Guest guest Posted April 9, 2011 Report Share Posted April 9, 2011 Are you taking milk thistle, I started taking it when my liver tests went up and there almost normal, I take one every day. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2011 Report Share Posted April 9, 2011 I'll ask my Dr about it, I don't know about milk thistle - thanks for the suggestion xo D > > Are you taking milk thistle, I started taking it when my liver tests went up and there almost normal, I take one every day. > > On Apr 9, 2011 6:29 AM, " Sutherland " wrote: > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2011 Report Share Posted April 10, 2011 , apparently you use different lab test names, so not sure how that corresponds with ours. Whatever, that's a significant increase. Although pretty much all drugs are detoxed thru the liver, I wasn't aware of Imuran being a particular problem, whereas Mtx is known to be hard on the liver. I guess there is something about the Imuran that your system can't handle. I don't recall any members posting about liver problems with Imuran (I believe is taking it & has a long history of liver disease), although several have had to stop it due to the effect on their WBC (white blood cell) count. I think Marla has already advised milk thistle. Like all supplements, you want to get it from a trusted company or pharmacy. I started out on Pred, added Imuran to decrease the Pred. After 2+ years, tapered off the Pred, then a couple of months later stopped the Imuran. After a few weeks I felt the fatigue, tremors & neuropathy were getting worse, so was started on Mtx. My local doc put me on 25mg weekly, but when I saw Dr. Baughman at the University of Cincinnati, Ohio, he recommended reducing it to 15mg. He has published a lot of research on sarc & said that their studies had shown no benefit above 15mg, while the increased dosage increased liver toxicity. So my local doc agreed & reduced the dosage, which I took for 2 years. My symptoms stabilized & have been stable for the past 4-5 years. Ramblin' RoseCo-owner/Moderator "I child-proofed my home and they STILL get in!" (Bumper sticker) > To: Neurosarcoidosis > Date: Sat, 9 Apr 2011 15:23:23 +1000> Subject: LFT> > I had my monthly blood test yesterday (Friday), and got a call in the evening from my GP (PCP) - my liver function result (gamma GT) was through the roof! 400!! (< 50 or so is normal). I'd been moved from Methotrexate to Imuran when my LFT test was at 150 - so I'm rather shocked that it's gone up from 150 to 400 in a month on Imuran! My GP said to go off Imuran immediately, and call my Immunologist first thing Monday.> > So I suppose I'm going to need yet another immune suppressant to try, or just go back on a higher dose of Pred :/ > Have any others had trouble coping with the immune suppressant meds? I'm really not having any luck so far ... what else is there to try?> > One good thing - I had the best sleep in weeks after not taking Imuran ...> > Sigh> > xo > > > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2011 Report Share Posted April 10, 2011 Thank you Rose - yeah, it's all a bit perplexing, as my immunologist took me off the Meth onto Imuran to give my liver a rest ... I'm getting some symptoms which may or may not be liver symptoms - nausea, itching all over, half vomiting etc .... will let you know what my immunologist says tomorrow. This is the first time I've had liver problems - I hope it's not the start of a bunch of new problems :/ This is the test I have each month : http://en.wikipedia.org/wiki/Gamma_GT Does that mention the American version of the test, too? xo > , apparently you use different lab test names, so not sure how that corresponds with ours. Whatever, that's a significant increase. Although pretty much all drugs are detoxed thru the liver, I wasn't aware of Imuran being a particular problem, whereas Mtx is known to be hard on the liver. I guess there is something about the Imuran that your system can't handle. I don't recall any members posting about liver problems with Imuran (I believe is taking it & has a long history of liver disease), although several have had to stop it due to the effect on their WBC (white blood cell) count. I think Marla has already advised milk thistle. Like all supplements, you want to get it from a trusted company or pharmacy. > > I started out on Pred, added Imuran to decrease the Pred. After 2+ years, tapered off the Pred, then a couple of months later stopped the Imuran. After a few weeks I felt the fatigue, tremors & neuropathy were getting worse, so was started on Mtx. My local doc put me on 25mg weekly, but when I saw Dr. Baughman at the University of Cincinnati, Ohio, he recommended reducing it to 15mg. He has published a lot of research on sarc & said that their studies had shown no benefit above 15mg, while the increased dosage increased liver toxicity. So my local doc agreed & reduced the dosage, which I took for 2 years. My symptoms stabilized & have been stable for the past 4-5 years. > > > Ramblin' Rose > Co-owner/Moderator > > " I child-proofed my home and they STILL get in! " (Bumper sticker) > > > > > > To: Neurosarcoidosis > > From: denise@... > > Date: Sat, 9 Apr 2011 15:23:23 +1000 > > Subject: LFT > > > > I had my monthly blood test yesterday (Friday), and got a call in the evening from my GP (PCP) - my liver function result (gamma GT) was through the roof! 400!! (< 50 or so is normal). I'd been moved from Methotrexate to Imuran when my LFT test was at 150 - so I'm rather shocked that it's gone up from 150 to 400 in a month on Imuran! My GP said to go off Imuran immediately, and call my Immunologist first thing Monday. > > > > So I suppose I'm going to need yet another immune suppressant to try, or just go back on a higher dose of Pred :/ > > Have any others had trouble coping with the immune suppressant meds? I'm really not having any luck so far ... what else is there to try? > > > > One good thing - I had the best sleep in weeks after not taking Imuran ... > > > > Sigh > > > > xo > > > > > > > > > > > > ------------------------------------ > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > The Neurosarcoidosis Community > > > > > > > > Message Archives:- > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > Members Database:- > > Listings of locations, phone numbers, and instant messengers. > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2011 Report Share Posted April 10, 2011 My immunologist thinks that it's incredibly unlikely that my liver function is getting worse from the Imuran, but he agreed with my GP's advice to come off it. The other meds I'm on shouldn't be causing any problems either. He thinks the sarcoidosis might have gone into my liver :/ And not just my gamma GT test is elevated, the other liver function tests were up too. If the Imuran was causing the problems, I should gradually start to feel better. If the sarcoid is causing the liver problems, I should gradually feel worse. Current trend over this weekend (after going off Imuran) is feeling worse. For joy. So current plan is I'll have another blood test on Friday, and have a biliary ultrasound this week. If my symptoms get worse (esp vomiting / itchiness) I'm to call my immunologist (and he can arrange for me to be admitted) or if it's after hours, just go straight to Casualty. So I don't know if I'll end up being admitted to hospital this week or not ... yaaaaaaaaaaay. xo > , apparently you use different lab test names, so not sure how that corresponds with ours. Whatever, that's a significant increase. Although pretty much all drugs are detoxed thru the liver, I wasn't aware of Imuran being a particular problem, whereas Mtx is known to be hard on the liver. I guess there is something about the Imuran that your system can't handle. I don't recall any members posting about liver problems with Imuran (I believe is taking it & has a long history of liver disease), although several have had to stop it due to the effect on their WBC (white blood cell) count. I think Marla has already