Dayne and Gardner (MA, USA)
This PRP support group has been a great resource and comfort since my husband, Gardner, discovered it here on the web. Here is Gardner’s story, which we will endeavor to update every quarter. In this way, perhaps our personal story – and changing as it will over time – will in a small measure repay the wonderful use the other personal stories and information here have been to us.
Note that any medical or treatment statement I make is based only on Gardner’s experience or my limited knowledge. If anything seems interesting to you, do your research, please!
Gardner is 50 years old, an Anglo Saxon (literally, one maternal grandfather English, the other German) male, fit and in good health although he does have a suspected autoimmune disease which has been in remission (and remains so even through this PRP) for years.
“Quick” PRP disease history from onset to mid January 2006
Around April 2005 a small (dime sized) lesion appeared on Gardner’s upper right chest. He is prone to skin afflictions of the minor variety – a bit of fungus here, spot of eczema there. By July the spot had grown to the size of a quarter and, with the fear it could be some spreading fungal outbreak, he saw his internist at Mass General Hospital (MGH) in Boston, MA where we live (happily, as it turned out, close to MGH.) He did not like his current dermatologist at MGH, so sought a new referral and received a September appointment with a fairly new doctor with her own practice. (An aside – it is hard to get appointments with dermatologists here in Boston, don’t know why.) He saw this woman three times, the last with me in attendance on October 11 as his spot had gone from small to larger and spreading spot by the time of his first appointment with her (when she prescribed first a fungal and then, by telephone, steroid cream – seems the dermatology default!) to a red “rash” beginning to mottle his back by his second appointment to a full on red bloom from neck to face, back to trunk, trunk to arms by the third visit.
I accompanied Gardner because I was not sure of the skill of this new doctor to address whatever was happening. One clue was that by this appointment she had run through maybe four versions of steroid creams to no good effect and still prescribed yet another steroid cream at this last appointment!
Our unsatisfactory visit and his rapidly deteriorating condition convinced me that he needed to call our internist and get a referral to a senior dermatologist. We love our internist and, when it is clearly a medical problem of significance, she is able to refer her patients to senior MGH staff and quickly. Within a few days, Gardner was seen by Dr. J. at MGH. Dr. J. is a psoriasis specialist, studying and working with Dr. F. (now deceased) who was an innovator in psoriasis treatment, including light treatment.
Gardner’s original dermatologist had done a biopsy on his second visit and on the third told us it was “confusing”. Dr. J. had a total of four biopsies and a few blood tests done on Gardner over the first and fourth visits (he saw Dr. J. every other day for the first month plus of treatment). The number of biopsies was to gain information from multiple sites because PRP is a confusing disease to diagnose. (Gardner calls it an “affliction” which seems more apt for the patient). The biopsies were read by the evenings of the day taken, and we were called after the second group by Dr. J. to confirm the PRP diagnosis and with the instruction that Gardner start on Acitretin (high dose synthetic Vitamin A) immediately. He had been put on a Prednisone 10 day taper (i.e., start high and taper down to stop) by Dr. J. when the original biopsy suggested Pityriasis Rosea, for which Prednisone is an accepted and effective treatment. Prednisone is not recommended for PRP, but by then Gardner was on it and, with the rapid taper, soon off. We do not think it either helped or hurt, but Prednisone is a powerful drug, and Gardner was happy to be off it.
The every-other day appointments with Dr. J., who said his last PRP patient had been five years earlier, included visits to the exam room by every dermatologist who walked by and, in early November 2005, Gardner was a feature of medical grand rounds for the Harvard teaching hospitals dermatology faculty and students. By this event, Gardner was a bright, deep red head to toe, his palms and fingers had shed (the fingers like round sausage casings, slipping off like enormous rings) and his soles were detaching from his feet. The skin elsewhere, except for a very few islands of sparing, had shed completely. The group conclusion was PRP, and the recommended treatment to remain on the Acitretin.
Although we did not recognize it at the time – so much is shedding – Gardner lost a lot of body hair (back, arms etc) and all hair thinned some (including eyebrows). He lost all his facial lines, too, a benefit we use for comfort and humor (as in, now I will have to get that face lift to look his age).
Gardner was photographed extensively and signed a waiver to for the photos to be used for teaching/texts. The email sent re: grand rounds called him “the worst case of PRP” the dermatology department had seen. One comment we heard from various of the doctors who had dropped in from the beginning was that Gardner’s peeling progression seemed very, very fast. This peeling is not the same as the flaking that occurred later, but massive sheets of skin or palm or sole.
