Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 Dayna, About a year ago I inquired about the " meth " trials that new england medical center is doing for PSC. I decided not to go on it... because you cannot become pregnant at any time during the study (and I believe they said phase one of the study lasts 4 years). By then I could be married, and wanting to start a family. Maybe Gracie can send you to the website about the trials... she is the one that I got the info from. Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 Dayna, About a year ago I inquired about the " meth " trials that new england medical center is doing for PSC. I decided not to go on it... because you cannot become pregnant at any time during the study (and I believe they said phase one of the study lasts 4 years). By then I could be married, and wanting to start a family. Maybe Gracie can send you to the website about the trials... she is the one that I got the info from. Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 Hi Dayna, My husband was on Methotrexate for about 4 years. It's expirimental with PSC and hasn't been proven to help with the disease, but, some people do really well on it, some don't improve at all. Ed's Dr. has been instrumental in using Methotrexate for PSC and PBC for the last several years. It has shown to be beneficial to PBC patients. Ed got off of it about 1 1/2 years ago when we were trying to have a baby. The drug can cause serious side effects to unborn children. I don't know if it had anything to do with it, but, since then Ed has steadily gotten worse. I felt horrible about it and asked Dr. Kaplan if he should go back on it, but, he says it has nothing to do with Ed's decline in health. I think if you're beyond childbearing age you may want to give it a shot. Dr. Kaplan talks often of a man who came to him in really bad shape - was on the transplant list, and after being on Methotrexate soon got off the list and has been doing fine for about 15 years. Just my opinion Gracie and Ed dx'93 , listed '98 " dayna lineberger " wrote: original article:/group//?start=5647 > Has anyone ever been on or heard anything about Methotrexate? My Dr. has > mentioned putting me on it in the past and I just wondered what it was, what > it was supposed to do, and what the side effects were? Apparantly I am in > limbo land with my PSC. My last ERCP showed that I was worse than before, > but not bad enough for him to install stents. So in the meantime, my > itching is driving me crazy! I have scabs up and down my legs from > scratching. If anyone can give me some info on methotrexate or an antidote > for the itching problem it would be much appreciated. Thanks! > > Dayna (UC and PSC) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 Hi Dayna, My husband was on Methotrexate for about 4 years. It's expirimental with PSC and hasn't been proven to help with the disease, but, some people do really well on it, some don't improve at all. Ed's Dr. has been instrumental in using Methotrexate for PSC and PBC for the last several years. It has shown to be beneficial to PBC patients. Ed got off of it about 1 1/2 years ago when we were trying to have a baby. The drug can cause serious side effects to unborn children. I don't know if it had anything to do with it, but, since then Ed has steadily gotten worse. I felt horrible about it and asked Dr. Kaplan if he should go back on it, but, he says it has nothing to do with Ed's decline in health. I think if you're beyond childbearing age you may want to give it a shot. Dr. Kaplan talks often of a man who came to him in really bad shape - was on the transplant list, and after being on Methotrexate soon got off the list and has been doing fine for about 15 years. Just my opinion Gracie and Ed dx'93 , listed '98 " dayna lineberger " wrote: original article:/group//?start=5647 > Has anyone ever been on or heard anything about Methotrexate? My Dr. has > mentioned putting me on it in the past and I just wondered what it was, what > it was supposed to do, and what the side effects were? Apparantly I am in > limbo land with my PSC. My last ERCP showed that I was worse than before, > but not bad enough for him to install stents. So in the meantime, my > itching is driving me crazy! I have scabs up and down my legs from > scratching. If anyone can give me some info on methotrexate or an antidote > for the itching problem it would be much appreciated. Thanks! > > Dayna (UC and PSC) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 Gracie, Thanks for the info. I'm glad that I found someone that did really well on it. I have been putting my dr. off from switching me to the methatrexate, because I am afraid of the side effects. I am only 32, but do not want any more children, because we don't know how it will affect my disease. Anyway, I'll talk all of this over at my appt. on Thurs. Dayna Re: methotrexate >Hi Dayna, > >My husband was on Methotrexate for about 4 years. It's expirimental >with PSC and hasn't been proven to help with the disease, but, some >people do really well on it, some don't improve at all. Ed's Dr. has >been instrumental in using Methotrexate for PSC and PBC for the last >several years. It has shown to be beneficial to PBC patients. > >Ed got off of it about 1 1/2 years ago when we were trying to have a >baby. The drug can cause serious side effects to unborn children. > >I don't know if it had anything to do with it, but, since then Ed has >steadily gotten worse. I felt horrible about it and asked Dr. Kaplan >if he should go back on it, but, he says it has nothing to do with Ed's >decline in health. > >I think if you're beyond childbearing age you may want to give it a >shot. Dr. Kaplan talks often of a man who came to him in really bad >shape - was on the transplant list, and after being on Methotrexate >soon got off the list and has been doing fine for about 15 years. > >Just my opinion > >Gracie and Ed >dx'93 , listed '98 > > " dayna lineberger " wrote: >original article:/group//?start=5647 >> Has anyone ever been on or heard anything about Methotrexate? My Dr. >has >> mentioned putting me on it in the past and I just wondered what it >was, what >> it was supposed to do, and what the side effects were? Apparantly I >am in >> limbo land with my PSC. My last ERCP showed that I was worse than >before, >> but not bad enough for him to install stents. So in the meantime, my >> itching