Re: Cellcept/...rant
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Re: Cellcept/...rant
| J | 16 Jan 2006 09:23 |
> they tell me i have discoid lupus..which i thought would mainly affect > the skin...but sometimes I just feel dead...they gave me 1 of those 6 [quoted text clipped - 13 lines] > I am to not have major organ involvement......and my heart goes out to > all who do cellcept won't help messy housekeeping. Pace yourself but have a list of things to do each day - schedule a rest time each day and some fun time, so it's not all drudge. :) If you feel less well one day, skip the less important things and do a bit more on a better day. my friend's had your same symptoms for over 30 years. She uses an inhaler for the asthma and avoids things that flare that up. - she has an air cleaner (2 actually) - one in the bedroom and one in the living area. Make your home easy to care for. Carpets are awful for dust mites and asthma. Same for clutter. And requre a vacuum cleaner which is harder for people with stiff jjoints. Bare flooring is easier to keep clean of dirt and dust bunnies with only the occasional vacuuming. Like me, she probably got away with taking some NSAIDs (from time to time) for the stiffness. If heat helps the stiffness, relax in a bath each day, while you're reading "The Lupus Book" by Dr. Daniel Wallace to see how he would treat your variation of Lupus. I think Cellcept's for Lupus Nephritis. See what his most recent book says he would use it for...and how he would treat discoid. If cool helps, use icepacks, while you're reading. Hugs J
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| Jenn L | 16 Jan 2006 04:31 |
they tell me i have discoid lupus..which i thought would mainly affect the skin...but sometimes I just feel dead...they gave me 1 of those 6 day predisone packs(at last visit) ...I felt alive on the 5th day but then back to fatigue...I get mad at myself for being a messy housekeeper.....this summer I came down with asthma for the first time.....I was even hospitalized over the night... feel like this all fits in together and some of the mctd info i read sounds like it could. I don't have arthritis but a lot of stiffness in my shoulders and sometimes pretty bad in my knees....I think i need more tests and to be put on predisone regularly or something similar again....They debated putting me on methotrexate but then decided on cellcept....which BTW may cause drowsiness as well...now that I'm through whining I remember how lucky I am to not have major organ involvement......and my heart goes out to all who do
(((SQUEEZES)))
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| Wende | 16 Jan 2006 00:23 |
One of my favorite terms is UMCTD with SLE (Systemic Lupus Er) features!(undifferentiated mixed connective tissue disease) and positive ANA with collagen vascular disease. Give me a break. I am waving both hands because I feel like double blah! I have been in bed all day. Wende
> Yeah, mixed connective tissue dissorder, MCTD, is what a lot of folks on > this group have. It means you have symptoms indicative of several [quoted text clipped - 24 lines] >> I feel BLAH raise your hand if you feel BLAH >> Jenn |
| Mary Rawle | 15 Jan 2006 23:35 |
Yeah, mixed connective tissue dissorder, MCTD, is what a lot of folks on this group have. It means you have symptoms indicative of several different disorders. "Connective Tissue Disorder" is an outdated term. It is now called "autoimmune disorder" and so everything is covered under that term. Myself, for example: I have a positive ANA, a negative DNA. I have autoimmune thyroid dissorder (which, by itself would be called Hashimoto's disease), I have Sjogren's Syndrome, which is autoimmunitly to the exocrine glands of the body...such as those that lubricate the eyes, nose, mouth, lungs etc. I have joint and muscle pain and I am sensitive to sunlight. Do I have lupus? Do I have MCTD. As my doctor says "we simply treat the symptoms as they occur."
Wait !Wait! fatigued? did sometone say fatigued? I musta dozed off there. Yeah, I have that in copious quantites...
Is this of help to you? I only wish to help, and to let you know that this happens to other people too.
Mary
Disclaimer: I aint a doctor with a degree, so nothing that I say in my letters should be accounted for as real science. Duh.
> Thank you,Mary... Hey i am bugged because my doctor has told me I test > for mixed connective tissue disorder > what does ne1 know about that... > I feel BLAH raise your hand if you feel BLAH > Jenn |
| Jenn L | 15 Jan 2006 19:20 |
Thank you,Mary... Hey i am bugged because my doctor has told me I test for mixed connective tissue disorder what does ne1 know about that... I feel BLAH raise your hand if you feel BLAH Jenn
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| Mary Rawle | 15 Jan 2006 19:09 |
>I have improvment with cellcept <yea!> > I know that I'm still fairly new to this group > and wish all well .....Please respond if you have discoid. ..kinda need > a sounding board ....the real me does this ...,dot,... thing so bear > with me ((squeezez)) HI Jenn, and welcome to our group. Feel free to "dot" all you want. I am a major "dotter," and I have been here for... has it been a century yet?
I do not have discoid lupus, but I have suffered with Systemic Lupus since I was in my teens, which means almost thirty years ago. I have never had a real remission... only good control by using lots of medications. Even under control, I tire easily, and if I push it, I am a wreck the following few days. I have to listen to my body... but of course sometimes I don't because I really want to do something and am willing to suffer the consequences.
Does any of this sound like you?
This newsgroup is a very friendly group of people. I hope that you will continue to come here and share. I am glad you are feeling some improvement with the Cellcept, and hopefully one of our friends here can be a better "sounding board" than I am.
But I just wanted to say "welcome"
Mary
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| Jenn L | 15 Jan 2006 17:56 |
I have improvment with cellcept <yea!> I know that I'm still fairly new to this group and wish all well .....Please respond if you have discoid. ..kinda need a sounding board ....the real me does this ...,dot,... thing so bear with me ((squeezez))
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