Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 Elodia TWO YEARS!!!!! OMG I was under the impression I would do this for a year & that was all! I am so tired from the treatment & thought I was almost finished. I also hate the eating binges afterwards. Geez I'm going to have to find out if they plan on more than the year. Thanks for the info. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 Elodia TWO YEARS!!!!! OMG I was under the impression I would do this for a year & that was all! I am so tired from the treatment & thought I was almost finished. I also hate the eating binges afterwards. Geez I'm going to have to find out if they plan on more than the year. Thanks for the info. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 Hi Elodia, Nice to see you posting....how are you doing?? Hugs, Darlene NS Co-Owner/Moderator > > > > > Hey Rosie Posie just a little input on the cytoxan thing. Dr. Baughman > had me on it for 2 years until I started getting toxic from it. It's > kinda rough for a day or two after the treatment, mine were every 2 > weeks, can't remember the dose but I know it increased twice. > I will say that my brain stuff definately was better on it, other > stuff not so good. All the medications worked good on me for some > things and not so good for others. The thing that worked the best was > the Remicade, but then it almost killed me. Well come to think of it, > prednisone-cataracts and diabetes, methotrxate-liver problems,Imuran- > can't remember but it did something wonky, cytoxan-toxicity, remicade- > either sepsis or a allergic reaction (either way ain't nobody going to > give me any more of it). > You must be seeing Dr. B. now, he seems to be the cytoxan man. If > there are any questions that I can answer for you just ask. Who knows I > just might remember the answer. > Elodia > > > > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > NS CHAT:- Has been cancelled for now. > > 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 January 16, 2006 Report Share Posted January 16, 2006 Hi Elodia, Nice to see you posting....how are you doing?? Hugs, Darlene NS Co-Owner/Moderator > > > > > Hey Rosie Posie just a little input on the cytoxan thing. Dr. Baughman > had me on it for 2 years until I started getting toxic from it. It's > kinda rough for a day or two after the treatment, mine were every 2 > weeks, can't remember the dose but I know it increased twice. > I will say that my brain stuff definately was better on it, other > stuff not so good. All the medications worked good on me for some > things and not so good for others. The thing that worked the best was > the Remicade, but then it almost killed me. Well come to think of it, > prednisone-cataracts and diabetes, methotrxate-liver problems,Imuran- > can't remember but it did something wonky, cytoxan-toxicity, remicade- > either sepsis or a allergic reaction (either way ain't nobody going to > give me any more of it). > You must be seeing Dr. B. now, he seems to be the cytoxan man. If > there are any questions that I can answer for you just ask. Who knows I > just might remember the answer. > Elodia > > > > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > NS CHAT:- Has been cancelled for now. > > 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 January 16, 2006 Report Share Posted January 16, 2006 Ciao, read your response, thanks a bunch. However, what concerns me is what other tests besides the CBC did doctor use to measure whether your system was improving with cytoxan? Marge. runtel2000 wrote: Hey Rosie Posie just a little input on the cytoxan thing. Dr. Baughman had me on it for 2 years until I started getting toxic from it. It's kinda rough for a day or two after the treatment, mine were every 2 weeks, can't remember the dose but I know it increased twice.I will say that my brain stuff definately was better on it, other stuff not so good. All the medications worked good on me for some things and not so good for others. The thing that worked the best was the Remicade, but then it almost killed me. Well come to think of it, prednisone-cataracts and diabetes, methotrxate-liver problems,Imuran-can't remember but it did something wonky, cytoxan-toxicity, remicade-either sepsis or a allergic reaction (either way ain't nobody going to give me any more of it).You must be seeing Dr. B. now, he seems to be the cytoxan man. If there are any questions that I can answer for you just ask. Who knows I just might remember the answer. Elodia Yahoo! Photos Ring in the New Year with Photo Calendars. Add photos, events, holidays, whatever. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 Ciao, read your response, thanks a bunch. However, what concerns me is what other tests besides the CBC did doctor use to measure whether your system was improving with cytoxan? Marge. runtel2000 wrote: Hey Rosie Posie just a little input on the cytoxan thing. Dr. Baughman had me on it for 2 years until I started getting toxic from it. It's kinda rough for a day or two after the treatment, mine were every 2 weeks, can't remember the dose but I know it increased twice.I will say that my brain stuff definately was better on it, other stuff not so good. All the medications worked good on me for some things and not so good for others. The thing that worked the best was the Remicade, but then it almost killed me. Well come to think of it, prednisone-cataracts and diabetes, methotrxate-liver problems,Imuran-can't remember but it did something wonky, cytoxan-toxicity, remicade-either sepsis or a allergic reaction (either way ain't nobody going to give me any more of it).You must be seeing Dr. B. now, he seems to be the cytoxan man. If there are any questions that I can answer for you just ask. Who knows I just might remember the answer. Elodia Yahoo! Photos Ring in the New Year with Photo Calendars. Add photos, events, holidays, whatever. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 Ciao, read your response, thanks a bunch. However, what concerns me is what other tests besides the CBC did doctor use to measure whether your system was improving with cytoxan? Marge. runtel2000 wrote: Hey Rosie Posie just a little input on the cytoxan thing. Dr. Baughman had me on it for 2 years until I started getting toxic from it. It's kinda rough for a day or two after the treatment, mine were every 2 weeks, can't remember the dose but I know it increased twice.I will say that my brain stuff definately was better on it, other stuff not so good. All the medications worked good on me for some things and not so good for others. The thing that worked the best was the Remicade, but then it almost killed me. Well come to think of it, prednisone-cataracts and diabetes, methotrxate-liver problems,Imuran-can't remember but it did something wonky, cytoxan-toxicity, remicade-either sepsis or a allergic reaction (either way ain't nobody going to give me any more of it).You must be seeing Dr. B. now, he seems to be the cytoxan man. If there are any questions that I can answer for you just ask. Who knows I just might remember the answer. Elodia Yahoo! Photos Ring in the New Year with Photo Calendars. Add photos, events, holidays, whatever. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2006 Report Share Posted January 17, 2006 Thanks, Elodia. That is helpful. Boy, we are damned if we do & damned if we don't, aren't we? Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: cytoxanDate: Mon, 16 Jan 2006 11:28:56 -0800 (PST) Ciao, read your response, thanks a bunch. However, what concerns me is what other tests besides the CBC did doctor use to measure whether your system was improving with cytoxan? Marge. runtel2000 wrote: Hey Rosie Posie just a little input on the cytoxan thing. Dr. Baughman had me on it for 2 years until I started getting toxic from it. It's kinda rough for a day or two after the treatment, mine were every 2 weeks, can't remember the dose but I know it increased twice.I will say that my brain stuff definately was better on it, other stuff not so good. All the medications worked good on me for some things and not so good for others. The thing that worked the best was the Remicade, but then it almost killed me. Well come to think of it, prednisone-cataracts and diabetes, methotrxate-liver problems,Imuran-can't remember but it did something wonky, cytoxan-toxicity, remicade-either sepsis or a allergic reaction (either way ain't nobody going to give me any more of it).You must be seeing Dr. B. now, he seems to be the cytoxan man. If there are any questions that I can answer for you just ask. Who knows I just might remember the answer. Elodia Yahoo! PhotosRing in the New Year with Photo Calendars. Add photos, events, holidays, whatever. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers 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 January 17, 2006 Report Share Posted January 17, 2006 Thanks, Elodia. That is helpful. Boy, we are damned if we do & damned if we don't, aren't we? Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: cytoxanDate: Mon, 16 Jan 2006 11:28:56 -0800 (PST) Ciao, read your response, thanks a bunch. However, what concerns me is what other tests besides the CBC did doctor use to measure whether your system was improving with cytoxan? Marge. runtel2000 wrote: Hey Rosie Posie just a little input on the cytoxan thing. Dr. Baughman had me on it for 2 years until I started getting toxic from it. It's kinda rough for a day or two after the treatment, mine were every 2 weeks, can't remember the dose but I know it increased twice.I will say that my brain stuff definately was better on it, other stuff not so good. All the medications worked good on me for some things and not so good for others. The thing that worked the best was the Remicade, but then it almost killed me. Well come to think of it, prednisone-cataracts and diabetes, methotrxate-liver problems,Imuran-can't remember but it did something wonky, cytoxan-toxicity, remicade-either sepsis or a allergic reaction (either way ain't nobody going to give me any more of it).You must be seeing Dr. B. now, he seems to be the cytoxan man. If there are any questions that I can answer for you just ask. Who knows I just might remember the answer. Elodia Yahoo! PhotosRing in the New Year with Photo Calendars. Add photos, events, holidays, whatever. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers 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 January 17, 2006 Report Share Posted January 17, 2006 Thanks, Elodia. That is helpful. Boy, we are damned if we do & damned if we don't, aren't we? Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: cytoxanDate: Mon, 16 Jan 2006 11:28:56 -0800 (PST) Ciao, read your response, thanks a bunch. However, what concerns me is what other tests besides the CBC did doctor use to measure whether your system was improving with cytoxan? Marge. runtel2000 wrote: Hey Rosie Posie just a little input on the cytoxan thing. Dr. Baughman had me on it for 2 years until I started getting toxic from it. It's kinda rough for a day or two after the treatment, mine were every 2 weeks, can't remember the dose but I know it increased twice.I will say that my brain stuff definately was better on it, other stuff not so good. All the medications worked good on me for some things and not so good for others. The thing that worked the best was the Remicade, but then it almost killed me. Well come to think of it, prednisone-cataracts and diabetes, methotrxate-liver problems,Imuran-can't remember but it did something wonky, cytoxan-toxicity, remicade-either sepsis or a allergic reaction (either way ain't nobody going to give me any more of it).You must be seeing Dr. B. now, he seems to be the cytoxan man. If there are any questions that I can answer for you just ask. Who knows I just might remember the answer. Elodia Yahoo! PhotosRing in the New Year with Photo Calendars. Add photos, events, holidays, whatever. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers 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 January 17, 2006 Report Share Posted January 17, 2006 How do they check for the liver toxicity? They take blood before every treatment but I've never heard what besides my white cell count & my sugar they are looking at. I should ask more questions but I usually end up asleep or half way in the waiting room. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2006 Report Share Posted January 18, 2006 , there is a Liver Panel that includes several tests, or some docs just do an AST. I forget what that measures, but it is supposed to indicate liver health. Baughman says that livel function tests are not reliable in detecting damage due to Methotrexate. He has found that the results of liver biopsies do not always agree with the blood tests, so that the blood tests could give false reassurance. Now, I don't know if this is true of all types of liver damage, or just that resulting from MTX. He recommends the liver biopsy when the patient has taken a total of 2 grams (2000 mg) of Mtx. I'm at about 800mg now, so I don't have to worry for awhile. Anyway, regarding the liver tests, I'll try to get that info for you in the next couple of days. It's amazing how much medical info I've forgotten in the two years since I worked, after over 30 years as a nurse. Oh well. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: cytoxanDate: Tue, 17 Jan 2006 22:17:31 -0800 (PST)How do they check for the liver toxicity? They takeblood before every treatment but I've never heard whatbesides my white cell count & my sugar they arelooking at. I should ask more questions but I usuallyend up asleep or half way in the waiting room.grannylunatic@...__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2006 Report Share Posted January 18, 2006 Thanks Rose. I appreciate all your effort & the info. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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