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Medical Forum / Diseases and Disorders / Lupus / January 2006Cellcept/...
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)) >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 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 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 "Connective Tissue Disorder" is an outdated term.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 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 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))) > 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 Happy to say with Hubbys help we got the house close to perfect today....all we like is the kids bedrooms and they are going to do the majority of that.....thank you for your advice as for hardwood floors we just signed another lease with our complex..I will look for the book at the library and look into the air purifiiers...I really need to quit smoking.... neways.... Jenn > Happy to say with Hubbys help we got the house close to perfect > today....all we like is the kids bedrooms and they are going [quoted text clipped - 3 lines] > need to quit smoking.... neways.... > Jenn Hello Jenn, congratulations working on issues. Do the kids have toy boxes? I had one made cheap wood, but solid and my son was told to pick up, every night after supper and put away in toy box. The cover was covered to make a window seat. If there's stairs, I used to put things on one step - less trips up and down. One lady I know has baskets in kids room for their dirty clothes, (whites in white basket), coloureds in coloured basket), so then kids carry baskets to the laundry area. Then when clean and folded each has their clothes in one coloured-basjet and carries theirs back to their room and puts away clothers themselves. Another newsgroup shares work-saving tips like these. Maybe we can also do such here. Helpful for everyone. So if you discover any, let us know, might help others as well. I won't pick on you about smoking. I'm sure it's hard, but your health... Each person has to find their own way. Some calculate the money and aim for a goal of a trip somewhere if they saved the money. There's a stop smoking newsgroup, probably have lots of tips. Good luck and let us know how you're doing. Again, good on you. :) Hugs J ty for the feedback...I am feeling a lil bit more energetic... my kids have lots of toy boxes...big cardboard ones lol and my laundry situation is bad cause I don't have washer/dryer yet and hubby recently lost his job ...I find myself doing alot of washing by hand and half the laundry i have should be tossed allready,working on that one a lil bit at a time ....newayz Jenn > ty for the feedback...I am feeling a lil bit more energetic... my kids > have lots of toy boxes...big cardboard ones lol and my laundry situation > is bad cause I don't have washer/dryer yet and hubby recently lost > his job ...I find myself doing alot of washing by hand and half the > laundry i have should be tossed allready,working on that one a lil bit > at a time ....newayz Hello Jenn, Must be tough not having washer and dryer. I'm sorry to hear you have to do washing by hand. I know what it's like bringing up kid in poverty. No car, no vacations, no outings, used clothing. Used skates and hockey equipment for him. We got by. We did have washer and dryer and cable TV. No kid games (like today's) though. Have you asked a church for help? Sometimes chruch ladies can find something - even if old wringer washer - hang to dry. Must be tough without employment. Sending well wishes for you all that things will improve there Hugs J Jenn, I don't know where you are on this big world but here in the US there is a webpage called FREECYCLE.org (find it byGoogling), there are 'chapters' sorted by county, some by zip code. Pepple list things they no longer need but don't want to throw in the land fill. Esp. environmentally minded affluent people who will often donate very good appliances after remodel, moving house, etc. I have belonged for about a year and have seen many washers & dryers, fridges, steros, children's gear & toys large & small, furniture enough to furnish a homeless family's entire apartment. As well as small stuff like books, craft items. Is short, maybe you can find a W&D there. All you need is a way to get them home. So arrange for a friend's pickup before answering an ad!  SignatureNancy F , SoCal, USA Christ, Chorus, Cats, Computers >> ty for the feedback...I am feeling a lil bit more energetic... my kids >> have lots of toy boxes...big cardboard ones lol and my laundry situation [quoted text clipped - 20 lines] > Hugs > J Thanks for the feedback J & Nancy....I will check out the website when i get a chance...& I know my old man will find work soon ,thanx for your concern . I didn't mean to sound like we r that bad off the boxes just serve the purpose lol > Jenn, > I don't know where you are on this big world but here in the US there is [quoted text clipped - 8 lines] > there. All you need is a way to get them home. So arrange for a friend's > pickup before answering an ad! Sounds like an excellent tip, Nancy. They don't do that here, they sell or keep them until they can sell. Some of the older models are better than new. And newer models they don't give as long a warranty anymore these days. I bought used 4 years ago - knock wood, still going strong, but I don't "heavy use" So I guess like you say, it's a good deal if can be found nearby and maybe check if working before paying and taking away? Or choose name brands to make sure can get parts? I think if I found some, I'd check first with a repair person, for availability of parts or known problems. they collect appliances at curbsides and spruce them up and sell them. J > 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)) jenn glad to hear cellcept is working for you i tried it for 5 months with no results. have tried so many in last year and half! started with metrotrexate and worked my way to cellcept. now on chloroquin 250mg dailyand mirapex .25mg on raising doseage each week now up tp 5 a day dont know how high doseage has to be to start helping right now feel like in full blown flare with fm and lupus everyday! |
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