advised milk thistle. Like all supplements, you want to get it from a trusted company or pharmacy. > > I started out on Pred, added Imuran to decrease the Pred. After 2+ years, tapered off the Pred, then a couple of months later stopped the Imuran. After a few weeks I felt the fatigue, tremors & neuropathy were getting worse, so was started on Mtx. My local doc put me on 25mg weekly, but when I saw Dr. Baughman at the University of Cincinnati, Ohio, he recommended reducing it to 15mg. He has published a lot of research on sarc & said that their studies had shown no benefit above 15mg, while the increased dosage increased liver toxicity. So my local doc agreed & reduced the dosage, which I took for 2 years. My symptoms stabilized & have been stable for the past 4-5 years. > > > Ramblin' Rose > Co-owner/Moderator > > " I child-proofed my home and they STILL get in! " (Bumper sticker) > > > > > > To: Neurosarcoidosis > > From: denise@... > > Date: Sat, 9 Apr 2011 15:23:23 +1000 > > Subject: LFT > > > > I had my monthly blood test yesterday (Friday), and got a call in the evening from my GP (PCP) - my liver function result (gamma GT) was through the roof! 400!! (< 50 or so is normal). I'd been moved from Methotrexate to Imuran when my LFT test was at 150 - so I'm rather shocked that it's gone up from 150 to 400 in a month on Imuran! My GP said to go off Imuran immediately, and call my Immunologist first thing Monday. > > > > So I suppose I'm going to need yet another immune suppressant to try, or just go back on a higher dose of Pred :/ > > Have any others had trouble coping with the immune suppressant meds? I'm really not having any luck so far ... what else is there to try? > > > > One good thing - I had the best sleep in weeks after not taking Imuran ... > > > > Sigh > > > > xo > > > > > > > > > > > > ------------------------------------ > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > The Neurosarcoidosis Community > > > > > > > > Message Archives:- > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > Members Database:- > > Listings of locations, phone numbers, and instant messengers. > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2011 Report Share Posted April 10, 2011 Is "Casualty" the same as the Emergency Room in the US? Ramblin' RoseCo-owner/Moderator "I child-proofed my home and they STILL get in!" (Bumper sticker) > To: Neurosarcoidosis > Date: Mon, 11 Apr 2011 14:06:09 +1000> Subject: Re: LFT> > My immunologist thinks that it's incredibly unlikely that my liver function is getting worse from the Imuran, but he agreed with my GP's advice to come off it. The other meds I'm on shouldn't be causing any problems either. He thinks the sarcoidosis might have gone into my liver :/ And not just my gamma GT test is elevated, the other liver function tests were up too. If the Imuran was causing the problems, I should gradually start to feel better. If the sarcoid is causing the liver problems, I should gradually feel worse. Current trend over this weekend (after going off Imuran) is feeling worse. For joy.> > So current plan is I'll have another blood test on Friday, and have a biliary ultrasound this week. If my symptoms get worse (esp vomiting / itchiness) I'm to call my immunologist (and he can arrange for me to be admitted) or if it's after hours, just go straight to Casualty. So I don't know if I'll end up being admitted to hospital this week or not ... yaaaaaaaaaaay.> > xo > > > > > > , apparently you use different lab test names, so not sure how that corresponds with ours. Whatever, that's a significant increase. Although pretty much all drugs are detoxed thru the liver, I wasn't aware of Imuran being a particular problem, whereas Mtx is known to be hard on the liver. I guess there is something about the Imuran that your system can't handle. I don't recall any members posting about liver problems with Imuran (I believe is taking it & has a long history of liver disease), although several have had to stop it due to the effect on their WBC (white blood cell) count. I think Marla has already advised milk thistle. Like all supplements, you want to get it from a trusted company or pharmacy. > > > > I started out on Pred, added Imuran to decrease the Pred. After 2+ years, tapered off the Pred, then a couple of months later stopped the Imuran. After a few weeks I felt the fatigue, tremors & neuropathy were getting worse, so was started on Mtx. My local doc put me on 25mg weekly, but when I saw Dr. Baughman at the University of Cincinnati, Ohio, he recommended reducing it to 15mg. He has published a lot of research on sarc & said that their studies had shown no benefit above 15mg, while the increased dosage increased liver toxicity. So my local doc agreed & reduced the dosage, which I took for 2 years. My symptoms stabilized & have been stable for the past 4-5 years.> > > > > > Ramblin' Rose> > Co-owner/Moderator> > > > "I child-proofed my home and they STILL get in!" (Bumper sticker)> > > > > > > > > > > To: Neurosarcoidosis > > > > > Date: Sat, 9 Apr 2011 15:23:23 +1000> > > Subject: LFT> > > > > > I had my monthly blood test yesterday (Friday), and got a call in the evening from my GP (PCP) - my liver function result (gamma GT) was through the roof! 400!! (< 50 or so is normal). I'd been moved from Methotrexate to Imuran when my LFT test was at 150 - so I'm rather shocked that it's gone up from 150 to 400 in a month on Imuran! My GP said to go off Imuran immediately, and call my Immunologist first thing Monday.> > > > > > So I suppose I'm going to need yet another immune suppressant to try, or just go back on a higher dose of Pred :/ > > > Have any others had trouble coping with the immune suppressant meds? I'm really not having any luck so far ... what else is there to try?> > > > > > One good thing - I had the best sleep in weeks after not taking Imuran ...> > > > > > Sigh> > > > > > xo > > > > > > > > > > > > > > > > > > ------------------------------------> > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > > The Neurosarcoidosis Community> > > > > > > > > > > > Message Archives:-> > > http://groups.yahoo.com/group/Neurosarcoidosis/messages> > > > > > Members Database:-> > > Listings of locations, phone numbers, and instant messengers.> > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2011 Report Share Posted April 10, 2011 Yup > Is " Casualty " the same as the Emergency Room in the US? > > Ramblin' Rose > Co-owner/Moderator > > " I child-proofed my home and they STILL get in! " (Bumper sticker) > > > > > > To: Neurosarcoidosis > > From: denise@... > > Date: Mon, 11 Apr 2011 14:06:09 +1000 > > Subject: Re: LFT > > > > My immunologist thinks that it's incredibly unlikely that my liver function is getting worse from the Imuran, but he agreed with my GP's advice to come off it. The other meds I'm on shouldn't be causing any problems either. He thinks the sarcoidosis might have gone into my liver :/ And not just my gamma GT test is elevated, the other liver function tests were up too. If the Imuran was causing the problems, I should gradually start to feel better. If the sarcoid is causing the liver problems, I should gradually feel worse. Current trend over this weekend (after going off Imuran) is feeling worse. For joy. > > > > So current plan is I'll have another blood test on Friday, and have a biliary ultrasound this week. If my symptoms get worse (esp vomiting / itchiness) I'm to call my immunologist (and he can arrange for me to be admitted) or if it's after hours, just go straight to Casualty. So I don't know if I'll end up being admitted to hospital this week or not ... yaaaaaaaaaaay. > > > > xo > > > > > > > > > > > , apparently you use different lab test names, so not sure how that corresponds with ours. Whatever, that's a significant increase. Although pretty much all drugs are detoxed thru the liver, I wasn't aware of Imuran being a particular problem, whereas Mtx is known to be hard on the liver. I guess there is something about the Imuran that your system can't handle. I don't recall