is driving me crazy! I have scabs up and down my legs from >> scratching. If anyone can give me some info on methotrexate or an >antidote >> for the itching problem it would be much appreciated. Thanks! >> >> Dayna (UC and PSC) >> > > >------------------------------------------------------------------------ > >eGroups.com home: /group/ > - Simplifying group communications > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 Gracie, Thanks for the info. I'm glad that I found someone that did really well on it. I have been putting my dr. off from switching me to the methatrexate, because I am afraid of the side effects. I am only 32, but do not want any more children, because we don't know how it will affect my disease. Anyway, I'll talk all of this over at my appt. on Thurs. Dayna Re: methotrexate >Hi Dayna, > >My husband was on Methotrexate for about 4 years. It's expirimental >with PSC and hasn't been proven to help with the disease, but, some >people do really well on it, some don't improve at all. Ed's Dr. has >been instrumental in using Methotrexate for PSC and PBC for the last >several years. It has shown to be beneficial to PBC patients. > >Ed got off of it about 1 1/2 years ago when we were trying to have a >baby. The drug can cause serious side effects to unborn children. > >I don't know if it had anything to do with it, but, since then Ed has >steadily gotten worse. I felt horrible about it and asked Dr. Kaplan >if he should go back on it, but, he says it has nothing to do with Ed's >decline in health. > >I think if you're beyond childbearing age you may want to give it a >shot. Dr. Kaplan talks often of a man who came to him in really bad >shape - was on the transplant list, and after being on Methotrexate >soon got off the list and has been doing fine for about 15 years. > >Just my opinion > >Gracie and Ed >dx'93 , listed '98 > > " dayna lineberger " wrote: >original article:/group//?start=5647 >> Has anyone ever been on or heard anything about Methotrexate? My Dr. >has >> mentioned putting me on it in the past and I just wondered what it >was, what >> it was supposed to do, and what the side effects were? Apparantly I >am in >> limbo land with my PSC. My last ERCP showed that I was worse than >before, >> but not bad enough for him to install stents. So in the meantime, my >> itching is driving me crazy! I have scabs up and down my legs from >> scratching. If anyone can give me some info on methotrexate or an >antidote >> for the itching problem it would be much appreciated. Thanks! >> >> Dayna (UC and PSC) >> > > >------------------------------------------------------------------------ > >eGroups.com home: /group/ > - Simplifying group communications > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 Thanks for responding . I am going to find out all the details on Thurs. Dayna Re: methotrexate >Dayna, > About a year ago I inquired about the " meth " trials that new england >medical center is doing for PSC. I decided not to go on it... because you >cannot become pregnant at any time during the study (and I believe they said >phase one of the study lasts 4 years). By then I could be married, and >wanting to start a family. Maybe Gracie can send you to the website about >the trials... she is the one that I got the info from. >Love, > > >------------------------------------------------------------------------ > >eGroups.com home: /group/ > - Simplifying group communications > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 Quantell was on methotrexate immediately after diagnosis. The drug is more commonly used as cancer chemotherapy, and can cause the usual nausea, vomiting and hair loss. (Amusingly, Q didn't have any of those side effects, but I would inevitably have nausea and often vomit within an hour or so of crushing, mixing and administering his meds.) The serious side effects (or at least the ones that mattered to us) were all related to growth and development. He was discontinued on it because there wasn't enough stabilization to justify the risk. But his (new) hepatologist has raised the idea of trying it again. Good luck Pam (mom to Quantell, 9, dx 1996) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 Quantell was on methotrexate immediately after diagnosis. The drug is more commonly used as cancer chemotherapy, and can cause the usual nausea, vomiting and hair loss. (Amusingly, Q didn't have any of those side effects, but I would inevitably have nausea and often vomit within an hour or so of crushing, mixing and administering his meds.) The serious side effects (or at least the ones that mattered to us) were all related to growth and development. He was discontinued on it because there wasn't enough stabilization to justify the risk. But his (new) hepatologist has raised the idea of trying it again. Good luck Pam (mom to Quantell, 9, dx 1996) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 Quantell was on methotrexate immediately after diagnosis. The drug is more commonly used as cancer chemotherapy, and can cause the usual nausea, vomiting and hair loss. (Amusingly, Q didn't have any of those side effects, but I would inevitably have nausea and often vomit within an hour or so of crushing, mixing and administering his meds.) The serious side effects (or at least the ones that mattered to us) were all related to growth and development. He was discontinued on it because there wasn't enough stabilization to justify the risk. But his (new) hepatologist has raised the idea of trying it again. Good luck Pam (mom to Quantell, 9, dx 1996) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 1999 Report Share Posted October 19, 1999 I went on methotrexate for about 6 months last year. Initially I felt better but as the dosed steadily increased i felt nauseous and became more pone to infections, including one flu like episode that landed me my only stay in the hosp. After that i went off the drug and have been infection free for a year. (knock on wood) Michele, status 3, NJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2011 Report Share Posted December 19, 2011 Hi, Could someone remind me which herbs should be avoided in a rheumatoid arthritis patient taking methotrexate (wanting to come off it). I am not sure exactly how this drug is working on the body. Thanks Jean Quote Link to comment Share on other sites More sharing options...
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