Itchy Situation

I would have imagined that being on short-term disability would have led to frequent updates on this blog, but in fact the opposite has happened. Throughout this experience I have found myself online and e-connected less and less, with the exception of my iPhone. (Or maybe the iPhone was the reason in the first place? Hmmm...) Here's a recap of what's been going on with me....

In August of last year (2008) I noticed that scrapes on my knee and elbow weren't healing. After a visit to my family doctor and a course of antibiotics that failed to clear it up, I was told to see a dermatologist. I went to a practice in Washington Twp and was quickly diagnosed with plaque psoriasis. They prescribed a topical steroid to be applied twice daily. A couple weeks went by and I went in for a follow up. The lesions were continuing to spread, and a stronger steroid was prescribed, along with talk of UVB light therapy. The light treatments were only 1-2 minutes each time, three times a week. A few weeks later when the psoriasis had spread to every limb and my scalp, I made appointments for the UVB "light box."

For 4 weeks I went in almost every other day to stand in a vertical box with intense light to rid myself of this ailment. But the lesions were spreading still, eventually hitting my hands, face, nose.... the dermatologist eventually was convinced I needed a "biologic," a drug that would actually attack the immune system. You see, although psoriasis looks to be a skin condition, it is actually an immune disorder. My body makes skin every 2-3 days...yours, (assuming you don't have psoriasis) makes new skin every 30 days. That dermatology office, however, didn't handle those types of drugs. So they referred me to a rheumatologist in Haddonfield.

One blaring thing I've come to know all to well is that every doctor you try to see the first time is a process that takes weeks, sometimes months. This rheumatologist was no exception, and my appointment was scheduled for mid-December. I was also going to need blood work done (including liver and kidney tests), a tuberculosis test/screening, and a pneumonia vaccine. Rather than go to the first rheumatology appointment and just have to turn around and get those things done, I went ahead and took care of it all before the appointment.

The day finally came afor my appointment. After a quick look he suggested I start Remicade, a drug given by IV infusion. He said that after the first infusion I would need to do the second one 2 weeks after, the third one 4 weeks after that, the fourth one 6 weeks after that, and then continue going forward with an infusion every 8 weeks. I agreed and went to schedule my first infusion. The nurse informed me that the earliest they had was 12/29/08. Kerri and I had already planned our Christmas vacation to see my family in Florida...12/23/08 thru 1/3/09. So I went ahead and took Monday, January 5th, 2009 for my first treatment.

A week went by and I received a call from the nurse at the rheumatology office. After looking into the insurance she informed me that the payment for each infusion was covered 80/20, leaving me with 20% of the cost, or $400 each time. Let's see, $400 a pop works out to $1,600 in just the first few months. After talking it over with Kerri, we decided to try to get into the hospital where she works, the Hospital of the University of Pennsylvania. The insurance coverage was 100% there, and had we thought of that or known the costs earlier we would have started there. Ah well, what's that old saying about hindsight?

So I called UPenn and talked to the scheduling people in the rheumatogly department. Earliest they had? January 29th. Another 5 weeks. We were leaving for vacation, I was covered head to toe in psoriasis sores, and there was nothing I could do about it for over a month. I cried. Hard. Right there on the phone with the lady from UPenn. I had hit some dark moments, battled with the itching and embarrasment of how I looked, pleaded with God, and I was at the end of my rope....

Florida was a pleasant change. Mild temperatures, relatively stress-free. At one point near the end of the trip I actually thought I was seeing major improvement on my arms. Renewed hope set in. Maybe the worst was over and I could cruise through to the January 29th appointment and it would all be over soon. I arrived back in New Jersey on January 3rd, 2009. That's when everything changed.

The pain came quick and hard, like the worst sunburn you've ever had, and it was neck to ankles. My back, shoulders, back of my arms, thighs and ankles hurt the worst. And the psoriasis looked different. It was red, almost purple, with thick scales raised well off the skin. For a week I hobbled through it, wincing at every bend at the hip, screaming just to sit in my car. Then on Sunday, January 11th, as I went to put my shoes on and leave for work, a pain so intense that I literally saw stars shot through my body and almost made me faint. I sat and cried again...again begging God to take it all away. I ended up making it to the church, but left after an hour or so. Later that day I was admitted into the ER at UPenn Hospital.

The second dose of dilaudid numbed the pain to a bearable level. The third and I almost felt like a normal person. The dermatology department came evaluate me, and a wonderful doctor, Dr. Groft, said she wanted me back in her department in two days. It turned out the dermatology department handled the biologics at UPenn, not the rheumatology department. I went home on pain killers and a "soak and smear" regiment, where I would bathe for 30 minutes, not dry off, and then apply a topical steroid ointment consisting of a steroid in petroleum jelly and mineral oil. I can't begin to describe what it feels like to have that stuff on from neck to toe....ughh. But it helped calm the lesions down.

I saw Dr. Groft on Tuesday, and she recommended Enbrel, a drug that works like Remicade but that is administered by self-injection(!) once a week. Well, once a week once it's under control... once every 3 days for me. She, along with Randy (my boss) suggested and encouraged that I go on short-term disability from work until the psoriasis was under control. So be it, as long as we could knock it out quickly I was ready for anything. The Enbrel took a while to come due to a mismatch of my last name in the computers between UPenn and Independence Blue Cross. With a last name like D'Amico, you never know how a system will handle an apostrophe. Some leave it out, DAmico. Some put a slash, D/Amico. Some put a space, D Amico. And some take it the right way. Once that was all sorted out I was shipped the medication and had yet another bout of renewed hope for a quick recovery.

As I sat there, needle in one hand, a pinch of my thigh in the other, the only though on my mind was, "seriously, I have to jab this with 'a dart-like motion' into myself?" Kerri offered her help, but I knew I needed to be able to do it myself. BAM! Ok, it was in, now push the plunger.... Let me tell you, the consistancy of Enbrel is like syrup when it's cold, and even leaving it out to get to room temp does little to thin it out. It takes a good two or three minutes to push the whole amount in. Of course today, as I give myself my 30th injection, I have figured out a few tips and tricks.

Speaking of today, April 22nd, 2009: I am still in moderate pain daily, taking pain meds as needed (about every 4 hours). I did go to Florida for about a month to see if warm weather and sunshine would help. It didn't do a whole lot, but it was good to see my family. I still haven't seen a dime from the State of New Jersey for my disability claim, which is now in the appeal process. We have lawyers working on the case for us, pro-bono. Dr. Groft wants to give the Enbrel at least a full 15-16 weeks before changing to a different medication like Remicade or supplementing methotrexate, a chemo-like drug that adds dangerous immuno-suppressant effects. May 7th I meet with Dr. Van Voorhees (an international expert on psoriasis) and Dr. Groft at UPenn Hospital for ideas on my next step. All in all I have to repeatedly and intentionally seek out God every day and trust He has a purpose for these struggles (Romans 8:28).

I have to mention here, not because I know she'll read this, but because it's true - I have the best, most caring, loving and understanding wife in the whole world. It hasn't been easy on either of us, and I am proud of the maturity she shows throughout it all.

I'll attempt to update you all more often...and if you pray, please include me, I can use all I can get. But know this: I trust Him even in my darkest hours, and I know He is with me every step of the way.

-Jim D.