Diana's Blog

Over the last few days, I've been feeling more like myself, energetically - i.e., coming out of a slump where my body couldn't recover properly from the flu b/c I was on Humira, an immunosuppressant drug for psoriasis.

OK, I work pretty hard at perpetuating a positive attitude. But right now, I'm using this space to vent briefly on the confounding paradox that is my immune system.

The Humira partially cleared my skin, but not enough to make it woth feeling frequently sick and immunosuppressed. Today as I was out riding my bike and feeling so grateful to be able to be active again (even if I'm not 100%), I noticed some red spots on leg areas that had been temporarily clear. It's truly amazing, perplexing, etc... Feeling good overal = bad skin, and vice-versa. Do I succumb to chronic fatigue, and get a partial relief from the itching and depression and extremely high maintenance of applying topical steroids to a thousand spots with a Q-tip, or have energy, but accept the burden of maintenance? -- And be more unhappy/frustrated about the painful and ugly psoriasis symptoms?

For right now I've chosen having energy (not to mention avoiding the risks associated with Humira - cancer, lymphona, questionable safety during pregnancy, etc.). This means I still go to the dermatologist's office three times a week - yes, three times - for UV light treatment. I don't know yet whether this will be enough to maintain my sanity, but I'm hopeful! Now if I could fenagle a way through our beastly healthcare system, to get a light box for home - and save hours every week!

...Speaking of healthcare, Cigna is currently giving me flak about the UV light treatment, using whatever language they can imagine to make it so I have to pay a co-pay. Three treatments = $60 per week! This is not realistic, or justifiable. You go to the doctor's office, stand in a tight UV chamber for a couple minutes, and leave (without seeing a doctor). For whatever reason, the derm's billing service has a weird policy of billing UV treatment under a doctor's name - but it's a doctor I've never even heard of, who works in an entirely different office. Cigna has twisted this around to mean that it's still an "office visit" of some kind.

According to the National Psoriasis Foundation, UV treatment is to be billed as a "non-elective maintenane therapy" and covered 100% by insurance companies.

And so I embark on my 10th or so phone call about this issue....

Well, the only way to find out if some treatment or other helps with psoriasis is to try it...so on I go. I have a few insights, which are clearer now looking back at the last few years. Having no control group of myself, I don't know if I'm right, but here's what I suspect:

Sleeping in a hypobaric tent may have slowed down the progression of my psoriasis. During that time, my stress level increased (re: my job), and the spots on my lower legs seemed to intensify. But, it was as if something was held in check. (To complicate things, the slowed immune response meant I got sick more easily, which stimulated the immune response, and caused skin outbreaks.) The rapid worsening and creeping-all-over only began after I got out of the tent in 2007. So, tent = good for suppressing auto-immune disorders; but ultimately bad for overall energy and immune-system strength. Lovely paradox.

The psoriasis response in 2007-2008 seemed like a rebound effect; not only did the skin get worse, but it seemed to be moving very quickly, as if to make up for lost time.

When I tried hyperbaric oxygen therapy recently (after researching how it speeds up repair of body tissues), I felt healthier and more energetic, but my skin, which had begun improving in response to Humira (biologic immunosuppressant), suddenly stagnated and even made a turn for the worse again. Two days after my last hyperbaric session, the skin began to calm down again. In the meantime I'd also added PUVA (narrow-band UV light), thinking the Humira wasn't working for me. I know, seems chaotic and unscientific, but...the need for relief from psoriasis and its multitide of related frustrations is powerful.

And, with this stuff, you only have answers in hindsight! Currently, I believe Humira + UV light is helping the skin. How to boost or stabilize my energy levels remains mysterious, as effective solutions only seem to make my skin explode. Right now I'm hoping my attempt at tapering off topical steroids is successful. Maybe, in a year or two, my skin will rebuild the outer layer that has been dissolved by steroids, and tears in response to the tiniest of twigs!

Given how long it can take for the immune system to adjust to change, I still believe that in time, my skin will become calmer on its own - time being the key word.

I'm wondering if I should start carrying around little cheat-sheets with a bulleted summary of this problem, for the people who ask, "What happened to your skin? Psoriasis? Have you tried xx?"... 

To sum up the last month on the health front: Trying to treat an autoimmune condition is definitely a catch-22. As with viral or bacterial infections, or cancer, you have to kill some of the good stuff to wipe out the bad.

So I started the injections of Humira (a biologic immunosuppresant used to treat psoriasis and other inflammatory diseases). Unfortunately for me, my roommate's high school (she's a teacher) shared the latest cold with our household, right about the time I did the first injection. I didn't know a virus was coming my way (if I had, I certainly would've kept that needle in the fridge a little longer!). The first rule of Humira is Do Not Take it When You Are Sick or Getting Sick. Oops. Gretchen and Greg were fine within a few days; I wasn't back on the bike until three weeks later, having missed a fitness trainer seminar, a CPR class, a family visit to Arizona, and that much triathlon training. Well, I knew going into all of this that nothing is guaranteed. But, no matter how much I try to think Zen-like, I don't like missing fun or important things I've planned. Still, I take a rest, and then try again.

