Guest guest Posted October 24, 2009 Report Share Posted October 24, 2009 I am on 1500mg of Cellcept twice a day. I was tapered down to 1000mg, but the cough got worse, so doc put me back up to 1500 bid.psychnursekathy ILD 03/07 IPF10/09 From: smoo <mikefergg (AT) yahoo (DOT) com>Subject: Cytoxin Anyone?To: Breathe-Support@ yahoogroups. comDate: Saturday, October 24, 2009, 3:09 PM Does anyone take Cytoxin? I've been on it for about a year and a half. My hair is minimal now; and it seems to have stopped helping like it did the first few months. I'm on 50mg now and Dr. Hines at Jewish said maybe I could use a bigger dose. Yikes!!! I also take a lot of prednisone and may be put on a maintenance dose. From what I can find online, the side effects of Cellcept are not as severe and a lot of you seem to be on that particular drug. Any input out there? I have not had my final call from Dr. Hines after she does the complete workup but would like some information on this. It never hurts to know more about it when talking with the doctor.ann PF, HP etc.. since 1997 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2009 Report Share Posted October 24, 2009 i am on 1000 mgs cellcept twice a day -- that's 2000 mgs per day Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Cytoxin Anyone?To: Breathe-Support Date: Saturday, October 24, 2009, 9:27 PM I am on 1500mg of Cellcept twice a day. I was tapered down to 1000mg, but the cough got worse, so doc put me back up to 1500 bid.psychnursekathy ILD 03/07 IPF10/09 From: smoo <mikefergg (AT) yahoo (DOT) com>Subject: Cytoxin Anyone?To: Breathe-Support@ yahoogroups. comDate: Saturday, October 24, 2009, 3:09 PM Does anyone take Cytoxin? I've been on it for about a year and a half. My hair is minimal now; and it seems to have stopped helping like it did the first few months. I'm on 50mg now and Dr. Hines at Jewish said maybe I could use a bigger dose. Yikes!!! I also take a lot of prednisone and may be put on a maintenance dose. From what I can find online, the side effects of Cellcept are not as severe and a lot of you seem to be on that particular drug. Any input out there? I have not had my final call from Dr. Hines after she does the complete workup but would like some information on this. It never hurts to know more about it when talking with the doctor.ann PF, HP etc.. since 1997 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2009 Report Share Posted October 24, 2009 Hi Joyce, Thanks for the feedback. I am on Septra 3 days a week and it really keeps URIs to a minimum. I know that cellcept has a lot of side effects. Reading up on them, they seem not to be as serious in general and maybe none if one is lucky. I have tolerated cytoxin well but for losing my hair; but if they increase the dose it greatly increases the odds of bone marrow depression etc. It can also cause lung scaring. I didn't see that mentioned with cellcept. My pulmo did not increase it for that reason. I guess it will be trial and error. I will hope to get even more input from the group. ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2009 Report Share Posted October 24, 2009 I was on Cytoxan for about a year and a half, I did not have serious side effects. My hair is more curly now! I didn't loose too much hair but still falling off, it's been a year since my last dose. I am on Cellcept too. I am taking 2000 mg daily. My doctor ordered blood work monthly to monitor side effects in my organs. I did notice my skin is getting really dry and my face is peeling off, I try to stay away from the sun as much as I can. I live indoors! Lately I have noticed memory problems, I dont know if that is from the Cellcept. Subject: Cytoxin Anyone?To: Breathe-Support Date: Saturday, October 24, 2009, 2:09 PM Does anyone take Cytoxin? I've been on it for about a year and a half. My hair is minimal now; and it seems to have stopped helping like it did the first few months. I'm on 50mg now and Dr. Hines at Jewish said maybe I could use a bigger dose. Yikes!!! I also take a lot of prednisone and may be put on a maintenance dose. From what I can find online, the side effects of Cellcept are not as severe and a lot of you seem to be on that particular drug. Any input out there? I have not had my final call from Dr. Hines after she does the complete workup but would like some information on this. It never hurts to know more about it when talking with the doctor.ann PF, HP etc.. since 1997 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2009 Report Share Posted October 26, 2009 I was on cytoxin for 30 months, My MCTD caused pulmonary fibrosis which was progressing very quickly. The cytoxin (150 mg) caused my immune sysem to shut down and my blood count to drop. Had to keep away from anyone sick, small children and remain in a sterile environment at home. Very few quest were allowed to visit. I became anemic and lowered the dosage to 100 mg after 15 months. Everything turned out well, the P.F. stopped progressing and I am stable. Was alson on 40mg pred. 100mg plaguenil, nexium, advair, reglan. It all helped. Dan in VA From: smoo <mikefergg (AT) yahoo (DOT) com>Subject: Cytoxin Anyone?To: Breathe-Support@ yahoogroups. comDate: Saturday, October 24, 2009, 3:09 PM Does anyone take Cytoxin? I've been on it for about a year and a half. My hair is minimal now; and it seems to have stopped helping like it did the first few months. I'm on 50mg now and Dr. Hines at Jewish said maybe I could use a bigger dose. Yikes!!! I also take a lot of prednisone and may be put on a maintenance dose. From what I can find online, the side effects of Cellcept are not as severe and a lot of you seem to be on that particular drug. Any input out there? I have not had my final call from Dr. Hines after she does the complete workup but would like some information on this. It never hurts to know more about it when talking with the doctor.ann PF, HP etc.. since 1997 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2009 Report Share Posted October 26, 2009 Thanks Dan, That was quite a round of cytoxin. There is no need for anything that drastic for me at this point. I'm only on 50mg with no side effects other than hair loss. I also take Septra. It does make me think I might tolerate 75mg or even 100mg but no more. Besides, at age 68, that would be a huge chunk out of my life right now. LOL One must consider quality as well as quantity. ann > > > From: smoo <mikefergg (AT) yahoo (DOT) com> > Subject: Cytoxin Anyone? > To: Breathe-Support@ yahoogroups. com > Date: Saturday, October 24, 2009, 3:09 PM > > > > > Does anyone take Cytoxin? I've been on it for about a year and a half. My hair is minimal now; and it seems to have stopped helping like it did the first few months. I'm on 50mg now and Dr. Hines at Jewish said maybe I could use a bigger dose. Yikes!!! I also take a lot of prednisone and may be put on a maintenance dose. > > From what I can find online, the side effects of Cellcept are not as severe and a lot of you seem to be on that particular drug. Any input out there? I have not had my final call from Dr. Hines after she does the complete workup but would like some information on this. It never hurts to know more about it when talking with the doctor. > > ann PF, HP etc.. since 1997 > Quote Link to comment Share on other sites More sharing options...
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