Friday, June 30, 2006

The Sadness

Sometimes I fall into a melancholy and sadness related to psoriasis. Maybe it's more apt to call it self-pity. Lately I've had difficulty sleeping--well at least at night. My mind races about side effects of medications (recently my eyes have had a dry, numb feeling after taking cyclosporine), when the onset of response to the meds will come, wondering "is it getting better", knowing that it is in fact getting worse, what meds I will rotate into next knowing I can't stay on this one forever, what side effects and benefits that drug might pose, and if there is another way altogether.

By the end of the many thought loops I just find myself sad--and fatigued.

Perhaps this is the "quality of life" issues that studies cite so often. I tell myself psoriasis certainly isn't worse than cancer or a whole host of other terminal illnesses. Psoriasis doesn't kill (but I suppose the meds and therapies can over time). So when a study says that patients with severe psoriasis have similar quality of life issues as those with terminal illness, maybe the reason stems from the similar nature of treatments with a tinge of hopelessness mixed in.

That's what makes me sad.

I've experienced many tears and sadness fighting traffic three times a week to get to the clinic for UVB treatments only to get burned for days at a time over my whole body. I've tackled staring at the dermatologist, he staring back at me, wondering what to do with me next. I've faced the hopes and fears of a myriad of treatment options--both western/eastern, traditional/nontraditional, natural/pharmaceutical, etc.

Yeah, there's more. But I'm falling into the pit of self-pity again.

Certainly others have faced worse. And others are just as sad--even depressed--over similar conditions I might experience. That's our lot in life--it's not a lot, but it's our life. The hardest part is finding the courage everyday to see that it is my life and the many precious gifts I have in my possession. It doesn't always solve the sadness or insomnia, but the thoughts tip the scale just a tad bit away from thumping on the sad side.

Tuesday, June 27, 2006

Derm Visit

Visited the dermatologist this afternoon. After two weeks of cyclosporin (Neoral) I have shown little improvement (which is about what I expected anyhow). In spite of rising blood serum uric acid levels and slightly elevated triglycerides, he increased my dosage to 300mg/day from 200mg. I also received a prescription for Genraf instead of Neoral. I'd never heard of it before but apparently it is equivalent to (and most importantly for the HMO cheaper) than Neoral.

We'll be moving in a little over a month. If stress increases the psoriatic activity, it should be skyrocketing soon!

Wednesday, June 21, 2006

Oh How the Years Go By

I just had (not celebrated) my 35th birthday. I joke with my wife that my hair is falling out from old age. This "deforestation" comes actually from Soriatane though I have fears that the reforestation process may not arrive soon enough to counter the aging process. I count the years of my life is a number of ways:

Years since birth: 35
Years with psoriasis: 28
Years as a SF Giants fan: 26
Years as a Christian: 21
Years as an adult: 17
Years as a SJ Sharks fan: 14
Years married: 12
Years as a father: 11
Years in post-high school studies: 9
Years as a minister: 7
Years working as an environmental scientist: 2
Years with hair loss: 0.5

What is striking is, next to birth, is psoriasis. I have lived with psoriasis longer than most of the benchmarks of my life. I can't remember life without psoriasis. During these 28 years I have had brief remissions a few times:

9 years old: When we had a pool in the backyard
19: When I took methotrexate for the first time
22: When I went to China for six weeks
33: When I took cyclosporine for the first time.

Funny way to look at the journey. But, yeah, oh how the years go by.

Monday, June 19, 2006

Deal or No Deal

When I approach those treatment crossroads I often feel like I am playing Deal or No Deal. The option of Cellcept, out there for a few months, sounded great--like Cyclosporine without the nasty long term side effects. But what lie behind the Cellcept curtain? To find out I would have to give up my current treatment. That was the deal: let go of one to grab hold of the other unknown but promising. After a few weeks I wish I hadn't let go at all. That's the nature of the game.

It doesn't have to be that way, though. Because my psoriasis is so severe and aggressive, I need to push for more transition time. If the next drug doesn't work then the consequences won't be so severe. Talking to my old derm for twelve years confirmed the strategy. (He also suggested trying methotrexate again since it's been a couple of years. Don't know if I'll take that deal!)

The last few days I've had a mild cold and low grade fever. Actually skipped a dose to see what my fever would do. My skin is still quite red everywhere from my chest down and my forehead up. Perhaps the cyclosporine is taking hold? I finally felt the flare subsiding some after four straight weeks of outbreak.

