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I needed to share something... by d.- on 2002-04-11 13:12:36

I have lupus and it's a bitch. I guess I'm mentioning it because in my own sideways way I hope to create awareness of this disease FOR WHICH THERE IS NO CURE. It's been hard for me to describe what this feels like -- biologically it's 'sort-of' like sickle-cell anemia, 'sort-of' like cancer and 'sort-of' like AIDS. It's in the blood. It's and auto-immune disorder and affects the connective tissue, and, since everything (except bone) is connective tissue it's everywhere all the time... I just this second saw a website which is very cool, and the author explains his experience with lupus through visuals. Go to: http://www.hamline.edu/lupus Then see: the journal of Ross Sonnenberg Peace, d.-

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Re: I needed to share something... by tommie on 2002-04-11 17:42:05  |  Reply to this

Jeez, I'm sorry to hear that. It tends to be harder on young women than on other populations. I hope you are taking care of yourself and getting treatment. Re: Re: I needed to share something... by d.- on 2002-04-12 13:27:16  |  Reply to this   I am taking care of myself. It is hard, however, to plan a course of treatment as the black and gray zones of lupus are unknown. But I'd be a stem-cell guinea-pig in a heartbeat! :} Re: Re: Re: I needed to share something... by tommie on 2002-04-12 16:26:40  |  Reply to this   Are you taking prednisone? Re: Re: Re: Re: I needed to share something... by d.- on 2002-04-13 13:06:05  |  Reply to this   No. The plan is to first try Plaquenil. Corticosteroid shots are the last line of defense... Re: Re: Re: Re: I needed to share something... by d.- on 2002-05-31 12:45:59  |  Reply to this   Hey -- I just did a short-course (six days) of: Methylprednisolone. Glutocosteroids are nasty. I'm guessng they're fairly toxic too. Bleh. Re: Re: Re: Re: Re: I needed to share something... by tommie on 2002-05-31 15:42:41  |  Reply to this   I don't think they're so bad if only used short term, although, I understand, even short term use can cause you to add some pounds. So have they helped any? How long before they are supposed to show some results? Did you have to do this because your symptoms are worse? Re: Re: Re: Re: Re: Re: I needed to share something... by d.- on 2002-06-01 13:11:52  |  Reply to this   this most recent flare-up lasted 2 weeks with multi-symptoms... not good. Or fun. Like Huey Lewis says: " I need a new drug! One that won't make me sick - " Re: Re: Re: Re: Re: Re: I needed to share something... by d.- on 2002-06-01 13:13:32  |  Reply to this   this most recent flare-up lasted 2 weeks with multi-symptoms... not good. Or fun. Like Huey Lewis says: " I need a new drug! One that won't make me sick - One that won't make me crash my car - or make me feel three feet thick"... Re: Re: Re: Re: Re: Re: Re: I needed to share something... by tommie on 2002-06-02 18:26:50  |  Reply to this   Well, I hate that you have to deal with this. What do the doctors say you can expect; ie, do they believe it will be managable? Re: Re: Re: Re: Re: Re: Re: Re: I needed to share something... by d.- on 2002-06-03 13:03:48  |  Reply to this   thanks for the supporting words of comfort... my brother has MS, so both disorders definitely put us in the genetic garbage category. Life expectancy used to be ten years after diagnosis, but (they say) lupus is manageable and life expectancy can be normal (they say) as long as treatment is used. What do you know of lupus? Re: Re: Re: Re: Re: Re: Re: Re: Re: I needed to share something... by tommie on 2002-06-04 05:03:41  |  Reply to this   I'm sure I do not know as much as you have learned. I know that it is an often insidious autoimmune disease with no know cure at this time. It's symptoms can range from being cosmetic to morbid. It seems to "prefer" females and can be harder on the young ones. Recent attention to autoimmune diseases seems to have directed the medical community to finding some more effective treatments. You are, I trust, seeking the most up to date providers and demanding their full attention. Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: I needed to share something... by d.- on 2002-06-04 13:33:19  |  Reply to this   I live in time-warp here, in this bizarre little desert town. Who would ahve thought Palm Springs to be so back-asswards? Certainly not me, but there you are... My point being that up-to-date anything is hard to find, especially in the health care area. I like my doctor. She's fairly approachable but VERY busy as there are only TWO rheumatologists to cover five cities and NONE OF THEM deals specifically with lupus. I'm taking what I can get. I check online for clinical trials yet the're all out-of-town. I must needs stay in town. I would guinea-pig in a heartbeat for stem-cell research! Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: I needed to share something... by tommie on 2002-06-05 19:46:31  |  Reply to this