any members posting about liver problems with Imuran (I believe is taking it & has a long history of liver disease), although several have had to stop it due to the effect on their WBC (white blood cell) count. I think Marla has already advised milk thistle. Like all supplements, you want to get it from a trusted company or pharmacy. > > > > > > I started out on Pred, added Imuran to decrease the Pred. After 2+ years, tapered off the Pred, then a couple of months later stopped the Imuran. After a few weeks I felt the fatigue, tremors & neuropathy were getting worse, so was started on Mtx. My local doc put me on 25mg weekly, but when I saw Dr. Baughman at the University of Cincinnati, Ohio, he recommended reducing it to 15mg. He has published a lot of research on sarc & said that their studies had shown no benefit above 15mg, while the increased dosage increased liver toxicity. So my local doc agreed & reduced the dosage, which I took for 2 years. My symptoms stabilized & have been stable for the past 4-5 years. > > > > > > > > > Ramblin' Rose > > > Co-owner/Moderator > > > > > > " I child-proofed my home and they STILL get in! " (Bumper sticker) > > > > > > > > > > > > > > > > To: Neurosarcoidosis > > > > From: denise@... > > > > Date: Sat, 9 Apr 2011 15:23:23 +1000 > > > > Subject: LFT > > > > > > > > I had my monthly blood test yesterday (Friday), and got a call in the evening from my GP (PCP) - my liver function result (gamma GT) was through the roof! 400!! (< 50 or so is normal). I'd been moved from Methotrexate to Imuran when my LFT test was at 150 - so I'm rather shocked that it's gone up from 150 to 400 in a month on Imuran! My GP said to go off Imuran immediately, and call my Immunologist first thing Monday. > > > > > > > > So I suppose I'm going to need yet another immune suppressant to try, or just go back on a higher dose of Pred :/ > > > > Have any others had trouble coping with the immune suppressant meds? I'm really not having any luck so far ... what else is there to try? > > > > > > > > One good thing - I had the best sleep in weeks after not taking Imuran .... > > > > > > > > Sigh > > > > > > > > xo > > > > > > > > > > > > > > > > > > > > > > > > ------------------------------------ > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > > The Neurosarcoidosis Community > > > > > > > > > > > > > > > > Message Archives:- > > > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > > > > > Members Database:- > > > > Listings of locations, phone numbers, and instant messengers. > > > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2011 Report Share Posted April 11, 2011 Hi , I'm and I'm one of the moderators here in our group.. I have a horrible liver.. and possibly will have to have a liver transplant somewhere in the future..One of the other girls here, Salton she's not on much anymore but its due to the fact she's been really bad sick for the last year.. She's gonna have to have a transplant done alot sooner than me.... Both ours started off with a fatty liver.. I was always heavy but when they started me on Iv Prednisone 1000mg IV 3 days in a roll, and this happened twice, then a slow taper beginning at 90mg, this threw me into the morbid obesity..The more weight you gain the more fat is added to your liver as well.. Back last summer I lost 40lbs.. We had a horrible flood here where I live our water became contamidated and I ended up with E Coli I lost pretty close to 50 lbs in just a little over a month.. when I lost that much weight my liver enzymes became normal, without any sign of liver damage, my other labs where all normal as well.. Now, I don't know if this is the case with you or not.. But if it is, it would be much or easy to lose a few pounds than to under go a major surgery.. like a liver transplant.. I've gained all the weight back, and now my liver enzymes are once again all grossly elevated.. Hope this helps.. LFT >> > >> > I had my monthly blood test yesterday (Friday), and got a call in the >> > evening from my GP (PCP) - my liver function result (gamma GT) was >> > through the roof! 400!! (< 50 or so is normal). I'd been moved from >> > Methotrexate to Imuran when my LFT test was at 150 - so I'm rather >> > shocked that it's gone up from 150 to 400 in a month on Imuran! My GP >> > said to go off Imuran immediately, and call my Immunologist first thing >> > Monday. >> > >> > So I suppose I'm going to need yet another immune suppressant to try, >> > or just go back on a higher dose of Pred :/ >> > Have any others had trouble coping with the immune suppressant meds? >> > I'm really not having any luck so far ... what else is there to try? >> > >> > One good thing - I had the best sleep in weeks after not taking Imuran >> > ... >> > >> > Sigh >> > >> > xo >> > >> > >> > >> > >> > >> > ------------------------------------ >> > >> > ~~~~ *** ~~~ *** ~~~ *** ~~~~ >> > The Neurosarcoidosis Community >> > >> > >> > >> > Message Archives:- >> > http://groups.yahoo.com/group/Neurosarcoidosis/messages >> > >> > Members Database:- >> > Listings of locations, phone numbers, and instant messengers. >> > http://groups.yahoo.com/group/Neurosarcoidosis/database >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2011 Report Share Posted April 11, 2011 Thanks , very interesting, thanks for passing on that information. Yeah, I've put on about 12 kg since starting on the prednisolone (26 lb) ... I'm finding it extremely hard to lose this extra weight. But it would certainly be a better option than the transplant!! xo On 11/04/2011, at 4:46 PM, wrote: > Hi , I'm and I'm one of the moderators here in our group.. I > have a horrible liver.. and possibly will have to have a liver transplant > somewhere in the future..One of the other girls here, Salton she's > not on much anymore but its due to the fact she's been really bad sick for > the last year.. She's gonna have to have a transplant done alot sooner than > me.... Both ours started off with a fatty liver.. I was always heavy but > when they started me on Iv Prednisone 1000mg IV 3 days in a roll, and this > happened twice, then a slow taper beginning at 90mg, this threw me into the > morbid obesity..The more weight you gain the more fat is added to your liver > as well.. Back last summer I lost 40lbs.. We had a horrible flood here where > I live our water became contamidated and I ended up with E Coli I lost > pretty close to 50 lbs in just a little over a month.. when I lost that much > weight my liver enzymes became normal, without any sign of liver damage, my > other labs where all normal as well.. Now, I don't know if this is the case > with you or not.. But if it is, it would be much or easy to lose a few > pounds than to under go a major surgery.. like a liver transplant.. I've > gained all the weight back, and now my liver enzymes are once again all > grossly elevated.. Hope this helps.. > > LFT >>>> >>>> I had my monthly blood test yesterday (Friday), and got a call in the >>>> evening from my GP (PCP) - my liver function result (gamma GT) was >>>> through the roof! 400!! (< 50 or so is normal). I'd been moved from >>>> Methotrexate to Imuran when my LFT test was at 150 - so I'm rather >>>> shocked that it's gone up from 150 to 400 in a month on Imuran! My GP >>>> said to go off Imuran immediately, and call my Immunologist first thing >>>> Monday. >>>> >>>> So I suppose I'm going to need yet another immune suppressant to try, >>>> or just go back on a higher dose of Pred :/ >>>> Have any others had trouble coping with the immune suppressant meds? >>>> I'm really not having any luck so far ... what else is there to try? >>>> >>>> One good thing - I had the best sleep in weeks after not taking Imuran >>>> ... >>>> >>>> Sigh >>>> >>>> xo >>>> >>>> >>>> >>>> >>>> >>>> ------------------------------------ >>>> >>>> ~~~~ *** ~~~ *** ~~~ *** ~~~~ >>>> The Neurosarcoidosis Community >>>> >>>> >>>> >>>> Message Archives:- >>>> http://groups.yahoo.com/group/Neurosarcoidosis/messages >>>> >>>> Members Database:- >>>> Listings of locations, phone numbers, and instant messengers. >>>> http://groups.yahoo.com/group/Neurosarcoidosis/database >>>> >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2011 Report Share Posted April 11, 2011 , To add to , when my live enzymes went up, I was on Methotrexate, Plaqunil, and just added Remicade, so the Remicade and Methotrexate were stopped, I had a liver biopsy, same as , I was told I had a fatty liver, and if I lost weight, they would come down. I too gained like 40# fast on Pred. But the GI doctor said I could go back on both and there shouldn't be a problem, when I lose the weight they will come down. I went back on the drugs, but to Tracie's suggestion started the Milk Thistle, I have NOT lost any weight at all, in fact when put on Lyerica I gained even more, but stayed on the Milk thistle to this day, and my liver enzymes are almost normal, and they were All elevated too. So again I highly recommend the Milk Thistle, when I talked to my doctor, he said try it and see, well that was almost 2 years ago, I am on all 3 drugs again, and have been for almost 2 years. My enzymes didn't come down over night, but did so over time. I am hoping that now that I'm off the Lyerica I can lose a little weight?? Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb Hi , I'm and I'm one of the moderators here in our group.. I have a horrible liver.. and possibly will have to have a liver transplant somewhere in the future..One of the other girls here, Salton she's not on much anymore but its due to the fact she's been really bad sick for the last year.. She's gonna have to have a transplant done alot sooner than me.... Both ours started off with a fatty liver.. I was always heavy but when they started me on Iv Prednisone 1000mg IV 3 days in a roll, and this happened twice, then a slow taper beginning at 90mg, this threw me into the morbid obesity..The more weight you gain the more fat is added to your liver as well.. Back last summer I lost 40lbs.. We had a horrible flood here where I live our water became contamidated and I ended up with E Coli I lost pretty close to 50 lbs in just a little over a month.. when I lost that much weight my liver enzymes became normal, without any sign of liver damage, my other labs where all normal as well.. Now, I don't know if this is the case with you or not.. But if it is, it would be much or easy to lose a few pounds than to under go a major surgery.. like a liver transplant.. I've gained all the weight back, and now my liver enzymes are once again all grossly elevated.. Hope this helps.. LFT >> > >> > I had my monthly blood test yesterday (Friday), and got a call in the >> > evening from my GP (PCP) - my liver function result (gamma GT) was >> > through the roof! 400!! (< 50 or so is normal). I'd been moved from >> > Methotrexate to Imuran when my LFT test was at 150 - so I'm rather >> > shocked that it's gone up from 150 to 400 in a month on Imuran! My GP >> > said to go off Imuran immediately, and call my Immunologist first thing >> > Monday. >> > >> > So I suppose I'm going to need yet another immune suppressant to try, >> > or just go back on a higher dose of Pred :/ >> > Have any others had trouble coping with the immune suppressant meds? >> > I'm really not having any luck so far ... what else is there to try? >> > >> > One good thing - I had the best sleep in weeks after not taking Imuran >> > ... >> > >> > Sigh >> > >> > xo >> > >> > >> > >> > >> > >> > ------------------------------------ >> > >> > ~~~~ *** ~~~ *** ~~~ *** ~~~~ >> > The Neurosarcoidosis Community >> > >> > >> > >> > Message Archives:- >> > http://groups.yahoo.com/group/Neurosarcoidosis/messages >> > >> > Members Database:- >> > Listings of locations, phone numbers, and instant messengers. >> > http://groups.yahoo.com/group/Neurosarcoidosis/database >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2011 Report Share Posted April 11, 2011 Thanks Marla, that is very interesting ... I had a bit of a better night last night (less itching and nausea), I'm hoping it's a general trend to feeling a bit better. I will ask my Immunologist about the milk thistle when I speak with him next. xo > , > > To add to , when my live enzymes went up, I was on Methotrexate, Plaqunil, and just added Remicade, so the Remicade and Methotrexate were stopped, I had a liver biopsy, same as , I was told I had a fatty liver, and if I lost weight, they would come down. I too gained like 40# fast on Pred. But the GI doctor said I could go back on both and there shouldn't be a problem, when I lose the weight they will come down. > I went back on the drugs, but to Tracie's suggestion started the Milk Thistle, I have NOT lost any weight at all, in fact when put on Lyerica I gained even more, but stayed on the Milk thistle to this day, and my liver enzymes are almost normal, and they were All elevated too. So again I highly recommend the Milk Thistle, when I talked to my doctor, he said try it and see, well that was almost 2 years ago, I am on all 3 drugs again, and have been for almost 2 years. My enzymes didn't come down over night, but did so over time. I am hoping that now that I'm off the Lyerica I can lose a little weight?? > > Marla > > " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb > > > > > > > Hi , I'm and I'm one of the moderators here in our group.. I > have a horrible liver.. and possibly will have to have a liver transplant > somewhere in the future..One of the other girls here, Salton she's > not on much anymore but its due to the fact she's been really bad sick for > the last year.. She's gonna have to have a transplant done alot sooner than > me.... Both ours started off with a fatty liver.. I was always heavy but > when they started me on Iv Prednisone 1000mg IV 3 days in a roll, and this > happened twice, then a slow taper beginning at 90mg, this threw me into the > morbid obesity..The more weight you gain the more fat is added to your liver > as well.. Back last summer I lost 40lbs.. We had a horrible flood here where > I live our water became contamidated and I ended up with E Coli I lost > pretty close to 50 lbs in just a little over a month.. when I lost that much > weight my liver enzymes became normal, without any sign of liver damage, my > other labs where all normal as well.. Now, I don't know if this is the case > with you or not.. But if it is, it would be much or easy to lose a few > pounds than to under go a major surgery.. like a liver transplant.. I've > gained all the weight back, and now my liver enzymes are once again all > grossly elevated.. Hope this helps.. > > LFT > >> > > >> > I had my monthly blood test yesterday (Friday), and got a call in the > >> > evening from my GP (PCP) - my liver function result (gamma GT) was > >> > through the roof! 400!! (< 50 or so is normal). I'd been moved from > >> > Methotrexate to Imuran when my LFT test was at 150 - so I'm rather > >> > shocked that it's gone up from 150 to 400 in a month on Imuran! My GP > >> > said to go off Imuran immediately, and call my Immunologist first thing > >> > Monday. > >> > > >> > So I suppose I'm going to need yet another immune suppressant to try, > >> > or just go back on a higher dose of Pred :/ > >> > Have any others had trouble coping with the immune suppressant meds? > >> > I'm really not having any luck so far ... what else is there to try? > >> > > >> > One good thing - I had the best sleep in weeks after not taking Imuran > >> > ... > >> > > >> > Sigh > >> > > >> > xo > >> > > >> > > >> > > >> > > >> > > >> > ------------------------------------ > >> > > >> > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > >> > The Neurosarcoidosis Community > >> > > >> > > >> > > >> > Message Archives:- > >> > http://groups.yahoo.com/group/Neurosarcoidosis/messages > >> > > >> > Members Database:- > >> > Listings of locations, phone numbers, and instant messengers. > >> > http://groups.yahoo.com/group/Neurosarcoidosis/database > >> > > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2011 Report Share Posted April 11, 2011 Prednisone is a HORRID