Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 Joyce, like you, if given the option of trying the drug or dying, I would try the drug. I will be praying that it works for you and with no side effects. My older brother was a Doc, and he told me to chew gum all the time. He said it keeps the salivary glands flowing and avoids the blockage. The worst time I had with it was when I started a new job. The stress was high, and of course my body took it out on me. I was so swollen on my right side, and had to go to work that way, and when they asked what was wrong I lied because I didn't want them to know about the AI diseases. My flares since then haven't been as bad, but they are frequent. I think right now it's a combination of a bad tooth and the gland. I need to see the dentist and either have it pulled or if possible, a root canal and cap. Sheesh!!! One thing after another huh? I had to be taken off the Imuran because it began affecting my liver. It did seem to be quelling the progression. But that's hard to determine too. Maybe my body just quit producing the fibrosis? And the Cellcept just didn't do anything. I had a 10% drop in my PFT's last year. I go back in April for the next set and we'll see what this new Doc finds in comparison to Octobers tests. See, the set that showed the big drop was done by a girl who couldn't quit talking about her boyfriend and his financial problems, so we're not certain that there may have been some operator error. This next set will be compared to the ones taken by a professional, in a setting that I trust, so I'll know more then. And when I tell people that I won't take the drugs again, that is just my personal experience and take on it. If they said to me you'll die without THIS drug or THAT drug, I would take it and hope like heck that it worked. I'm not to the point of needing more drugs. I'm fairly stable and doing ok on the O2 for now. Have you had any problems with TIA's with the lupus? I've had 3 or more mini-strokes, and every time they do the tests they come back inconclusive. Doc says the clots are small and gone by the time we do the tests. Lupus is notorious for the strokes and heart attacks. I try not to worry about it, and take my aspirin every day.... I will be praying for you, that the Rituxan helps. Please keep me posted! 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 > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 Joyce, thanks! I have to admit, my Chaz was quite the hottie when he was young! LOL! And h is quite beautiful. I've had total strangers come up to me just to tell me how gorgeous she is....and the main blessing is that she also has a beautiful soul and heart. Lost your Santa hat to the Grandbaby huh? LOL! They certainly have a way of charming folks, don't they? Can't wait to have a few of my own.... 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 > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 Babs, I had one stroke in the early 90s. Then I began having what they thought were TIAs. But, after a bunch of tests, they discovered that it was seizures caused by the scar that the stroke left in my brain. I took seizure meds up until about 2 years ago. With these diseases we get to do it all. There is hardly a part of my poor old body that has not been affected. Stay strong! 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> > > > > > >> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 Joyce, I hear ya! Seems like if you have one AI disease it gets lonely and starts throwing a party.... I'll likely end up back at the Doc this week for another MRI. My left arm is acting strangely and I'm told I'm not speaking quite right. Mixing up my words. Sure signs of a TIA. Told my daughter she needed to get an inspection quote when I meant insurance...that kind of thing. The Neuro was just so cheerful though when he told me " oh, these are just the babies. The big one can happen at any time " . Really, really didn't need to hear it said in quite that way. He was actually smiling, like this was a good joke between us. Strange duck.... I'm glad you were able to get off the seizure meds. That must have been a relief. You stay strong too!!! I'm thinking of you! Hugs from Babs in Texas > > > Babs, > > I had one stroke in the early 90s. Then I began having what they > thought were TIAs. But, after a bunch of tests, they discovered that it > was seizures caused by the scar that the stroke left in my brain. I > took seizure meds up until about 2 years ago. > > With these diseases we get to do it all. There is hardly a part of my > poor old body that has not been affected. > > Stay strong! > > Hugs, Joyce D. > PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA > 2 COR. 12:10 ....when I am weak, then I am strong. Quote Link to comment Share on other sites More sharing options...
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