Home Forums General Discussion Minocycline & Polyarteritis Nodosa

Viewing 6 posts - 1 through 6 (of 6 total)
  • Author
    Posts
  • #467436
    crowchez
    Participant

    I’ve been using minocycline for ankylosing spondylitis since 2010 with wonderful results. About 5 or 6 years ago, I started getting small red/purple spots on my lower legs. They were flat, didn’t erupt, weren’t itchy, would appear in the spring & fade in the fall. This year they are out of control. There are tons of them, from my ankles to my hips & for the first time, on my arms. They look like I walked into a mosquito nest. They are not flat this year but have bumps under the skin. I went to the dermatologist who was able to do a punch biopsy on one of them & it came back with a diagnosis of polyarteritis nodosa (PAN). It’s presumed to be cutaneous because I’ve had it for years with no other symptoms. I’ve seen articles on PubMed linking mino use for acne with PAN but a search here doesn’t turn up any hits. It’s considered an auto-immune form of vasculitis & treatment includes stopping mino & using immune suppressants.

    Both my PCP (who has continued prescribing mino after the rheumy I saw retired) & the derm want me to see a rheumatologist. I don’t want to stop AP so I would need someone who is familiar enough with AP to both continue it & switch me to another antibiotic in case mino is the cause. I’ve requested the dr lists for NY, NJ & CT but don’t see anyone who has this kind of expertise.

    So I’m wondering if anyone has any experience or knowledge of PAN & also any dr suggestions. I can travel if necessary. Thank you!

    #467437
    Maz
    Keymaster

    Hi Crowchez,

    I’ve put together a few doc options for you to check over and will send in a PM.

    #467440
    PhilC
    Participant

    Hi Crowchez,

    I suspect that you were not correctly diagnosed. I just did some quick research on polyarteritis nodosa and found no evidence indicating that it is a seasonal disorder. Basing your diagnosis on a biopsy result while ignoring the seasonal nature of this doesn’t seem very logical to me.

    What changed five or six years ago? Did you move? Did you take up a new outdoor hobby or pastime such as camping, hiking, or gardening?

    For years, red spots appeared on my lower legs every spring, and would be gone by late fall. Since I lived in a semi-rural area and had to walk down a long dirt and stone driveway, with grass and weeds growing on it, to reach the mailbox, I assumed that the red spots were caused by the bite of some kind of insect. Eventually, I concluded that they were most likely chigger bites, despite the fact that my red spots didn’t itch. For years, I didn’t react to mosquito bites, so it would not be unusual for my body to have a very subdued reaction to chigger bites. I suspect that the absence of a strong response to these bites was due to a dysfunctional immune system.

    By the way, after many years of not reacting to mosquito bites, I had my first normal reaction to a mosquito bite last year, in the latter part of the summer. What had changed? For the first time ever, I was taking low-dose naltrexone (LDN).

    This spring, no red spots appeared on my lower legs. What had changed? Last fall, I moved, and I now live in an apartment in a small town. There is now usually no need for me to walk through grassy areas unless I want to. And I avoid walking through grassy areas as much as possible, especially in the spring, not to avoid chiggers, but to avoid getting ticks on myself.

    I am not saying that your red spots are from chigger bites. What I am saying is that the seasonal nature of their appearance strongly suggests that they might be. It may be helpful to follow some of the recommendations for dealing with (and avoiding) chigger bites to see if you experience any improvement in your condition.

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #467441
    Linda L
    Participant

    Too many doctors too soon want us to use immune suppressants.These medications do a lot of harm in our bodies for ever.

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, supplements,
    vitamins and minerals.
    MTHFR heterozygous

    #467443
    crowchez
    Participant

    Yes Phil, I thought for sure these were some sort of bug bite until this year. Finding case studies linking long term mino use with PAN, I feel more confident switching to another antibiotic & seeing if the condition resolves. Thanks for your thoughts!

    #467444
    crowchez
    Participant

    Totally agree Linda. 🙁

Viewing 6 posts - 1 through 6 (of 6 total)

You must be logged in to reply to this topic.