By mid December, Gardner had improved markedly, his Acitretin was reduced and he started 3 day a week narrowband light therapy.
But by January 9, 2006, Gardner had deteriorated significantly, was re-spotting (if that is possible to imagine under his now re-reddening skin), flaking much more and was convinced the light therapy was more hindrance than help. He saw Dr. J. on the Wednesday of this week resulting in the light therapy being discontinued (I think psoriasis specialists somehow think it more apt for PRP than it is, but I am guessing Gardner will not return to it) and the Acitretin dose re-upped. Already, three days later, he looked better.
Emotional arc to date
This disease came on so subtly at the first that we did not think much except maybe he had a fungus. Then it hit so fast and so hard – he went from being able to be in public to using the freight elevator at our office within three days! – that we almost had no time to react because by then we actually had what seemed like (and still seems to be) competent medical help in Dr. J.. Not perfect help; doctors are generally loathe to say “I don’t know” or “I’m not sure”, but Dr. J. and some wonderful old curmudgeon who is considered the big expert in PRP among the Harvard teaching hospitals, seem to have a grasp of the disease course and treatment, granting that every doctor seems to have some large or small bias to something that may or may not work for this odd disease.
Gardner has controlled his emotions reasonably well. He is a good researcher (found this wonderful support group), he complies pretty well with treatment, and he is quite game on the somewhat alternative, palliative measures my mother recommends or I discover on the internet. My emotions are less certain.
At the worst, I really feared for our livelihood as we are financial professionals with our own wealth management/financial planning/investment firm serving a fairly small, high-touch client base. I know that none of us is particularly comfortable seeing people who look like Gardner did at his worst. Human nature, lovely or not, has a hard time with overt disease and physically distressed folks. We can decry or try to change this, but when a client is paying to be well attended to, he or she is generally not crazy about seeing us look like Hell.
Fortunately, the freight elevator period, during which only I saw clients, was (in retrospect) quite brief. But we did not know it would be brief and I, especially, was pretty distraught. Our financial security is in our professional practice. We generally go to our clients at their homes or offices, so the office being flaky did not matter, and much is done by telecommunications, but still . . . And, as Gardner has become viewable, but still does shed small bit of himself, clients have been remarkably generous and welcoming and understanding from serving hot tea, to bringing him a blanket for his lap, to sharing their own stories of bizarre skin diseases.
The very, very worst of it was about two weeks ago when Gardner was beginning to deteriorate and seemed just entirely lost in a fog. No memory, no hearing, no energy . . . He did recognize that he was partially deaf from the skin build up in his ears. He had suspected that might be happening, but I think it just felt like one thing too many to face until he was really into a muffled world that made him and me nuts.
In generally, the affliction saps a lot of time one takes for granted until it has to be dedicated to the amazing number of steps it takes to feel comfortable and presentable. Gardner says he is like having a baby or toddler, it takes three times as long to exit the house as it did before. Bathing, scrubbing, showering, foot and hand attention, vacuuming shoulders and head or dressing in multiple, cream/tan colored clothing (to minimize the look of flaking), napping . . . it all takes forever.
Treatments and products that seem to be effective
Acitretin – definitely positive response for Gardner. His lips do peel more with the higher dose, so lots of lip balm, but overall if you did not know he had been bright red and peeling a month ago, you’d think he’d just come back from a spa vacation. He is blush, but not red; his wrinkles and crinkles are gone; his facial skin is a smooth, even texture. One client said “Wow, members of my family pay big bucks to achieve that youthful look.”
Dovonex (calcipotriene) – a prescription cream (Vitamin D related, I think) for his hands and feet. (I say hands in part because he uses them to spread the Dovonex on his feet and in part because when he stopped using it for a few weeks to see what happened, his hands as well as feet deteriorated). I read about Dovonex on the internet, it is for psoriasis, but does something related to cell growth and Dr. J. was game to try it. It has worked well for Gardner.
Aloe juice – purchased by the quart at Whole Foods Market 100% aloe juice. Gardner uses it after bathing or showering and it is very soothing for itching. He follows the aloe with
Almond oil – light coating. Then he layers on the various products you all have mentioned for holding in moisture. Until this set back, he was using lighter and lighter products to no ill effect. That made laundry much easier (mix skin and Eucrin cream and you get a sort of slick cement in the tub).
