Re: Question for Zena re: Dermatomyositis

[Guest guest]

Babs,

My Pulmonary Fibrosis was attributed to Lupus at biopsy. Since then there have been many different theories and various titles given to this hideous battle that I wage. They can call it what they will, treat it or not treat it. It is what it is and it is going to kill me. I cannot believe that there is another known disease that has so few definates. The general population have no idea what it is and KNOW that all lung diseases are caused by smoking (never smoked) and that we deserve no research monies and no compassion.

What is worse is that medical professionals and techs do not know what it is. I have had nurses, techs, secretarial help, etc. ask me ...what is that? Thursday, when I called the new consult doctor's office to make an appointment, the girl that was making appts. asked me....what was I being seen for. Then she said.....fibro..what?....How do you spell that? Now, this is the big time expert doc that comes from Jewish and Duke and he has people working there that do not even know what Pulmonary Fibrosis is, no clue.

Sometimes, I think we are at the mercy of idiots.....!

What immunosuppressant have you taken for your connective tissue diseases? I just got taken off Cellcept after 9 years. I began to decline more rapidly and he decided it was not doing the job. He has ordered and I have been approved for Rituxan treatments. As of now, I have not agreed. Do you have experience with this drug?

I have had so much trouble with the Sjogren's, It has helped destroy my gums and teeth. (along with pred) I particularly have many problems with salivatory glands. PAINFUL!

Babs, I think we have more people in Texas than all the other states combined.

Take care, glad you are here.

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> > >> > > 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> > >> >>

[Guest guest]

Yes, even a hand soap. And, sometimes we suddenly develop allergies

to thinks we've used for 20 years.

> > >

> > > 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

> > >

> >

>

[Guest guest]

IGNORE my comments Beth, CLEARLY after reading more of your posts I can see this is way -off....good luck with the testing ...I just hope you find some RELIEF SOOON!

in Oz> > >> > > 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> > >> >>