drug.. and although it does work to bring your numbers down to normal like you sed rate and CRP the moment you stop it, the disease starts back up, plus you have to go through the long process of tapering it again.. Plus the HORRIBLE DRUG PREDNISONE! has HORRIBLE SIDE EFFECTS one of the main ones is Weight Gain, then there your bones become brittle and will break with a simple twist of the ankle sometimes.. since I've been off Pred,, I have broken both my R ankle and my L Foot and yes it was together.. I've also fractured my R shoulder.. a really bad painful break.. My Right hand.. they need to find a drug that will cool your liver down and that will help fight the dreaded disease.. I took Imuran for 8 years.. it was the best thing I've taken for Sarc.. some do well on metho, I didn't.. I didn't do well on the malaria drug.. hope this helps! LFT >> >> > >> >> > I had my monthly blood test yesterday (Friday), and got a call in >> >> > the >> >> > evening from my GP (PCP) - my liver function result (gamma GT) was >> >> > through the roof! 400!! (< 50 or so is normal). I'd been moved from >> >> > Methotrexate to Imuran when my LFT test was at 150 - so I'm rather >> >> > shocked that it's gone up from 150 to 400 in a month on Imuran! My >> >> > GP >> >> > said to go off Imuran immediately, and call my Immunologist first >> >> > thing >> >> > Monday. >> >> > >> >> > So I suppose I'm going to need yet another immune suppressant to >> >> > try, >> >> > or just go back on a higher dose of Pred :/ >> >> > Have any others had trouble coping with the immune suppressant meds? >> >> > I'm really not having any luck so far ... what else is there to try? >> >> > >> >> > One good thing - I had the best sleep in weeks after not taking >> >> > Imuran >> >> > ... >> >> > >> >> > Sigh >> >> > >> >> > xo >> >> > >> >> > >> >> > >> >> > >> >> > >> >> > ------------------------------------ >> >> > >> >> > ~~~~ *** ~~~ *** ~~~ *** ~~~~ >> >> > The Neurosarcoidosis Community >> >> > >> >> > >> >> > >> >> > Message Archives:- >> >> > http://groups.yahoo.com/group/Neurosarcoidosis/messages >> >> > >> >> > Members Database:- >> >> > Listings of locations, phone numbers, and instant messengers. >> >> > http://groups.yahoo.com/group/Neurosarcoidosis/database >> >> > >> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2011 Report Share Posted April 11, 2011 Thank you! Yes, I'm hoping the Imuran isn't the culprit (but I must say I'm feeling a bit better today, which might indicate that the drug *is* the problem, as I've been off it for 4 days now) ... yeah, I hate the Prednisolone too!! Plus I have an artificial hip (because of congenital hip dysplasia), so I have to be extra extra careful about my bones and the risk of infection :/ I take a calcium supplement every day; my surgeon isn't happy about the prednisolone either because of its impact on bones and decreased resistance to infection. But what choice do I have? I'm sorry to hear you've had so many broken bones, that's really awful. And yeah, the weigh gain sucks doesn't it You just know that 'society in general' is judging you on appearances, and doesn't generally even consider that someone might be larger because of a medical problem. I HATE IT. xo On 12/04/2011, at 11:57 AM, wrote: > Prednisone is a HORRID drug.. and although it does work to bring your > numbers down to normal like you sed rate and CRP the moment you stop it, the > disease starts back up, plus you have to go through the long process of > tapering it again.. Plus the HORRIBLE DRUG PREDNISONE! has HORRIBLE SIDE > EFFECTS one of the main ones is Weight Gain, then there your bones become > brittle and will break with a simple twist of the ankle sometimes.. since > I've been off Pred,, I have broken both my R ankle and my L Foot and yes it > was together.. I've also fractured my R shoulder.. a really bad painful > break.. My Right hand.. they need to find a drug that will cool your liver > down and that will help fight the dreaded disease.. I took Imuran for 8 > years.. it was the best thing I've taken for Sarc.. some do well on metho, I > didn't.. I didn't do well on the malaria drug.. hope this helps! > LFT >>>>>> >>>>>> I had my monthly blood test yesterday (Friday), and got a call in >>>>>> the >>>>>> evening from my GP (PCP) - my liver function result (gamma GT) was >>>>>> through the roof! 400!! (< 50 or so is normal). I'd been moved from >>>>>> Methotrexate to Imuran when my LFT test was at 150 - so I'm rather >>>>>> shocked that it's gone up from 150 to 400 in a month on Imuran! My >>>>>> GP >>>>>> said to go off Imuran immediately, and call my Immunologist first >>>>>> thing >>>>>> Monday. >>>>>> >>>>>> So I suppose I'm going to need yet another immune suppressant to >>>>>> try, >>>>>> or just go back on a higher dose of Pred :/ >>>>>> Have any others had trouble coping with the immune suppressant meds? >>>>>> I'm really not having any luck so far ... what else is there to try? >>>>>> >>>>>> One good thing - I had the best sleep in weeks after not taking >>>>>> Imuran >>>>>> ... >>>>>> >>>>>> Sigh >>>>>> >>>>>> xo >>>>>> >>>>>> >>>>>> >>>>>> >>>>>> >>>>>> ------------------------------------ >>>>>> >>>>>> ~~~~ *** ~~~ *** ~~~ *** ~~~~ >>>>>> The Neurosarcoidosis Community >>>>>> >>>>>> >>>>>> >>>>>> Message Archives:- >>>>>> http://groups.yahoo.com/group/Neurosarcoidosis/messages >>>>>> >>>>>> Members Database:- >>>>>> Listings of locations, phone numbers, and instant messengers. >>>>>> http://groups.yahoo.com/group/Neurosarcoidosis/database >>>>>> >>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2011 Report Share Posted April 11, 2011 Yes, be very careful.. I think had issues with a bone infection, didn't you ? She can feel you in on that.. And also was on a donors list for a liver transplant.. at one time.. I don't remember for sure which bone it was seems like an elbow.. , jump in here anytime.. and feel us in on the infection you got.. Hugs, LFT>>>>>> >>>>>> I had my monthly blood test yesterday (Friday), and got a call in >>>>>> the>>>>>> evening from my GP (PCP) - my liver function result (gamma GT) was>>>>>> through the roof! 400!! (< 50 or so is normal). I'd been moved from>>>>>> Methotrexate to Imuran when my LFT test was at 150 - so I'm rather>>>>>> shocked that it's gone up from 150 to 400 in a month on Imuran! My >>>>>> GP>>>>>> said to go off Imuran immediately, and call my Immunologist first >>>>>> thing>>>>>> Monday.>>>>>> >>>>>> So I suppose I'm going to need yet another immune suppressant to >>>>>> try,>>>>>> or just go back on a higher dose of Pred :/>>>>>> Have any others had trouble coping with the immune suppressant meds?>>>>>> I'm really not having any luck so far ... what else is there to try?>>>>>> >>>>>> One good thing - I had the best sleep in weeks after not taking >>>>>> Imuran>>>>>> ...>>>>>> >>>>>> Sigh>>>>>> >>>>>> xo >>>>>> >>>>>> >>>>>> >>>>>> >>>>>> >>>>>> ------------------------------------>>>>>> >>>>>> ~~~~ *** ~~~ *** ~~~ *** ~~~~>>>>>> The Neurosarcoidosis Community>>>>>> >>>>>> >>>>>> >>>>>> Message Archives:->>>>>> http://groups.yahoo.com/group/Neurosarcoidosis/messages>>>>>> >>>>>> Members Database:->>>>>> Listings of locations, phone numbers, and instant messengers.