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About j3ss

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    Gallatin, TN
  1. Thanks for the info, Janey. A lot of that is similar to what I've read, but it's definitely more detailed and that always helps. I'm really trying to find a good doctor right now. None of them seem to quite understand what it is they're dealing with, and many I have to press for answers. I understand that they don't have them all--no one does--but it would be nice if they'd at least feign a bit of interest for what I'm paying them. I'd been enrolled in a study by the University of Texas Southwestern in Dallas, but they can't get their stuff together long enough to schedule my follow-up appointment. On top of that, they're trying to charge me for that follow-up visit that I was originally told was part of the study. On top of all that, I'm driving ten hours from Nashville to Dallas for this, and they're being anything but cooperative. Pardon my bitterness, but it's been a frustrating year. Thanks again for the well wishes. Sometimes that's the best feedback I can get. :)
  2. (I may have posted some of this information before, but I couldn't find the topic, so I'm sorry if any of it's a repeat.) After years of remission, my morphea has apparently reactivated. I lost full flexibility in my right knee when it all began about fourteen years ago; now it's my hip. It's nothing too painful or disfiguring right now, and seems to be moving more slowly than the first outbreak, so that should be a good sign. I hardly remember anything about the first time, since I was so young, so it is hard to compare. Anyway, I went back to one of my dermatologists here in Nashville, and he prescribed me Elidel cream. I delayed using it as long as possible because when I picked it up at the pharmacy, it came with two pages of info about the risk of cancer associated with use of Elidel. No offense, but that's one thing I don't have yet, and I'd really like to keep it that way. I was wondering if any of you here might know a little more about this cream and its use in treatment for morphea. The doctor assured me that there have been no reported cases of cancer linked with its use, but all the same, I'd like a little more piece of mind from someone who's not trying to sell something. Thanks -Jess
  3. Thanks you two. I'll be sure to keep you posted. Jennifer - Haven't heard of Plaquenil, but I'll look into it. The last time I went to the dermatologist (a couple of weeks ago) he prescribed Elidel. I haven't used it yet because when I picked it up from the pharmacy, it came with two printouts about the plethora of side effects it may produce, including cancer. Call me crazy, but that's the one thing I don't have yet, and I'd like to keep it that way. (fyi - I forgot to mention that my morphea is the linear kind)
  4. (Of all the luck.) I posted my story in a "get to know you" thread, but here's the short version: I developed morphea when I was somewhere between age 5 and 7. The initial flare-up was pretty bad and soon covered the entire front of my right leg (I honestly don't even remember this happening .... In my mind it's like, one day I was fine, then I had a little red rash, then I couldn't bend my leg). I didn't begin any treatment until I was thirteen because my parents couldn't afford to take me to a dermatologist. Anyway, after I finally did begin treatment with Clobetasol and Dovonext, we saw a lot of improvement. I think some of that may have been attributed to the eventual burnout as well, but either way it was nice to finally be able to regain some flexibilty. My skin also softened a lot. All was well for a while. I learned to deal with my condition and became confident that maybe it would just stay as it was forever--no better, no worse. Then, this past year, right after I got married, the area on my hip started to change. It had never really concerned me before, because the plaques were pretty light, no indentation that I could see, etc. At first, I thought I was seeing things: was that vein more visible? Was that spot there before? Was the skin always that shiny? Now, it's unmistakable. Especially the pain that I feel most days, just under the skin. Also, the atrophy has begun to set in. Is this normal? Any idea how much worse it'll get? I'm afraid that the process has begun to speed up a little. I'm due for my first phototherapy session in a couple weeks, so I'm hoping that it won't get irrepairably worse by then. On a side note: In February ('08), I enrolled in a morphea study by the University of Texas Southwestern in Dallas. The doctor there is the one who referred me to the dermatologist who'll be doing my phototherapy. Thanks for listening. -Jess
  5. Hi everyone. I've been browsing the site off and on for a while now, and I've finally decided to join the forums. My name is Jessica. I'm 20, and was diagnosed around age 7. A lot of the early developments are hard to remember, since it all happened when I was too young to really understand what was going on. Anyway, I've got some type of morphea running from the top of my foot up to my hip on my right leg. Depending on which dermatologist you ask, it's either generalized, linear, or localized. I think they tend to go with linear these days, but either way, it's definitely not systemic. Of course, there's probably always a chance for it to change later, but all my blood work has been coming back fine so I try not to worry about it. (For what it's worth, my dad was recently diagnosed with rheumatoid arthritis. Some people tend to believe there's a connection between the two.)
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