike, I was on Imuran for about 2 months. At the time(about 15 years ago), my doctor believed my condition to be MS like. I did not do well on it and asked to get off almost immediately. Eventual my liver functions started to decline and the doctor finally agreed with me that it was not working. She then put me on Prednisone. I was on it for 11 years, until my Mito diagnosis. Mito effects my peripheral muscle systems. I do not have any major problems with internal organs or systems, at least not yet. I am 50 years old and I am in a wheel chair. Dave Imuran (azothriopine) > > > Anyone here know anything about this drug or it's cousin > immunosuppressants? My concern is that it makes white blood cells > go boom, and that it may be toxic to other cells and their > components as well. I am taking it for a terrible colitis that > landed me in the hospital and was stopped by a drug called Remicade > (I was 12 hours away from losing my colon). The Imuran is being > used to both prevent creation of antibodies to the Remicade (thereby > making it ineeffective) and also help keep the colon calm. It was > very angry. I wish I knew what I did to make it so mad. > > I have a partial CPT-II defect and also an adrenal disease known as > primary hyperaldosteronism. Considering the incredible physical > stress I was under, and the amount of steroids I was on in the > hospital, the fact that I didn't have myoglobinuria probably > suggests that the CPT really is partial and I problaby shouldn't > worry too much. My CO2 levels were high in the hospital, so I had > some acidosis, but considering that I hadn't really eaten in weeks, > lost 20 pounds, and had ketosis on admission, I think (I hope) that > it was due to that. Had I known at the time about it (I only got my > labs afterwards), I would have had them do a lactic acid test. > > Anyway, you guys are a great group, and I'm sorry I haven't been > around. Thanks for your help! > > Mike > > > > > > > > Medical advice, information, opinions, data and statements contained > herein are not necessarily those of the list moderators. The author of > this e mail is entirely responsible for its content. List members are > reminded of their responsibility to evaluate the content of the postings > and consult with their physicians regarding changes in their own > treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the > attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2005 Report Share Posted March 18, 2005 > Mike, I agree. It is highly improbable that anyone with a severe CPT defect > would get through such serious illness without a major episode of muscle > breakdown, including myoglobinuria. Partials are much more manageable. I'm > glad you are recovering. > I have lost a lot of muscle, but I believe that was an effect of the high dose steroids combined with malnutrition. I lost over 20 pounds at the hospital. I didn't not have any muscle pain, cramping, or stiffness, and my serum creatinines were all quite low, so I think I was ok. They even took me off carnintine at the hospital, so I imagine that the mito doc was right when he said that the CPT was not really going to be a problem (I never believed him). Thanks, Mike > > Sorry, I can't help with your question on Imuran. Maybe someone else can. > > Barbara > > > > _____ > > From: lord_mike_the_great [mailto:lord_mike_the_great@y...] > Sent: Wednesday, March 16, 2005 4:27 PM > To: > Subject: Imuran (azothriopine) > > > > > > > I have a partial CPT-II defect and also an adrenal disease known as > primary hyperaldosteronism. Considering the incredible physical > stress I was under, and the amount of steroids I was on in the > hospital, the fact that I didn't have myoglobinuria probably > suggests that the CPT really is partial and I problaby shouldn't > worry too much. > http://us.adserver.yahoo.com/l? M=298184.6191685.7192823.3001176/D=grphealth > /S=:HM/A=2593423/rand=988568229> > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2005 Report Share Posted March 18, 2005 > > > > Mike, I agree. It is highly improbable that anyone with a severe CPT defect > > would get through such serious illness without a major episode of muscle > > breakdown, including myoglobinuria. Partials are much more manageable. I'm > > glad you are recovering. > > > > > > > > Sorry, I can't help with your question on Imuran. Maybe someone else can. > > > > Barbara > > > > > > > > _____ > > > > From: lord_mike_the_great [mailto:lord_mike_the_great@y...] > > Sent: Wednesday, March 16, 2005 4:27 PM > > To: > > Subject: Imuran (azothriopine) > > > > > > > > > > > > > > I have a partial CPT-II defect and also an adrenal disease known as > > primary hyperaldosteronism. Considering the incredible physical > > stress I was under, and the amount of steroids I was on in the > > hospital, the fact that I didn't have myoglobinuria probably > > suggests that the CPT really is partial and I problaby shouldn't > > worry too much. > > http://us.adserver.yahoo.com/l? M=298184.6191685.7192823.3001176/D=grphealth > > /S=:HM/A=2593423/rand=988568229> > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2005 Report Share Posted March 18, 2005 Thanks, bug! (bug???) That puts my mind at ease. Mike > > Hi Mike, sorry you're going through such a tough time. I hope things > get better for you real soon. I'm familiar with Imuran. It was the > first drug I tried to treat my Lupus. I took it for about 6 months > without helping, but additionally, I experienced NO side effects. > I've taken a variety of immunosupressive drugs and they haven't > effected my mito whatsoever. In fact, the MDA doc said they can > actually have a beneficial effect on the mito. You have to take > each case differently, so I am not in a position to tell you if you > should or shouldn't be taking it. All I know is that if you have > colitis, that's serious and usually warrants immunosuppressive drugs. > I wish you the best ! > > bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2005 Report Share Posted March 19, 2005 Hi, Mike I do know what you are going through as I too suffered from colitis, IBS, perforated ulcer, you name in gastro wise and I have had it. I fortunately, at least for the present, am able to put my meds for colitis on the PRN side of the form where I fill out my med list. I do not put them away as I feel safer if I leave them on the left hand side of the shelf in the kitchen cabinet where I keep my meds. The everyday are kept on the right hand side, the twice daily I turn upside down so I know for sure I took the am dose. When you get to be 69 you have to figure out a way to take what you need and still kow that you are not taking more than the prescribed dosage. Hang in there an always know exactly how far it is to the next rest area, truck stop, gift shop or just any port in the " storm " . I hated to try to travel by car so we finally got a Dodge conversion van, small but equipped with it's own restroom, husband (God love him)loved to take off and go from Topeka to one of the Missouri lakes fishing. The worst was when he wanted to trout fish that meant Branson. We always stopped half way so I could take a shower and rest. I was glad we went as often as we did as I lost him to cancer in January, 2002. Your friend, Dolores lord_mike_the_great lord_mike_the_great@...> wrote: > > > > Mike, I agree. It is highly improbable that anyone with a severe CPT defect > > would get through such serious illness without a major episode of muscle > > breakdown, including myoglobinuria. Partials are much more manageable. I'm > > glad you are recovering. > > > > > > > > Sorry, I can't help with your question on Imuran. Maybe someone else can. > > > > Barbara > > > > > > > > _____ > > > > From: lord_mike_the_great [mailto:lord_mike_the_great@y...] > > Sent: Wednesday, March 16, 2005 4:27 PM > > To: > > Subject: Imuran (azothriopine) > > > > > > > > > > > > > > I have a partial CPT-II defect and also an adrenal disease known as > > primary hyperaldosteronism. Considering the incredible physical > > stress I was under, and the amount of steroids I was on in the > > hospital, the fact that I didn't have myoglobinuria probably > > suggests that the CPT really is partial and I problaby shouldn't > > worry too much. > > http://us.adserver.yahoo.com/l? M=298184.6191685.7192823.3001176/D=grphealth > > /S=:HM/A=2593423/rand=988568229> > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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