Joyce/Cytoxan

[Guest guest]

Joyce, I'm so sorry that you're having to make this type of choice at

this stage of the game. It really is just not fair. The medical world

does not offer us many choices other than toxic, toxic or....yep, you

guessed it, toxic.

Not being in your shoes though, I don't know what would be the best

course of action. Should you try it in the hopes that it slows the

progression and try to deal with the side effects? It really comes

down to a quality of life choice, in my opinion.

I told my doctor that I would rather live with the PF slowing me down

than live in my bed, doing nothing because of all the side effects and

the illnesses I caught from being so immunosuppressed. They all told

me it was my decision, and after talking it over with my family (who

all cried but agreed it was my choice) I made the decision to quit all

the drugs. That was 3 years ago. I quit the Cellcept (my 3rd drug at

that point)immediately after the talk, and I finally got off the

prednisone 2 years ago after slowly tapering off for many months.

I take N.A.C. and I also use a few supplements like AHCC, fish oil,

and sometimes MSM, and that's when I remember to take them all. Some

days all I take are Aleve and pain pills.

BUT, I am not YOU! And I would never presume to tell you what you

should or should not do. I can only relate my experience with the

cytoxan and hope that it helps you ask the right questions and make an

informed decision. I hope your Pulmo is the kind who listens and will

be willing to talk with you about all the choices you may have.

I wish there were MORE choices for you. My heart is just breaking for

you knowing how hard this must be, and I wish that I could do more for

you. All I can do is tell you that you are in my heart and my prayers

and I will be sending all the positive and healing vibes that I can to

you.

With hugs and love and prayers,

Babs in Texas

> > >

> > > Just back from little trip to Alabama last week. Travel is

> > certainly

> > > not as easy as it used to be.

> > > I had visit with my pulmo doc on Monday. He is considering cytoxan

> > > treatments if I don't stabilize by March. Also he sent me to my

> > > internist who added something new to my list of ailments - unstable

> > > Type II diabetes. We are trying 1000 mg of Metformin twice a day

> > with

> > > Glipizide but that will change to insulin if that does not

> > stabilize

> > > within a month.

> > >

> > > So what is cytoxan like? It looks nasty.

> > >

> > > Yet again, normal is not what it was yesterday.

> > >

> > > S, Lubbock, TX

> > > NSIP w/PF, Celiac & Type II diabetes

> > >

> >

>