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Disappointed By Enbrel and Kalawalla
from Steve W.

Hi Ed:  My name is Steve. I am 40 years old. I have had P since 1989 in one spot or another. I just thought I would let you know about my experiences with Enbrel and then Kalawalla

I had P in patches here and there mostly on my lower legs and knees, elbows and a little on my scalp. It wasn’t too troublesome as it was mostly confined to areas that weren’t readily visible and didn’t get in the way. I could keep it controlled very well with Dovonex and clobetasol in rotation.

About three years ago, after siding the house, I noticed that when the calluses on my hands went away P was underneath. I could see that wherever I had gripped the hammer handle in my left hand and where I handled the siding in my right that’s where the P showed up. It soon spread to cover my entire palms and is now trying to curl around my fingers. The clobetasol and Dovonex simply won’t control it.

After much contending with my insurance company, they agreed to pick up the tab for 80% of the [Enbrel] shots. This left me with approximately $34/shot at twice a week amounted to over $250/ month.  I was happy to see every area of my body completely clear — except my hands!  After 3 months of Enbrel and one month of Enbrel plus clobetasol and still no improvement of my hand P, I stopped the Enbrel

My next experiment was diet. After being told my cholesterol was too high to take Soriatane, I went on a good carb good fat, no refined sugar diet:  only whole grains, lots of salmon, vegetables every day. I lost 30 lbs. which made me feel better but something in my diet caused me to develop red patches on my skin. They didn’t turn into P but worried me nonetheless. I would say the diet had no effect on my P after 7 months of salmon, whole wheat bread and broccoli.

I then tried Kalawalla. After reading the hype on there website I was really optimistic.  I took it faithfully for 4 months and then doubled the dosage for another 4 months, all with absolutely no results.  I did some experiments mixing it with water and applying it topically and then wearing surgical gloves overnight.  At first it seemed to help but then it started to cause inflammation.  I’m going to try experimenting more with the topical approach this time maybe mixing it with Eucerin and no gloves or cotton gloves. For now I get some relief using clobetasol twice a day for a week at a time and then stopping for a week or so.  I use Eucerin cream all day every day. It really helps. More recently (6 months or so) P has shown up on the soles of my feet.

I have found that by leaving lesions completely alone (not scratching) they will disappear on their own. Conversely scratching will only cause them to spread. This is almost impossible to do at my job because I use my hands and am on my feet all day.  I am seriously thinking of switching professions so as to lessen the daily “injury” to my palms.

This last week has been rough. I was sick with some sort of virus which made my hands flare way up. I am considering the Mayo clinic which is only a 5 hour drive in hopes they might find something that will work. My derm says he’s almost out of ammo for my P.  I asked him  for Methotrexate after a friend was completely cleared using it with no side effects, but my derm is reluctant to prescribe it because of the risks. Frankly, after reading about the potential side effects, I am not too thrilled about trying it myself. I am reluctant to try Soriatane because of the side effects, also.

Ed, you have lived with hand and foot P far longer than me. Hats off to you for the work you do to help us. Thank you for this web site.  It has been a good resource for me. My wife and I got a good laugh out of your story about the green screen beta tester. You have talent for writing Ed.

I would have to agree with your theory of a genetic predisposition to P with many different triggers. Though they never developed P, my mother and grandfather both have had different skin disorders during periods of high stress. My mother had erythema multiforma during different stages of her life and my grandfather had an unknown rash from head to toe toward the end of his tour in the Korean War. This would lend credence to the hereditary aspect. Any encouragement or insight would be greatly appreciated. Thanks again Ed  -Steve W.

*****

Ed’s Response:  My hat’s off to your experimentation and tenacity, Steve.  You apply the kind of courage and stick-to-it-ness this wretched disease requires of us all — if we are to obtain/maintain any sort of relief.  I want to bring up the subject of occlusion, which for me has been the most effective treatment for severe hand P.

Hand P has been, for me, the third most difficult form to “handle.”  (First most difficult has been scalp P, second most difficult has been nail P.)  Until I started taking the biologics, the only way I could improve both scalp AND hand P was through occluding my topicals overnight.  For hands, this requires so-called “food handlers’ gloves.”  Not to be confused with the tight-fitting latex gloves worn by health professionals, food-handlers gloves are like thin baggies with fingers.  They’re used in deli’s and butcher shops.  They are too loose fitting to provide any kind of sealed occlusion by themselves, so you have to tape them tightly to your wrists before you go to sleep.

The problem with food handlers’ gloves is they are easy to tear.  I probably ruin every third glove with the tape I use to “seal” them to my wrists.  I can put on and tape the first glove without incident, but to put on and tape the second glove I must handle its tape with my other, now-gloved hand.  Invariably the tape will tear open a finger or two if I’m not extremely gentle.  And when a finger tears open the occlusive properties of the glove “evaporate.”  (If I’d go to bed at a decent hour, I’m sure my wife would help me do this and I’d ruin fewer gloves!)

I can tell the occlusion is doing its job — moistening the skin and allowing the medicine to absorb deeply — the next morning: the skin on my hands is mushy-pliant, somewhat pruned (like being in water too long) and easy to cut or bruise if I’m not careful.  For better or for worse, after even one hand washing, all this pliancy goes away and my hands return to their normal selves.  By then, of course, the meds have had several hours to sink in and do their job.

At most, a week of this will bring about improvement — if I’m using the right med for the moment.

Some derms don’t seem to believe in occlusion.  There are many topicals — mostly the high potency corticosteroids — that warn against being occluded.  Fortunately for me, my derm DOES believe in occlusion, and what I’ve always occluded on my hands has been a high potency corticosteroid (either clobetasol propionate or betamethasone dipropionate — both in ointment [as opposed to cream or lotion] formulation, and both available as generics).  One of the reasons why occluding high potency corticosteroids may be shunned is that, along with increasing the effective potency of the steroid, occlusion also increases the adverse side effects, including thinning skin and possible absorption into the blood.  My derm believes occlusion for hand P is relatively safe — so long as there are no open wounds — because the skin there is thicker.  To be as safe as possible, when I apply the corticosteroid ointment before the gloves, I make certain to apply it only to the lesions, not to unaffected skin.

I’m sorry to hear your experience with Enbrel went as badly as my own.  (I can say this now that I am convinced the Enbrel had nothing to do with my testicular cancer, which occurred while I was using Enbrel.)  So many people report such wonderful results from that biologic drug!  It was very depressing for me to see little or no improvement for the six months I used it. 

Our mutual disappointments must have to do with the nature of our P.  To build lesions on our skin, our immune systems do not rely on the specific T-cell activity that Enbrel suppresses.  Fortunately for me — and hopefully, for you — all the current raft of biologics for P work a little differently.  While Enbrel did nothing for me, Raptiva cleared me quickly and maintained that clearance until I stopped taking it.  Had it not been for my P-arthritis, which it did not help, and which became quite severe during the year I used Raptiva, I would unquestionably still be using it.  My skin was nearly flawless!   If I could take Raptiva along with the Humira — another biologic, which works well on my P-arthritis — I would gladly do so (if my insurance would cover the enormous cost!). 

Good luck with your continued battle, Steve.  I have a good feeling that you will maintain the fight, and while few of us have won complete victory, it’s only by doing battle that we enjoy any relief at all.  -Ed

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