>>>>>> http://groups.yahoo.com/group/Neurosarcoidosis/database>>>>>> >>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2011 Report Share Posted April 12, 2011 my cocktail is prednisone/metho/plaquinil I have been on it for about six years now. I am still not right. lol But I am alive. Jackie Today I Broke My Personal Record------I am Still Alive.... LFT >>> >> > >>> >> > I had my monthly blood test yesterday (Friday), and got a call in >>> >> > the >>> >> > evening from my GP (PCP) - my liver function result (gamma GT) was >>> >> > through the roof! 400!! (< 50 or so is normal). I'd been moved from >>> >> > Methotrexate to Imuran when my LFT test was at 150 - so I'm rather >>> >> > shocked that it's gone up from 150 to 400 in a month on Imuran! My >>> >> > GP >>> >> > said to go off Imuran immediately, and call my Immunologist first >>> >> > thing >>> >> > Monday. >>> >> > >>> >> > So I suppose I'm going to need yet another immune suppressant to >>> >> > try, >>> >> > or just go back on a higher dose of Pred :/ >>> >> > Have any others had trouble coping with the immune suppressant >>> >> > meds? >>> >> > I'm really not having any luck so far ... what else is there to >>> >> > try? >>> >> > >>> >> > One good thing - I had the best sleep in weeks after not taking >>> >> > Imuran >>> >> > ... >>> >> > >>> >> > Sigh >>> >> > >>> >> > xo >>> >> > >>> >> > >>> >> > >>> >> > >>> >> > >>> >> > ------------------------------------ >>> >> > >>> >> > ~~~~ *** ~~~ *** ~~~ *** ~~~~ >>> >> > The Neurosarcoidosis Community >>> >> > >>> >> > >>> >> > >>> >> > Message Archives:- >>> >> > http://groups.yahoo.com/group/Neurosarcoidosis/messages >>> >> > >>> >> > Members Database:- >>> >> > Listings of locations, phone numbers, and instant messengers. >>> >> > http://groups.yahoo.com/group/Neurosarcoidosis/database >>> >> > >>> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2011 Report Share Posted April 12, 2011 ,Yes to the liver transplant -- not on the list, just told it would be in my future. Once I lost 75 pounds, my fatty liver reversed itself and my liver enzymes went back to normal. My ammonia is back to normal, too, and I can now be off of that awful stuff, lactulose!As far as my elbow is concerned, I had a staff infection in the tissue which led to sepsis -- I had to have a good deal of the tissue scooped out and had to have a skin graft. As far as I know, though, the bones were spared. I did get enceptalopathy (sp) (infection in the brain) which also gave me a lot to recover from.My bones are also brittle from past pred. use, thus the recent bad breaks to my ankle and leg (actually the tibia broke clean through and the fibula had a spiral fracture seveal inches up the leg). I hardly twisted my ankle when my dog clipped me from behind with the rope he was on. I couldn't believe it when the foot came completely off of my leg!I, too, am on Imuran, and I believe it, too, is responsible for helping my liver enzyme level. I was told that they would put me back on prednisone only if I had a severe flare. Thank goodness for that.Hope everyone is feeling better soon,From: "topdat1@..." To: Neurosarcoidosis Sent: Tue, April 12, 2011 12:32:47 AMSubject: Re: LFT Yes, be very careful.. I think had issues with a bone infection, didn't you ? She can feel you in on that.. And also was on a donors list for a liver transplant.. at one time.. I don't remember for sure which bone it was seems like an elbow.. , jump in here anytime.. and feel us in on the infection you got.. Hugs, LFT>>>>>> >>>>>> I had my monthly blood test yesterday (Friday), and got a call in >>>>>> the>>>>>> evening from my GP (PCP) - my liver function result (gamma GT) was>>>>>> through the roof! 400!! (< 50 or so is normal). I'd been moved from>>>>>> Methotrexate to Imuran when my LFT test was at 150 - so I'm rather>>>>>> shocked that it's gone up from 150 to 400 in a month on Imuran! My >>>>>> GP>>>>>> said to go off Imuran immediately, and call my Immunologist first >>>>>> thing>>>>>> Monday.>>>>>> >>>>>> So I suppose I'm going to need yet another immune suppressant to >>>>>> try,>>>>>> or just go back on a higher dose of Pred :/>>>>>> Have any others had trouble coping with the immune suppressant meds?>>>>>> I'm really not having any luck so far ... what else is there to try?>>>>>> >>>>>> One good thing - I had the best sleep in weeks after not taking >>>>>> Imuran>>>>>> ...>>>>>> >>>>>> Sigh>>>>>> >>>>>> xo >>>>>> >>>>>> >>>>>> >>>>>> >>>>>> >>>>>> ------------------------------------>>>>>> >>>>>> ~~~~ *** ~~~ *** ~~~ *** ~~~~>>>>>> The Neurosarcoidosis Community>>>>>> >>>>>> >>>>>> >>>>>> Message Archives:->>>>>> http://groups.yahoo.com/group/Neurosarcoidosis/messages>>>>>> >>>>>> Members Database:->>>>>> Listings of locations, phone numbers, and instant messengers.>>>>>> http://groups.yahoo.com/group/Neurosarcoidosis/database>>>>>> >>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2011 Report Share Posted April 12, 2011 I can't take methotrexate or immuran, a sarc specialist in maryland my pulm to try chlorloquine. I take 500 mg per day, and it's let me reduce my pred to 10 mg a day. I can't go totally off, I've taken it too many years and my adrenal gland doesn't work anymore To: Neurosarcoidosis Sent: Sat, April 9, 2011 1:23:23 AMSubject: LFT I had my monthly blood test yesterday (Friday), and got a call in the evening from my GP (PCP) - my liver function result (gamma GT) was through the roof! 400!! (< 50 or so is normal). I'd been moved from Methotrexate to Imuran when my LFT test was at 150 - so I'm rather shocked that it's gone up from 150 to 400 in a month on Imuran! My GP said to go off Imuran immediately, and call my Immunologist first thing Monday.So I suppose I'm going to need yet another immune suppressant to try, or just go back on a higher dose of Pred :/ Have any others had trouble coping with the immune suppressant meds? I'm really not having any luck so far ... what else is there to try?One good thing - I had the best sleep in weeks after not taking Imuran ...Sighxo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2011 Report Share Posted April 12, 2011 Here's hoping and praying the LFT comes back much lower Friday. take care To: Neurosarcoidosis Sent: Mon, April 11, 2011 1:52:55 AMSubject: Re: LFTYup > Is "Casualty" the same as the Emergency Room in the US?> > Ramblin' Rose> Co-owner/Moderator> > "I child-proofed my home and they STILL get in!" (Bumper sticker)> > > > > > To: Neurosarcoidosis > > > Date: Mon, 11 Apr 2011 14:06:09 +1000> > Subject: Re: LFT> > > > My immunologist thinks that it's incredibly unlikely that my liver function is getting worse from the Imuran, but he agreed with my GP's advice to come off it. The other meds I'm on shouldn't be causing any problems either. He thinks the sarcoidosis might have gone into my liver :/ And not just my gamma GT test is elevated, the other liver function tests were up too. If the Imuran was causing the problems, I should gradually start to feel better. If the sarcoid is causing the liver problems, I should gradually feel worse. Current trend over this weekend (after going off Imuran) is feeling worse. For joy.> > > > So current plan is I'll have another blood test on Friday, and have a biliary ultrasound this week. If my symptoms get worse (esp vomiting / itchiness) I'm to call my immunologist (and he can arrange for me to be admitted) or if it's after hours, just go straight to Casualty. So I don't know if I'll end up being admitted to hospital this week or not ... yaaaaaaaaaaay.> > > > xo > > > > > > > > > > > , apparently you use different lab test names, so not sure how that corresponds with ours. Whatever, that's a significant increase. Although pretty much all drugs are detoxed thru the liver, I wasn't aware of Imuran being a particular problem, whereas Mtx is known to be hard on the liver. I guess there is something about the Imuran that your system can't handle. I don't recall any members posting about liver problems with Imuran (I believe is taking it & has a long history of liver disease), although several have had to stop it due to the effect on their WBC (white blood cell) count. I think Marla has already advised milk thistle. Like all supplements, you want to get it from a trusted company or pharmacy. > > > > > > I started out on Pred, added Imuran to decrease the Pred. After 2+ years, tapered off the Pred, then a couple of months later stopped the Imuran. After a few weeks I felt the fatigue, tremors & neuropathy were getting worse, so was started on Mtx. My local doc put me on 25mg weekly, but when I saw Dr. Baughman at the University of Cincinnati, Ohio, he recommended reducing it to 15mg. He has published a lot of research on sarc & said that their studies had shown no benefit above 15mg, while the increased dosage increased liver toxicity. So my local doc agreed & reduced the dosage, which I took for 2 years. My symptoms stabilized & have been stable for the past 4-5 years.