Home › Forums › General Discussion › 2 years later! UPDATE scary..

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  • March 29, 2011 at 10:44 pm #305502
    scottishprincess
    Participant

    Hi Everyone,
    So sorry it has been over a year since I last posted.. Wow where do I start, well AP as you know worked for me amazingly after I would say about 3 months withing 7-8 months I experienced full remission.. after 12 months I started to feel really tired and my ankles started swelling up again, but I just thought that it was because I had missed a couple of days minocylcline and so I just decided to increase my dose slightly (from 100 to 150) anyway fast forward 2 weeks and I started throwing up randomly? I stupidly put it down to stress.. fast forward another 2 days, finally went to see my doc.. he sent me for a blood test on the Friday afternoon.. Sat morning at 8am my phone rang.. it was my doc, my results came back and he advised me that I was in a serious state (would not say what) told me to get to the A+E dep of my hospital as they were waiting for me!

    Long story short I had developed a condition called Goodpastures Sydrome which had wiped out 80% of my kidney function within about 4 weeks.. I had emergency blood transfusions, plasmapheresis and aggressive chemotherapy for 3 months to get rid of the circulating antibodies.. I can honestly say it has been the worst year of my life.. The docs still do not know what caused it? They thought at first it may have been the Mino but I don’t believe it was just doesnt make sense.. They say it can be caused by smoking but I’ve never smoked in my life! Anyway miraculously I have managed to recover about 25 % of my kidney function and can lead a pretty normal life (without dialysis) but I am not starting to get the scleritis back again.. which has been gone for nearly 2 years!!

    Not sure what to do and whether I can every take the AP again??

    Would love some advice

    Thanks

    Warmest wishes

    SP

    This post has been moved to the General Discussion area as you have asked for input from others. Personal History section is for authors’ journal notes only and cannot generate responses from others. RBFV

    March 30, 2011 at 2:04 am #356406
    maz.aust
    Participant

    Just bumping this up to the top of today’s posts so someone can reply/see it.

    Good luck,
    Maz – Aust

    Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
    Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

    Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
    1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
    1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

    All off days Probiotics

    March 30, 2011 at 3:33 am #356407
    RickinCA
    Participant

    I’m curious as to whether there has been another similar AP case. Presume it would have been documented and we would have been aware of it had there been.

    But definitely a bit strange.

    Wish you the best, scottishprincess.

    March 30, 2011 at 5:18 am #356408
    Maz
    Keymaster

    @scottishprincess wrote:

    Not sure what to do and whether I can every take the AP again??

    SP, so sorry to hear about your run-in with Good Pasture’s syndrome. I’ve done some checking around and haven’t been able to find anything related to this condition and minocycline use. However, that doesn’t mean there haven’t been case reports of such…just that I haven’t been able to locate them with some quick searching. 😉 It is a type II hypersensitivity reaction, which seems to mean it can have an intrinsic (self) or extrinsic (external to self) cause.

    It appears from the reading I’ve quickly done tonight that this condition has been tied to genetics and toxic environmental exposures, such as hydrocarbons and pesticides, but also to viruses and pneumonia. The Merck Manual has this to say:

    http://www.merckmanuals.com/professional/sec05/ch059/ch059b.html?qt=Goodpasture Syndrome &alt=sh#sec05-ch056-ch056a-962_c

    “Pathophysiology

    Goodpasture’s syndrome is the combination of glomerulonephritis with alveolar hemorrhage in the presence of anti-GBM antibodies. Goodpasture’s syndrome most often manifests as diffuse alveolar hemorrhage and glomerulonephritis together but can occasionally cause glomerulonephritis (10 to 20%) or pulmonary disease (10%) alone. Men are affected more often than women.

    Anti-GBM antibodies are directed against the noncollagenous (NC-1) domain of the ?3 chain of type IV collagen, which is found in highest concentration in the basement membranes of renal and pulmonary capillaries. Environmental exposures

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