Home Forums General Discussion 5 Years on AP – New Challanges??

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  • #304125
    DianeTexas
    Participant

    Here I am into year 5 of AP doing pretty good but looks like I have new symptoms.  I was originally dx with MCTD but all my symptoms were RA so we changed to that dx.  Over the past 4 months I have had this weird rash on my upper back during this time also my hands have gotten extremely dry with one small tendon on a ring finer becoming hard.  Just two weeks ago developed a large, bright red round rash on my hip. 

    Off to the dermatologist.  She sees the right hip and immediately wants to biopsy saying it looks like Morphea (limited scleroderma).  My joint issues have been a little bothersome lately but I have had a good deal of stress so I dismissed it.  I know I should wait until the results come back but I want to start making a plan.  I thinking a Lyme test might be the first thing?

    I had dropped my mino from 200mg a day to 100 (gradual decrease over the past 8 months cause I was doing so well).  So I am think it should be back to 200?

    Any and all thoughts are welcomed!  Sorry I am such a lurker – always reading the board but rarely posting.   I wish I had Maz's wonderful abilities on communication!

    Diane

    #346928
    Maz
    Keymaster

    [user=1324]DianeTexas[/user] wrote:

    Here I am into year 5 of AP doing pretty good but looks like I have new symptoms.  I was originally dx with MCTD but all my symptoms were RA so we changed to that dx.  Over the past 4 months I have had this weird rash on my upper back during this time also my hands have gotten extremely dry with one small tendon on a ring finer becoming hard.  Just two weeks ago developed a large, bright red round rash on my hip. 

    Off to the dermatologist.  She sees the right hip and immediately wants to biopsy saying it looks like Morphea (limited scleroderma).  My joint issues have been a little bothersome lately but I have had a good deal of stress so I dismissed it.  I know I should wait until the results come back but I want to start making a plan.  I thinking a Lyme test might be the first thing?

    Hi Diane,

    Really sorry you're having some hiccups like this, but you read my mind, as I was thinking “get checked for Lyme,” too. The round rash on your hip may even be a late-disseminated Lyme rash, but would likely need an LLMD for confirmation. These weird, late stage Lyme rashes can mimic or trigger all kinds of skin issues, like morphea, dermatomyositis, Acrodermatitis chronica atrophicans, lichen sclerosis, etc…. The biopsy may help in dx, but would be even better if some infectious pathology could be run, as sometimes spirochetes are actually found in skin lesions.

    http://www.nature.com/jid/journal/v100/n5/abs/5611650a.html

    http://dermatology.cdlib.org/rxderm-archives/morphea

    Where is the tendon hardening…in the palm or higher up the finger? If in the palm, under the ring finger, is it possible you have a Dupuytren's nodule? If so, these are pretty benign, but can cause contracture of the finger if they get too big and the tendon gets too tight and contracted. I have one on my left palm, as does my Dad – they are common in folk with folk of northern european extraction. I've managed to control it with the use of NAC (N-acetylcysteine) and it hasn't got any bigger in 4 years. Here's a past discussion thread and Trudi posted a great website on this:

    http://rbfbb.org/view_topic.php?id=3175&forum_id=1&jump_to=28640

    Just some thoughts to ponder further with your doc, Diane….and don't worry about not visiting often here…that's the hope!!! That folk get better and go on to live their lives again. Blips sometimes happen along the way, so you know everyone is still here, if so. 🙂

    Hope you get this figured out soon – you're already on the investigative trail, so hopefully won't be long till you get sorted. Please stay in touch on this and let us know how you make out. If you need help with how to go about IGeneX lab testing, let us know.

    Peace, Maz

    PS Dropping your dose may have something to do with this, if untreated coinfections are in your mix and have become opportunistic. 😉

    #346929
    mschmidt
    Participant

    I completely agree with Maz–I would get a Lyme test from Igenex.  I remember getting a weird purplish (my skin is pretty brown normally) rash on my inner thigh that didn't hurt but, was very unusual, with a ring-like pattern.  It didn't go away until after I started taking the Minocin.  I wasn't diagnosed yet with scleroderma, and now that I look back, I think it could've easily been a late disseminated Lyme rash.  It gradually disappeared about 6 months after starting Minocin and clindy iv's.  Overall, my blotchy skin tone really evened out after starting not just my scleroderma treatements but, also my Lyme meds.  Since your skin is the largest organ in your body, I think it's totally possible for Lyme to be mimicking the skin manifestations of scleroderma.  I know my skin has loosened up more since adding Lyme meds to the mix.

    I hope you get some answers soon because it's so frustrating not knowing what you're dealing with.  Keep us posted!

    Maria

     

    #346930
    ideamktg
    Keymaster

    Yeast can cause rash.

    Sierra

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