Re: Re: transtracheal oxygen/Cyclophosphamide or Cytoxan

[Guest guest]

i was on Imuran when first diagnosed, but when the dose was increased significantly, i had a reaction to it, so i am not on it now

jerry is taking it for a different disease and doing very well with it -- he was able to go off of prednisone for the first time in umpteen years

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: transtracheal oxygen/Cyclophosphamide or CytoxanTo: Breathe-Support Date: Friday, May 15, 2009, 8:34 PM

Sue,

I see Dr on also. I really think quite highly of him. I'm not on Cytoxan though it was something that has been discussed but discarded in my case at least for now.

I've been on Imuran for a few months to control the symptoms of my dermatomyositis. So far it seems to be working fairly well and no noticable side effects. But the Imuran was prescribed by my rheumatologist not by Dr. on.

What I've heard about Cytoxan is fairly negative. It can be effective but the side effects are fairly horrific and I was happy when that idea was dropped. I'll go down that road when/if I must but I'm content not to be there yet.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Sue Dassel <sdassel (AT) verizon (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Friday, May 15, 2009 10:40:40 AMSubject: Re: transtracheal oxygen/Cyclophospha mide or Cytoxan

Thanks to Bruce and Beth for some info on TTO. I am interested in pursuing it with my doc.

MB, I am seeing Dr. on at Duke.

On another matter, he is considering putting me on the drug Cytoxan for 4 to 6 months because the cellcept (I’m on max dose of 3000 mg per day) doesn’t seem to be helping me anymore. It’s a drug given for cancer immunotherapy. I think he wants me to get off Prednisone. Anyone taking that drug? What side effects have you had? Has it helped you?

Thanks.

Sue D.

63 yr old, Fibrotic NSIP dx 9/07, VA

[Guest guest]

the amazing thing is that since the prednisone induced the diabetes and i started counting carbs for the diabetes, i started losing the weight that i put on because of the prednisone

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: transtracheal oxygen/Cyclophosphamide or CytoxanTo: Breathe-Support Date: Saturday, May 16, 2009, 6:28 PM

I am taking Prednisone. I have gained 32 lbs in just a few months. I had a blood test yesterday to see if it I need my thyroid meds changed. I hope that she tested for diabetes too. I am one of the people that Prednisone helps so my doctor sort of said take it or die. e also told me that the side affects can be treated. If he had to put me on Imuran those side affects can't. So I get I'll be fat and live awhile longer. Beverley Joy, 70, IPF, 1-09 Idaho

Re: transtracheal oxygen/Cyclophospha mide or Cytoxan

Thanks to Bruce and Beth for some info on TTO. I am interested in pursuing it with my doc.

MB, I am seeing Dr. on at Duke.

On another matter, he is considering putting me on the drug Cytoxan for 4 to 6 months because the cellcept (I’m on max dose of 3000 mg per day) doesn’t seem to be helping me anymore. It’s a drug given for cancer immunotherapy. I think he wants me to get off Prednisone. Anyone taking that drug? What side effects have you had? Has it helped you?

Thanks.

Sue D.

63 yr old, Fibrotic NSIP dx 9/07, VA

[Guest guest]

the amazing thing is that since the prednisone induced the diabetes and i started counting carbs for the diabetes, i started losing the weight that i put on because of the prednisone

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: transtracheal oxygen/Cyclophosphamide or CytoxanTo: Breathe-Support Date: Saturday, May 16, 2009, 6:28 PM

I am taking Prednisone. I have gained 32 lbs in just a few months. I had a blood test yesterday to see if it I need my thyroid meds changed. I hope that she tested for diabetes too. I am one of the people that Prednisone helps so my doctor sort of said take it or die. e also told me that the side affects can be treated. If he had to put me on Imuran those side affects can't. So I get I'll be fat and live awhile longer. Beverley Joy, 70, IPF, 1-09 Idaho

Re: transtracheal oxygen/Cyclophospha mide or Cytoxan

Thanks to Bruce and Beth for some info on TTO. I am interested in pursuing it with my doc.

MB, I am seeing Dr. on at Duke.

On another matter, he is considering putting me on the drug Cytoxan for 4 to 6 months because the cellcept (I’m on max dose of 3000 mg per day) doesn’t seem to be helping me anymore. It’s a drug given for cancer immunotherapy. I think he wants me to get off Prednisone. Anyone taking that drug? What side effects have you had? Has it helped you?

Thanks.

Sue D.

63 yr old, Fibrotic NSIP dx 9/07, VA