Home Forums Personal History and Progress Threads My personal journey with Scleroderma

This topic contains 3 replies, has 1 voice, and was last updated by  JustDiagnosedChris 2 years, 6 months ago.

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  • #308337
    JustDiagnosedChris
    Participant

    So, I saw my AP doc today. He said I’ve had it for about 8 years, but the disease is still in its “infancy”, and that I am the poster-child for being 100% cured of this disease. Such a weight off of my shoulders. He is also a Christian like myself. He tooks like 6 big tubes of blood and wants me to see a cardiologist and a GI doctor. He will prescribe me AP at my next appointment in a few weeks, and by then all the tests will be back. So happy!

    #372462
    JustDiagnosedChris
    Participant

    I’ve been on A P for a month now. I’ve noticed 2 main improvements so far. I had been getting this large clear bump on my ring finger for a year now. It would just be hard with a few red dots where blood vessels are. Everytime I would cut it off it would grow back in a month or 2. I also had these raised brown lines running parallel down my leg. Both these symptoms have gone way down. I can barely see the lines anymore and they aren’t raised. And the bump on my finger is gone. And there’s a scar where it used to be.

    #372463
    JustDiagnosedChris
    Participant

    Went to my AP doc yesterday. My anti-scl70 antibodies went from somewhere in the high 40s low 50s to 35. So I’m making progress.

    #372464
    JustDiagnosedChris
    Participant

    So,

    Since starting AP on July 31, 2014 I have made the following improvements.

    No longer have a severe heart arrhythmia that I had for 8 years prior to starting AP.
    Morphea has softened and hair is now coming through even the brown patches that used to be hard.
    My beard is growing in better and some of the bald spots that showed up have gone back to normal.

    The only complication is that I am still constantly being monitored for clinical symptoms of drug-induced lupus. I might ask Dr. F. about switching to a different antibiotic.

    And I seem to be getting lots of kidney stones. Not sure if it’s due to the chelative nature of the Minocycline with calcium or not. Hope to figure that out soon.

    Raynaud’s hasn’t improved yet, and glaucoma hasn’t either.

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