Friday, June 16, 2006

Fifth Grade Graduation

Today my older daughter graduated from fifth grade. As I drove to the clinic afterwards for my weekly blood test, I thought about how this (almost) eleven year-old almost never was. Back a decade-and-two-years ago I was just married. I happened to be taking methotrexate. Suffice to say we feared for this honeymoon baby. My derm called the manufacturers of MTX and found that it passes through the semen and could cause birth defects in my child. He suggested we abort the child. For religious reasons we did not. My wife didn't even have an amnio for fear of endangering the pregnancy.

My daughter is as healthy as they come--tall, smart, and a great friend. My son and second daughter are also healthy children, six and five years old. None of them have psoriasis (yet) and none of them had birth defects (my wife was born with spina bifida). The genetic and pharmacological odds against us, we have three growing children.

I am a proud father who realizes that severe recalcitrant psoriasis vulgaris need not deny me of life's basic joys. Certainly there are depressing moments like waiting weeks for the new drug to "work" but it never does. But there are those moments like today when, in the midst of my psoriasis journey, I remember that I am on a greater life journey.

Just Two Weeks!

Upon reflection I am amazed at how fast the psoriasis spread on my body. Just three and a half weeks ago I was pretty much under control with Soriatane and a lower dose of Narrowband UVB. My scalp, nails, hands, and feet left much to be desired yet I could function well each day. The Soriatane peel of my hands and feet had passed through some nasty phases over the past six months, but seemed to settle down. In just two weeks my skin went from fairly clear to raging mad. It's pretty scary to think about.

Of course, these were two of the more stressful weeks I've had in recent memory. I wonder how much stress plays a part in it all. When I saw Dr. Koo at UCSF in Dec. 2005 he said that about 50% of psoriasis patients are adversely affected by stress. I didn't think I belonged to the wrong half--now I am a believer. The problem is my life happens in spurts. Another spurt is coming again in August too.

So why change medications in the first place? My hope was to stay on the Soriatane for a year, then rotate with something else (probably Cyclosporine). Cellcept was introduced by a team of doctors who examined me in March. They didn't have any other ideas since I had failed just about everything else out there including the new biologics Amevive and Enbrel (all those shots!). 6-Thioguanine is also out there. But if two weeks of not suppressing the disease takes such a toll I'm not at all sure I'll take that step soon.

The plan--stay on Cyclosporine for 3-6 months then get back on the Soriatane and NUVB. Hopefully the peels will not be so intense (but I'm sure they will be) on the feet and hands and the scalp improves. For now I'll live with the NEW set of side effects that cyclosporine and immune suppression bring. At least I have history with cyclosporine and my doctors are EXTREMELY careful monitoring me.

Tuesday, June 13, 2006

Back on Cyclosporine

Talked to my derm this afternoon. He is willing to let me go back on Cyclosporine, starting me at 200mg/day. I know he is being cautious, but I am glad for it. My issues last year included uric acid elevation, magnesium suppression, and hypertension. We'll monitor these closely. My bp is around 125/70.

So Cellcept was a no go for me. Too bad, I had hopes that with lower toxicity than Cyclosporine that it would have a chance.

Stopping after all?

After just over three weeks on Cellcept I may be stopping after all. The last couple of days I had a burning and tingling sensation over my trunk and neck. I felt little confidence in using the drug after talking to the pharmacist and the derm. Part of the problem of using this off-label is the lack of studies with psoriasis patients. Besides, as my wife says, I am experiencing all of the side effects without any of the benefits. My skin is breaking out badly day by day. Not sure if I can make it too much longer as it is.

What's next? Maybe back on Soriatane+NUVB? That's not a great solution, but I don't worry about immune suppression that way (at least from the inside). Or back to Cyclosporine--but it's only been less than six months since stopping it after thirteen months continual therapy.

Ah, the life of a severe psoriatic. I need a different gig!

Thursday, June 08, 2006

Raising the Dose

It's been almost three weeks on Cellcept. Times have been quite stressful with an all week intensive class, a house on the market, and a one week road trip. So far my skin has increasingly worsened, but not enough to warrant too much concern. It's still early, and no doubt rebounding with stress and from the effectiveness of the Soriatane+NUVB both of which I have stopped.

Today I've increased from 1.5 g/day to 2.0 g/day. I have some mild nausea when I take the two pills together--much like I had when I first starting the therapy. The nausea went away in about a week or so. Hopefully the same will happen with taking two pills.

As for blood counts, my WBC in on the low normal side. Blood work looks fine. I know my derm is quite busy, so I'm hoping he is checking my weekly blood labs. It's a paranoid feeling thinking that my WBC are low but my derm hasn't had a chance to look at it. Third lab tomorrow.