> > > > > > > > > Ramblin' Rose> > > Co-owner/Moderator> > > > > > "I child-proofed my home and they STILL get in!" (Bumper sticker)> > > > > > > > > > > > > > > > To: Neurosarcoidosis > > > > > > > Date: Sat, 9 Apr 2011 15:23:23 +1000> > > > Subject: LFT> > > > > > > > I had my monthly blood test yesterday (Friday), and got a call in the evening from my GP (PCP) - my liver function result (gamma GT) was through the roof! 400!! (< 50 or so is normal). I'd been moved from Methotrexate to Imuran when my LFT test was at 150 - so I'm rather shocked that it's gone up from 150 to 400 in a month on Imuran! My GP said to go off Imuran immediately, and call my Immunologist first thing Monday.> > > > > > > > So I suppose I'm going to need yet another immune suppressant to try, or just go back on a higher dose of Pred :/ > > > > Have any others had trouble coping with the immune suppressant meds? I'm really not having any luck so far ... what else is there to try?> > > > > > > > One good thing - I had the best sleep in weeks after not taking Imuran ...> > > > > > > > Sigh> > > > > > > > xo > > > > > > > > > > > > > > > > > > > > > > > > ------------------------------------> > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > > > The Neurosarcoidosis Community> > > > > > > > > > > > > > > > Message Archives:-> > > > http://groups.yahoo.com/group/Neurosarcoidosis/messages> > > > > > > > Members Database:-> > > > Listings of locations, phone numbers, and instant messengers.> > > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2011 Report Share Posted April 12, 2011 you don't take anything for osteoporosis do you? Fosamax drove my liver function way up (not as high as yours but 3X the norm. To: Neurosarcoidosis Sent: Mon, April 11, 2011 1:52:55 AMSubject: Re: LFTYup > Is "Casualty" the same as the Emergency Room in the US?> > Ramblin' Rose> Co-owner/Moderator> > "I child-proofed my home and they STILL get in!" (Bumper sticker)> > > > > > To: Neurosarcoidosis > > > Date: Mon, 11 Apr 2011 14:06:09 +1000> > Subject: Re: LFT> > > > My immunologist thinks that it's incredibly unlikely that my liver function is getting worse from the Imuran, but he agreed with my GP's advice to come off it. The other meds I'm on shouldn't be causing any problems either. He thinks the sarcoidosis might have gone into my liver :/ And not just my gamma GT test is elevated, the other liver function tests were up too. If the Imuran was causing the problems, I should gradually start to feel better. If the sarcoid is causing the liver problems, I should gradually feel worse. Current trend over this weekend (after going off Imuran) is feeling worse. For joy.> > > > So current plan is I'll have another blood test on Friday, and have a biliary ultrasound this week. If my symptoms get worse (esp vomiting / itchiness) I'm to call my immunologist (and he can arrange for me to be admitted) or if it's after hours, just go straight to Casualty. So I don't know if I'll end up being admitted to hospital this week or not ... yaaaaaaaaaaay.> > > > xo > > > > > > > > > > > , apparently you use different lab test names, so not sure how that corresponds with ours. Whatever, that's a significant increase. Although pretty much all drugs are detoxed thru the liver, I wasn't aware of Imuran being a particular problem, whereas Mtx is known to be hard on the liver. I guess there is something about the Imuran that your system can't handle. I don't recall any members posting about liver problems with Imuran (I believe is taking it & has a long history of liver disease), although several have had to stop it due to the effect on their WBC (white blood cell) count. I think Marla has already advised milk thistle. Like all supplements, you want to get it from a trusted company or pharmacy. > > > > > > I started out on Pred, added Imuran to decrease the Pred. After 2+ years, tapered off the Pred, then a couple of months later stopped the Imuran. After a few weeks I felt the fatigue, tremors & neuropathy were getting worse, so was started on Mtx. My local doc put me on 25mg weekly, but when I saw Dr. Baughman at the University of Cincinnati, Ohio, he recommended reducing it to 15mg. He has published a lot of research on sarc & said that their studies had shown no benefit above 15mg, while the increased dosage increased liver toxicity. So my local doc agreed & reduced the dosage, which I took for 2 years. My symptoms stabilized & have been stable for the past 4-5 years.> > > > > > > > > Ramblin' Rose> > > Co-owner/Moderator> > > > > > "I child-proofed my home and they STILL get in!" (Bumper sticker)> > > > > > > > > > > > > > > > To: Neurosarcoidosis > > > > > > > Date: Sat, 9 Apr 2011 15:23:23 +1000> > > > Subject: LFT> > > > > > > > I had my monthly blood test yesterday (Friday), and got a call in the evening from my GP (PCP) - my liver function result (gamma GT) was through the roof! 400!! (< 50 or so is normal). I'd been moved from Methotrexate to Imuran when my LFT test was at 150 - so I'm rather shocked that it's gone up from 150 to 400 in a month on Imuran! My GP said to go off Imuran immediately, and call my Immunologist first thing Monday.> > > > > > > > So I suppose I'm going to need yet another immune suppressant to try, or just go back on a higher dose of Pred :/ > > > > Have any others had trouble coping with the immune suppressant meds? I'm really not having any luck so far ... what else is there to try?> > > > > > > > One good thing - I had the best sleep in weeks after not taking Imuran ...> > > > > > > > Sigh> > > > > > > > xo > > > > > > > > > > > > > > > > > > > > > > > > ------------------------------------> > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > > > The Neurosarcoidosis Community> > > > > > > > > > > > > > > > Message Archives:-> > > > http://groups.yahoo.com/group/Neurosarcoidosis/messages> > > > > > > > Members Database:-> > > > Listings of locations, phone numbers, and instant messengers.> > > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2011 Report Share Posted April 12, 2011 I take a calcium supplement every day ... the last scan I had for bone density was all normal, but that was a few months ago now. xo > > you don't take anything for osteoporosis do you? Fosamax drove my liver function way up (not as high as yours but 3X the norm. > > > To: Neurosarcoidosis > Sent: Mon, April 11, 2011 1:52:55 AM > Subject: Re: LFT > > Yup > > > > > Is " Casualty " the same as the Emergency Room in the US? > > > > Ramblin' Rose > > Co-owner/Moderator > > > > " I child-proofed my home and they STILL get in! " (Bumper sticker) > > > > > > > > > > > To: Neurosarcoidosis > > > From: denise@... > > > Date: Mon, 11 Apr 2011 14:06:09 +1000 > > > Subject: Re: LFT > > > > > > My immunologist thinks that it's incredibly unlikely that my liver function is getting worse from the Imuran, but he agreed with my GP's advice to come off it. The other meds I'm on shouldn't be causing any problems either. He thinks the sarcoidosis might have gone into my liver :/ And not just my gamma GT test is elevated, the other liver function tests were up too. If the Imuran was causing the problems, I should gradually start to feel better. If the sarcoid is causing the liver problems, I should gradually feel worse. Current trend over this weekend (after going off Imuran) is feeling worse. For joy. > > > > > > So current plan is I'll have another blood test on Friday, and have a biliary ultrasound this week. If my symptoms get worse (esp vomiting / itchiness) I'm to call my immunologist (and he can arrange for me to be admitted) or if it's after hours, just go straight to Casualty. So I don't know if I'll end up being admitted to hospital this week or not ... yaaaaaaaaaaay. > > > > > > xo > > > > > > > > > > > > > > > > , apparently you use different lab test names, so not sure how that corresponds with ours. Whatever, that's a significant increase. Although pretty much all drugs are detoxed