Apple cider vinegar – puts about one cup in his bath water. He loves it, helps with itching and soaking off skin.
Support socks – for the period he had edema in his lower legs and feet. Note, he found he had to drink a lot of water during the periods his skin was not able to help him retain moisture. As he has improved, he has not had edema again (even with the recent backsliding), but during the worst of the initial PRP outburst, his legs and feet blew up like balloons.
Docusate Sodium Liquid – for his ears. This is a softener laxative recommended to him by his ENT (ears, nose, throat) nurse. Gardner’s college roommate (and good friend) is a pediatric ENT surgeon in Boston, and Mike had his nurse attend to Gardner when his ears clogged. (Mike also helped, as they were really, really clogged – and had edema, making the ear canal even tighter than normal). Use of this product (a drop in the ears 2 times a week at night with cotton to hold it in) helps the ear self clean by preventing the skin/wax build up from getting too hard to self clear.
Homemade cayenne pepper cream – a recipe from the Naval Medical Center Portsmouth, VA that really, really addresses itching. Gardner loves this stuff. It is quite the jolt when you first spread it on (and use rubber gloves), but it will not hurt-burn, and the feeling of heat and well-being after that first flush is wonderful. Also stops itching in its tracks!
Bacitracin – for the cracks on his feet. Gardner found that the Bacitracin is the only thing that has healed them.
Hand mitts for scrubbing off dead skin. We found a great type at Whole Foods Market, and he uses one on each hand.
Silk glove liners from WinterSilks.com – have helped Gardner keep the shedding contained when seeing clients (he just says he has a skin affliction and the gloves help) as well as adding warmth. He wears them all the time and we just bought lots of them in cream, blue, black . . . He also uses their silk long underwear.
Naps in the afternoon – turn out to be really important to his healing and to bed earlier. And I let him sleep later (very unlike me.) One doctor said “Let him sleep and make sure he eats lots of protein, his body is working hard making skin.”
Oops, I can’t leave this discussion without mentioning the trusty vacuum cleaners at home and office that do a quick touch up on Gardner before every interaction with the greater public, as well as keeping home and office flake free (okay, freer if not free).
We look forward to trying coconut cream/oil as many in the support group have recommended.
Small and big progress and warning signs
The signs of progress, aside from being able to go out in public:
At his best, before recent set backs, temperature regulation was better. Gardner went from never being cold no matter what to freezing all the time. For a while in January, he did not need as many layers and actually would warm up (and sweat a little) if over bundled outside.
Much reduced flaking. Smaller flakes from his body and entirely clear face and ears and almost clear scalp. Warning sign these past weeks has been the return of small scaling on his ears and forehead and scalp.
Body hair growth returning.
Red spots showing up – not good. The heralded the recent set back but, happily, have retreated this week.
My getting depressed! I am like the sensitive plant in our lives, picking up on the signs of change well before Gardner. I have always been this way, but generally the topics of my radar have been, say, invest overseas (did that very early for clients sensing shifts in the global economic/competitive landscape) or time to take a day off because we are both getting cranky with work . . . Now it is noticing Gardner’s condition and mood. I most hate when he seems to be in another world – I now associate that state with the beginning of physical deterioration.
I can say that we have gone from baffled to distraught and frightened about the rest of our lives to realizing that we will make it through this without losing everything, including our love for each other and our minds. But there are days . . . and it can be very, very hard.
I am so grateful that we have good health insurance. PRP is expensive to treat, the Acitretin alone is US$20 per pill, or $40 a day for Gardner. There is no way we could do this without insurance. As self employed individuals, we have a high ($50 per doctor visit) co-pay and high prescription drug deductible and co-pay; but our cost are limited to those co-pays and deductible. As I said in our Christmas letter:
No one of us thinks our life can change in a day, but this is the year that we have been reminded that it is possible. Katrina or PRP, sent to Iraq or sent home with a pink slip, life is inexplicable and unpredictable and one does not always get what one deserves. I hope that we see our way as citizens of a democracy to a national attitude that elects public servants who have the will to remind us that we are all in this together. That gated community is no substitute for an educated, health-insured and old-age-income-protected population. We make our future in every civic decision we take in the voting booth, in our community participation and our civic debate. Please do not sit on the sidelines in 2006. And may it be a very happy new year for you!
I thank every one of you for not sitting on the sidelines with PRP, but being generous and honest and inspiring in sharing your stories, your knowledge and your kindness.
Dayne and Gardner