Rare Case of Disabling P
Dear Ed: Have you ever heard of Acrodermatitis Continua of Hallopeau? It's a very rare form of psoriasis. It's only on the hands and feet. I have no fingernails and my fingers are engulfed in pus, swelling and extremely painful. I have tried every medication for psoriasis and am now undergoing 6 weeks of Chemotherapy. (I've had one dose so far.) Do you know of anyone else who has this? I am now 100% disabledcan't use my hands at all. -Thanks, Wanda
Dear Ed, I e-mailed you earlier but have a hard time typingso I have someone else doing it for me.
I went to 12 doctors before I was diagnosed correctly. I then went to the Mayo Clinic in Minnesota (twice). They diagnosed me with Acrodermatitis Continua of Hallopeau, a very, very, rare form of P. (Only 11 cases since 1900.) I have tried Tegison, Methotrexate (pills and injection), PUVA, Grentz Ray treatments, every topical ointment up to Dovonex, Accutane, Cyclosporin (Sandimune and Neoral), antibotics, accupuncture, Homepathic medicine, Holistic medicine, Cellcept, Soriatane and Cytoxin Chemotherapy (1 intravenous dose for 45 minutes). I have probably forgotten some.
This started almost 4 years ago (I am 40 now). I am 100% disabled, receiving SS Disability. The only place I have P is on my fingers (all 10). I have no flaking, just swelling, pus and can't bend my fingers anymore. I have lost all of my nails (the first thing to happen). The most painful thing I've ever endured!
I am now going through 2-chlorodeoxyadenosine (cladribine) Chemotherapy. I will have 2 hours intravenously once a week for six weeks. I've had one dose so far. I'll keep you posted after I'm finished.
After all of this I have to say I still have faith! Thanks for listening and for you site, it's great! -Wanda
Ed's Response: I had not heard of Acrodermatitis Continua of Hallopeau, Wanda, but found it in the Dermatology Online Atlas (see link in Other Places) and under the "A's"not under "psoriasis" (once I found it, though, they did describe it as a form of psoriasis). There is also a set of pictures posted there.
Your story should shame most of us, Wanda. I suppose you would welcome the sufferings of "good old plaque psoriasis" after enduring what you are currently enduring. I am at least glad to hear you qualified for disability, and it certainly sounds like your physician is treating you aggressively. (No surprise there: Sounds like your case is what a derm might call a "career maker"especially if he is successful.)
Do stay in touch, Wanda. I am most interested in how you progress. Those of us whose P appears to get worse over the years cannot help but learn about cases like yours and wonder.... Any breakthroughs in your case are occasions for us ALL to celebrate.
In the meantime, any readers who are familiar with this rare and debilitating form of psoriasis are encouraged to e-mail me. What's worked? What didn't work? How are you managing? -Ed