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Hi Amber and Carol'

I have been on Cytoxan since April. My doctor figured my dose based upon my

" normal " weight.(Pre-medrol) I started with 50mg. and worked up to 175mg. As

my Cytoxan increases, I am trying to decrease my medrol. The Cytoxan takes

about three weeks to build a level. You may be surprised to hear that I have

tracheal and bronchi involvement, so I was put on Cytoxan hoping that I would

be able to breathe better. So far, so good. Drink lots of water and it should

keep you from having bladder problems. I know a doctor who has had patients

on Cytoxan for 6-7 years

and they're doing great. Just drink and drink some more.

Kathy

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Hi Amber and Carol'

I have been on Cytoxan since April. My doctor figured my dose based upon my

" normal " weight.(Pre-medrol) I started with 50mg. and worked up to 175mg. As

my Cytoxan increases, I am trying to decrease my medrol. The Cytoxan takes

about three weeks to build a level. You may be surprised to hear that I have

tracheal and bronchi involvement, so I was put on Cytoxan hoping that I would

be able to breathe better. So far, so good. Drink lots of water and it should

keep you from having bladder problems. I know a doctor who has had patients

on Cytoxan for 6-7 years

and they're doing great. Just drink and drink some more.

Kathy

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amber and carol

am i understanding you that your mom is on 160 mg of

pred. wow that is a lot. never heard of anyone

being on that much before, how about it group, has

any one out there been on that much pred before.

dawn

--- arnoldamber@... wrote:

> I just want to say that my mom and are so greatful

> to have found this

> group. You all have been so helpful, and I hope to

> be helpful to you

> all as well.

>

> There have been a few people who emailed myself and

> my mom, Carol,

> regarding the Cytoxan.

>

> My mom recently went to her rheumy. and told him how

> out of breath

> she was. She wanted to know if she should be taking

> the cytoxan

> anymore. He said yes and upped her to 160mgs. of

> prednisone and kept

> her cytoxan at 150 mg. That seems like a lot. On

> top of the

> breathlessness, she is experiencing quite a bit of

> swelling in her

> lower legs. She was checked for blood clots, she is

> o.k. there.

> But, should her doctor keep her on this medicine

> with these side

> effects?

>

> My mom would like to know how much cytoxan most

> individuals take,

> what your side effects have been and also what

> medicines you may have

> used before cytoxan? Thank you.

>

> I know we are new and I am not sure if this has been

> discussed, but

> my mom just tried the C-Pap machine last night while

> she slept. I

> have yet to speak with her about how it worked last

> night, but I

> thought I would throw it out there in case it was

> useful to any of

> you and perhaps you have already discussed and used

> this.

>

> Thank you,

>

> Amber & Carol

>

>

__________________________________________________

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amber and carol

am i understanding you that your mom is on 160 mg of

pred. wow that is a lot. never heard of anyone

being on that much before, how about it group, has

any one out there been on that much pred before.

dawn

--- arnoldamber@... wrote:

> I just want to say that my mom and are so greatful

> to have found this

> group. You all have been so helpful, and I hope to

> be helpful to you

> all as well.

>

> There have been a few people who emailed myself and

> my mom, Carol,

> regarding the Cytoxan.

>

> My mom recently went to her rheumy. and told him how

> out of breath

> she was. She wanted to know if she should be taking

> the cytoxan

> anymore. He said yes and upped her to 160mgs. of

> prednisone and kept

> her cytoxan at 150 mg. That seems like a lot. On

> top of the

> breathlessness, she is experiencing quite a bit of

> swelling in her

> lower legs. She was checked for blood clots, she is

> o.k. there.

> But, should her doctor keep her on this medicine

> with these side

> effects?

>

> My mom would like to know how much cytoxan most

> individuals take,

> what your side effects have been and also what

> medicines you may have

> used before cytoxan? Thank you.

>

> I know we are new and I am not sure if this has been

> discussed, but

> my mom just tried the C-Pap machine last night while

> she slept. I

> have yet to speak with her about how it worked last

> night, but I

> thought I would throw it out there in case it was

> useful to any of

> you and perhaps you have already discussed and used

> this.

>

> Thank you,

>

> Amber & Carol

>

>

__________________________________________________

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Dawn,

Sure seems like a very high dose to me..

I don't know of anyone who has been on that much Pred.

Sandy

amber and carolam i understanding you that your mom is on 160 mg ofpred. wow that is a lot. never heard of anyonebeing on that much before, how about it group, hasany one out there been on that much pred before.dawn--- arnoldamber@... wrote:> I just want to say that my mom and are so greatful> to have found this > group. You all have been so helpful, and I hope to> be helpful to you > all as well.> > There have been a few people who emailed myself and> my mom, Carol, > regarding the Cytoxan. > > My mom recently went to her rheumy. and told him how> out of breath > she was. She wanted to know if she should be taking> the cytoxan > anymore. He said yes and upped her to 160mgs. of> prednisone and kept > her cytoxan at 150 mg. That seems like a lot. On> top of the > breathlessness, she is experiencing quite a bit of> swelling in her > lower legs. She was checked for blood clots, she is> o.k. there. > But, should her doctor keep her on this medicine> with these side > effects? > > My mom would like to know how much cytoxan most> individuals take, > what your side effects have been and also what> medicines you may have > used before cytoxan? Thank you.> > I know we are new and I am not sure if this has been> discussed, but > my mom just tried the C-Pap machine last night while> she slept. I > have yet to speak with her about how it worked last> night, but I > thought I would throw it out there in case it was> useful to any of > you and perhaps you have already discussed and used> this. > > Thank you,> > Amber & Carol> > __________________________________________________

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Dawn,

Sure seems like a very high dose to me..

I don't know of anyone who has been on that much Pred.

Sandy

amber and carolam i understanding you that your mom is on 160 mg ofpred. wow that is a lot. never heard of anyonebeing on that much before, how about it group, hasany one out there been on that much pred before.dawn--- arnoldamber@... wrote:> I just want to say that my mom and are so greatful> to have found this > group. You all have been so helpful, and I hope to> be helpful to you > all as well.> > There have been a few people who emailed myself and> my mom, Carol, > regarding the Cytoxan. > > My mom recently went to her rheumy. and told him how> out of breath > she was. She wanted to know if she should be taking> the cytoxan > anymore. He said yes and upped her to 160mgs. of> prednisone and kept > her cytoxan at 150 mg. That seems like a lot. On> top of the > breathlessness, she is experiencing quite a bit of> swelling in her > lower legs. She was checked for blood clots, she is> o.k. there. > But, should her doctor keep her on this medicine> with these side > effects? > > My mom would like to know how much cytoxan most> individuals take, > what your side effects have been and also what> medicines you may have > used before cytoxan? Thank you.> > I know we are new and I am not sure if this has been> discussed, but > my mom just tried the C-Pap machine last night while> she slept. I > have yet to speak with her about how it worked last> night, but I > thought I would throw it out there in case it was> useful to any of > you and perhaps you have already discussed and used> this. > > Thank you,> > Amber & Carol> > __________________________________________________

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