Re: Joyce/lupus issues

[Guest guest]

Joyce, I've had some serious problems with my teeth as well. For the

longest time we couldn't figure out what the problem was, but now I

know it's the sjogren's. There have been a few times that my glands

were so blocked, or dry, that my face swelled up like I was storing

nuts for the winter in them. My dry eyes are also a problem. I'm

having a flare right now in my right salivary gland. No fun.

I have used Cytoxan, Imuran, Plaquenil (I guess to quell the flares

and then hopefully the progression of the PF)and Cellcept. And of

course the dreaded Pred. None of the drugs seemed to help, and did a

whole bunch of harm. I wish I had never taken any of them.

I haven't tried the Rituxan, and probably never will. After the side

effects from the others I don't trust the medical doctors to have my

best interests at heart with these meds.

I don't use drugs for the lupus. I take Aleve and Darvocet. I also

have rheumatoid arthritis and have recently had both knees give me a

tough time. The rheumy was talking about replacements. I'm not

rushing into that either.

I could list all the problems I've had due to the medications but it

would make this a VERY long post, so suffice to say I'm not an

advocate of the drugs they use to treat PF, or auto-immune diseases.

I asked my last Pulmo how many folks he was treating with PF and he

said " you " but insisted he had treated many in the past. There just

isn't enough out there in the public about this disease, and

obviously our doctors aren't saying much to their staff.

When I'm asked " what do you have " and I reply PF I get blank looks.

Or they'll respond " oh yeah, cystic fibrosis, I know what that

is " ......ah well, we just have to keep getting the word out about

this disease and keep fighting for better treatments and more funding.

I would like to know how you respond to the Rituxan, and I certainly

hope and pray for you that it helps. Keep fighting! And thank you for

the kind welcome!

Hugs!

Babs in Texas

> > > >

> > > > Zena,

> > > > I know you won't see this for a bit because of the time

> > difference but

> > > I was wondering if you could share with me what kinds of

symptoms

> > you

> > > have/had from the dermatomyositis? How was it diagnosed? My

doctor

> > is

> > > planning a biopsy of the rash and blistering on my hands but I'm

> > having

> > > alot more fatigue recently and some muscle and joint pain. I was

> > > wondering if you had those kinds of symptoms?

> > > > Anything you'd care to share I would greatly appreciate. I

feel

> > like

> > > my body is revolting against me. LOL

> > > >

> > > > Beth in NC age 48 Fibrotic NSIP 06/06

> > > >

> > >

> >

>