Also, a word of pharmaceutical advice: Don't let any doctor tell you that psychiatric medications have no withdrawal symptoms. Some of them will try to tell you that it's no big deal going on or off an anti-depressant or anti-anxiety med. Ha! Certainly, it depends on how sensitive your system is; and it's a given that most doctors won't even approach understanding of how it feels to be an athlete, and request a certain amount from your body.

Cymbalta (an anti-anxiety and -depression agent) was my previous experiment in the long line of attempted psoriasis treatments. It has been known to improve psoriasis, and most notably, relieve some of the itching. It did reduce the itching a little for awhile, but that was all; and the myriad of side effects wasn't cool with me. (High heart rate and low blood pressure don't mesh well with running or riding your bike! Plus, it made me bloated, foggy-brained, and inarticulate. I did sleep well, and sure, I didn't feel anxious - but my stress level has gone down like 90% since I quit my tech writing job anyway.)

So, cool, I'll just stop taking the Cymbalta (tapering appropriately, of course), and feel better. Wrong! With the Cymbalta withdrawal came continued bloating, and hello, depression, hormone weirdness and cognitive confusion. Talk about rebound effects! For a few days, I could barely keep anything in my short-term memory. It still looks like I'm pregnant (which would be neat if it were true, but that's just water retention). Don't worry, it's all coming back... but wow. I write this because it made me feel better to read message board posts and blog entries by other people going through the same thing. I know that in time I'll feel more like myself again. I'll post again as it happens, so any of you fellow med-survivors out there can take heart too.

Meanwhile, I've somehow managed to study and learn quite a bit in the last couple of months (not on the bad days, of course - but on just enough days) -- my Certified Personal Trainer exam is coming up soon.

...And finally, after years of working through techno-speak and translating it for the software consumer, I feel like I'm being watered with creativity like a thirsty plant. I'm actually having a really good time with a few fun, creative projects on the side...mostly entering writing, recipe and photo contests. Here's the latest mini-project (with my sister Lori and my husband Greg) - the theme is, Why do you need to win this Mustang from Valvoline? (Since we're really wanting to keep our house in Carlsbad, a new car for Greg isn't in the budget...but there's no rule stating we can't try to win one. :> ) Another contest my sister and I entered awarded $25,000 to the maker of a winning sandwich recipe, and some second prizes too. Two of our recipes were startlingly similar to the winners' - kinda encouraging!  

More important than any of this, really, is the alarming importance of the upcoming election. Without waxing too political in this particular forum, May the best candidate win!

"Not quite the Mustang she was expecting..." (The amount we laughed made our effort so worthwhile...)

...So the psoriasis problem (or is that Psoriasis Problem?) is top-o'-mind lately, which incidentally doesn't make for a "top-o-the-mornin'." As the skin symptoms look and feel progressively worse, one of the brain games I play is good old detachment - just go about my usual business, and attempt to focus on other things - just about anything else will do.

The difficulty arises in being the object of others' attention. I don't mean to sound egocentric here, but when someone has a visible "problem," especially one that's a little unusual, unidentifiable immediately, or seems incongruous with the rest of the person, people are going to look. I'm sure I do it too - it's an involuntary thing, part of the human curiosity/compassion complex. But, just when I've shifted into whatever I'm doing and am happy with that mental place, one of these looks jolts me out of my momentary peace. Particularly frequent are looks from other women, whose widened eyes and horrified expressions blurt, "What happened to her LEGS? Oh my god, could that happnen to me??"

So yesterday I was suiting up at the pool, applying sunblock quickly so as to focus minimal brain-time on the skin itself, when a mom and her two young children walked in. The girl, about four, was being whiny and generally difficult, and the mom was making pathetically incompetent attempts to quiet her and get her ready to swim. Suddenly the kid pointed at me and hollered, "Mommy, she has spots!" Mom whisked her around and tried to pretend like nothing had happened. "Mommy, she has spots!" the girl yelled again. This time Mom tried to segue clumsily into a commentary on her daughter's own skin.

Pop! There went my tenuous bubble of detachedness.

I turned toward Mom and said, "I'd be happy to explain to her, if you think she'd understand." It doesn't actually bother me when kids ask about my skin, because they just want to know. In fact, I prefer to give straight, simple answers to curious tykes - all the better to educate, and take away any fear. I usually say something like, "Yes, it's a skin condition called 'psoriasis,' and I treat it with this lotion. It's not contagious - you inherit it from your parents."