thru the liver, I wasn't aware of Imuran being a particular problem, whereas Mtx is known to be hard on the liver. I guess there is something about the Imuran that your system can't handle. I don't recall any members posting about liver problems with Imuran (I believe is taking it & has a long history of liver disease), although several have had to stop it due to the effect on their WBC (white blood cell) count. I think Marla has already advised milk thistle. Like all supplements, you want to get it from a trusted company or pharmacy. > > > > > > > > I started out on Pred, added Imuran to decrease the Pred. After 2+ years, tapered off the Pred, then a couple of months later stopped the Imuran. After a few weeks I felt the fatigue, tremors & neuropathy were getting worse, so was started on Mtx. My local doc put me on 25mg weekly, but when I saw Dr. Baughman at the University of Cincinnati, Ohio, he recommended reducing it to 15mg. He has published a lot of research on sarc & said that their studies had shown no benefit above 15mg, while the increased dosage increased liver toxicity. So my local doc agreed & reduced the dosage, which I took for 2 years. My symptoms stabilized & have been stable for the past 4-5 years. > > > > > > > > > > > > Ramblin' Rose > > > > Co-owner/Moderator > > > > > > > > " I child-proofed my home and they STILL get in! " (Bumper sticker) > > > > > > > > > > > > > > > > > > > > > To: Neurosarcoidosis > > > > > From: denise@... > > > > > Date: Sat, 9 Apr 2011 15:23:23 +1000 > > > > > Subject: LFT > > > > > > > > > > I had my monthly blood test yesterday (Friday), and got a call in the evening from my GP (PCP) - my liver function result (gamma GT) was through the roof! 400!! (< 50 or so is normal). I'd been moved from Methotrexate to Imuran when my LFT test was at 150 - so I'm rather shocked that it's gone up from 150 to 400 in a month on Imuran! My GP said to go off Imuran immediately, and call my Immunologist first thing Monday. > > > > > > > > > > So I suppose I'm going to need yet another immune suppressant to try, or just go back on a higher dose of Pred :/ > > > > > Have any others had trouble coping with the immune suppressant meds? I'm really not having any luck so far ... what else is there to try? > > > > > > > > > > One good thing - I had the best sleep in weeks after not taking Imuran .... > > > > > > > > > > Sigh > > > > > > > > > > xo > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ------------------------------------ > > > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > > > The Neurosarcoidosis Community > > > > > > > > > > > > > > > > > > > > Message Archives:- > > > > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > > > > > > > Members Database:- > > > > > Listings of locations, phone numbers, and instant messengers. > > > > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2011 Report Share Posted April 12, 2011  LFT>>>>>> >>>>>> I had my monthly blood test yesterday (Friday), and got a call in >>>>>> the>>>>>> evening from my GP (PCP) - my liver function result (gamma GT) was>>>>>> through the roof! 400!! (< 50 or so is normal). I'd been moved from>>>>>> Methotrexate to Imuran when my LFT test was at 150 - so I'm rather>>>>>> shocked that it's gone up from 150 to 400 in a month on Imuran! My >>>>>> GP>>>>>> said to go off Imuran immediately, and call my Immunologist first >>>>>> thing>>>>>> Monday.>>>>>> >>>>>> So I suppose I'm going to need yet another immune suppressant to >>>>>> try,>>>>>> or just go back on a higher dose of Pred :/>>>>>> Have any others had trouble coping with the immune suppressant meds?>>>>>> I'm really not having any luck so far ... what else is there to try?>>>>>> >>>>>> One good thing - I had the best sleep in weeks after not taking >>>>>> Imuran>>>>>> ...>>>>>> >>>>>> Sigh>>>>>> >>>>>> xo >>>>>> >>>>>> >>>>>> >>>>>> >>>>>> >>>>>> ------------------------------------>>>>>> >>>>>> ~~~~ *** ~~~ *** ~~~ *** ~~~~>>>>>> The Neurosarcoidosis Community>>>>>> >>>>>> >>>>>> >>>>>> Message Archives:->>>>>> http://groups.yahoo.com/group/Neurosarcoidosis/messages>>>>>> >>>>>> Members Database:->>>>>> Listings of locations, phone numbers, and instant messengers.>>>>>> http://groups.yahoo.com/group/Neurosarcoidosis/database>>>>>> >>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2011 Report Share Posted April 12, 2011  , thanks for jumping in there.. Listen, I'm having to drink 60cc's of Lactulose a day.. Gosh, they sent me home with 12 bottles of that nasty stuff.. YUCK!! but I am getting better about it.. My Ammonia is doing better and my Carbon Dixiode is better.. Thanks, LFT>>>>>> >>>>>> I had my monthly blood test yesterday (Friday), and got a call in >>>>>> the>>>>>> evening from my GP (PCP) - my liver function result (gamma GT) was>>>>>> through the roof! 400!! (< 50 or so is normal). I'd been moved from>>>>>> Methotrexate to Imuran when my LFT test was at 150 - so I'm rather>>>>>> shocked that it's gone up from 150 to 400 in a month on Imuran! My >>>>>> GP>>>>>> said to go off Imuran immediately, and call my Immunologist first >>>>>> thing>>>>>> Monday.>>>>>> >>>>>> So I suppose I'm going to need yet another immune suppressant to >>>>>> try,>>>>>> or just go back on a higher dose of Pred :/>>>>>> Have any others had trouble coping with the immune suppressant meds?>>>>>> I'm really not having any luck so far ... what else is there to try?>>>>>> >>>>>> One good thing - I had the best sleep in weeks after not taking >>>>>> Imuran>>>>>> ...>>>>>> >>>>>> Sigh>>>>>> >>>>>> xo >>>>>> >>>>>> >>>>>> >>>>>> >>>>>> >>>>>> ------------------------------------>>>>>> >>>>>> ~~~~ *** ~~~ *** ~~~ *** ~~~~>>>>>> The Neurosarcoidosis Community>>>>>> >>>>>> >>>>>> >>>>>> Message Archives:->>>>>> http://groups.yahoo.com/group/Neurosarcoidosis/messages>>>>>> >>>>>> Members Database:->>>>>> Listings of locations, phone numbers, and instant messengers.>>>>>> http://groups.yahoo.com/group/Neurosarcoidosis/database>>>>>> >>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2011 Report Share Posted April 14, 2011 Wish I could ship you all my excess bottles. I never took as much as prescribed, as only a small amount made me have accidents. I'm so glad to be out of the diapers!To: Neurosarcoidosis Sent: Tue, April 12, 2011 9:51:59 PMSubject: Re: LFT  , thanks for jumping in there.. Listen, I'm having to drink 60cc's of Lactulose a day.. Gosh, they sent me home with 12 bottles of that nasty stuff.. YUCK!! but I am getting better about it.. My Ammonia is doing better and my Carbon Dixiode is better.. Thanks, LFT>>>>>> >>>>>> I had my monthly blood test yesterday (Friday), and got a call in >>>>>> the>>>>>> evening from my GP (PCP) - my liver function result (gamma GT) was>>>>>> through the roof! 400!! (< 50 or so is normal). I'd been moved from>>>>>> Methotrexate to Imuran when my LFT test was at 150 - so I'm rather>>>>>> shocked that it's gone up from 150 to 400 in a month on Imuran! My >>>>>> GP>>>>>> said to go off Imuran immediately, and call my Immunologist first >>>>>> thing>>>>>> Monday.>>>>>> >>>>>> So I suppose I'm going to need yet another immune suppressant to >>>>>> try,>>>>>> or just go back on a higher dose of Pred :/>>>>>> Have any others had trouble coping with the immune suppressant meds?>>>>>> I'm really not having any luck so far ... what else is there to try?>>>>>> >>>>>> One good thing - I had the best sleep in weeks after not taking >>>>>> Imuran>>>>>> ...>>>>>> >>>>>> Sigh>>>>>> >>>>>> xo >>>>>> >>>>>> >>>>>> >>>>>> >>>>>> >>>>>> ------------------------------------>>>>>> >>>>>> ~~~~ *** ~~~ *** ~~~ *** ~~~~>>>>>> The Neurosarcoidosis Community>>>>>> >>>>>> >>>>>> >>>>>> Message Archives:->>>>>> http://groups.yahoo.com/group/Neurosarcoidosis/messages>>>>>> >>>>>> Members Database:->>>>>> Listings of locations, phone numbers, and instant messengers.>>>>>> http://groups.yahoo.com/group/Neurosarcoidosis/database>>>>>> >>>>>> Quote Link to comment Share on other sites More sharing options...
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