Re: Joyce/lupus issues>>Barbara

[Guest guest]

Barbara... about your knees...My husband, Rich, went through 2 knee replacements last year. One in June other in Aug. The rehab is a bitc_. You Have TO do the exercises that are extremely painful, every day. He had to be pumped with pain pills so he COULD do them. Day after day after day. Bless his little pointed head he did them and his recovery has been slow (his age) but steady due to his commitment to the exercises. You're caught in a vise between RA and knee replacement rehab. but I wanted to tell you knee replacement is tough.

I hope you don't have to make that choice. You have enough plates in the air to juggle.

Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there!

Re: Joyce/lupus issues

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> > > >> > >> >>

[Guest guest]

Sandie, the main problem with my teeth is the dry mouth. It causes a

condition called s, which allows cavities to become more

prevalant, no matter how much you brush or use floss. I also have lost

3 teeth now because of the dryness.

The sjogren's also blocks my salivary glands and my face swells up. It

is quite painful. So far no infection with that, just with my teeth.

Canker sores are quite usual with sjogren's or lupus. My sister has

lupus and gets them all the time.

And now, my face is tightening from the scleroderma. I call it my

" redneck face lift " . LOL! It actually hurts and is no laughing matter,

but hey, who's going to turn down a free face lift?

I DID have a problem last year with my arms. I developed a symptom

called " lupus profundis " and both arms swelled up immensely. It was

scary! They also began dimpling and resembled orange rind. A round of

prednisone fixed me up. The Doc said it was a rare symptom of lupus. I

replied, that figures. Leave it to me to get the rare symptom.

I would assume the sores in your mouth are a result of an AI disease.

Did they biopsy one? Did they run blood work at the time the sores

were active? Did he refer you to another type of Doc?

It sounds like Sjogren's to me. But, I've been told numerous times

that I lack certain initials after my name....D.R.

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

> > > > > >

> > > > >

> > > >

> > >

> >

>