It does bug me, however, when adults are just plain lame about the whole thing. In this case, Mom just looked flustered and essentially ignored me, continuing to prep the girl. I know, she just didn't know what to say or do...but I'm sorry, that's silly and unproductive. I'm clearly not scary-looking generally; I'm just an otherwise-fit-looking, 30-something triathlete going for a swim. If I'm obviously fine talking about it, why not let the education happen?

Everyone has a challenge, right?

I'm somewhat embarrassed to admit (having been TV-abstinent for years prior) -- lately Greg and I have been hooked on "House M.D.," the Fox medical drama about a painfully sardonic diagnostician. For Dr. House, the most fascinating puzzle is the one he can't solve, or can't solve easily.

Psoriasis is that puzzle for me, though I'd gladly do without this particularly paradoxical fascination. I've made it through numerous other challenges and found light at the end of many a dark tunnel; but this one remains the bane of my existence. Psoriasis is a genetic condition that most commonly looks like a skin disorder (red, flaky lesions on the skin), but is actually a dysfunction of the immune system. Quick tech synopsis from The National Psoriasis Foundation:

Under normal conditions, TNF-alpha (tumor necrosis factor-alpha) helps fight infections and communicates messages between cells. In people with psoriasis and psoriatic arthritis, TNF-alpha is produced in excess amounts by activated T cells. The messages communicated by TNF-alpha can lead to the rapid growth of skin cells found in psoriasis, or to the joint pain, stiffness and other symptoms associated with psoriatic arthritis.

Anything that activates the immune system (an impending infection, stress, extreme weather, lack of sleep, lack of or highly intense exercise, caffeine, alchohol, doughnuts, life in general) means a breakout of nasty lesions on the skin. The T cell hyperactivity that causes it can, in turn, drain your energy and steal resources from the immune system's regular activity. This means, doing something that's supposedly GOOD FOR ME can actually cause my skin to break out further! For example, eating certain vegetables or strawberries, taking vitamin C, or taking herbs meant to bolster the immune system leave me crazy with itchy redness.

I am a Half Ironman triathlete with the most balanced, nutritious diet of anyone I know. I make sleep the utmost priority. Almost every day, someone stares at my legs and/or asks, "What happened?" I think it doesn't compute that I could look as fit as I might, but have angry red lesions all over my limbs. Most people used to assume I'd just been trail running (which is true, but I'm not bushwacking that much!). However, in the last year the problem has exploded exponentially, I suspect due to GI troubles brought on by international travel.

(On the itch associated with psoriasis: It's not a "regular" itch, or even an intense one like a mosquito bite or chicken pox. It's an insidious, under-the-skin itch THAT YOU CAN'T SCRATCH, that actually feels like your bloodstream is carrying little Itchy Monsters throughout your system, and they're erupting at the surface. A couple of times I've ceased treatment, only to become unable to sleep because the itch was so mind-bogglingly intense.)

Here's the catch: There are no good treatments. Kind of like with ALS, cancer, and innumerable other conditions we wish were fixable by now, there's no cure.

For some people, simply cleaning up the nutrition, starting an exercise program, getting a lower-stress job...can kill the symptoms. Obviously, I don't need to exercise more.

A partial list of treatments I've tried over the last eight years: Herbs (at least 20 different combinations of recommended treatments), acupuncture, meditation/yoga, about 200 different topical ointments/creams/lotions, topical steroids, at least 25 different dietary modifications/eliminations, sunlight/UV light, pharmaceutical-grade fish oils, herbal oils, fumaric acid, hypnosis, at least 10 different supplements that are supposed to "re-balance" the immune system (such as Microhydrin), topical retin-A, Dovonex, an ayurvedic treatment package purchased over the internet from India, probiotics, anti-depressant and anti-anxiety medications, anti-histamines, anti-inflammatories, anti-biotics, anti-EVERYTHING, doing nothing in particular (didn't work). The list goes on.

You're not supposed to use topical steroids for more than a couple years, because they thin the skin and cause additional sun damage. I've been using them on and off for eight, and the damage has been a nuisance in itself. On a recent warm-water surfing stint, the friction of the surfboard leash against my leg (which normally would cause minor leash burn) ripped most of the skin off my lower leg. I patched it up with bandages and Tegaderm, stuck a double layer of hiking socks with the foot cut off over the leg, and kept surfing.

The only things that have made a visible difference have been: one particular anti-anxiety med (which had intolerable side effects), and being on vacation from work. Hmm, is there a message here? Wouldn't we all love to reduce our stress only to the chosen stresses we put on ourselves??

I'm currently on a gluten-free diet, and am focusing on re-balancing digestion. Doesn't happiness come from the stomach? :>

The only thing I haven't tried is a biologic drug. It's sitting in my fridge, waiting for me to inject it to my thigh.