Wednesday, 24th of February 2010 at 02:23:25 AM OR, Some True Things, Some Gross Things, and the Heartbreak of Psoriasis.
Not a photo of psoriasis. That would be vulgar.
This post isn’t about diet. It’s only tangentially about exercise, but it IS about health! And a terrible secret.
Five years ago, spots, each the size of a pea, appeared at the center of the palms of my hands. The skin there was raised and red and crackly. It split open at any movement and I bled frequently (gruesome, ain’t it?) They hurt like a thousand cuts. It was the Lenten season, so, since despite my earnest piety I’m a smartass at heart, I held my hands before my husband and said, “LOOK! STIGMATA! LOL.” As months passed the spots got bigger and more painful, the stigmata spread across my palms and appeared on my fingers. I was always Band-Aided half to death, and learned a peculiar way of using my hands so that no one saw the palms, useful when serving communion.
There came the tipping point when I realized I wasn’t even WRITING because my hands hurt, much less taking care of the mundane chores of life like laundry and cooking and dishes and stuff. I went to my doctor who sent me to a dermatologist who diagnosed me with psoriasis.
He gave me a prescription for a cream and said “see me in three months.” We did that exact pas de deux for more than a year. I’d come back after three months, show him my hands, and he’d prescribe something else, and off I’d go.
Then it began on my feet, exactly as it had on my hands. The difference? I was a runner, and over the course of a year, I wasn’t able to take a step without misery. “OMG I’M THE LITTLE MERMAID, LOL!” But the funny was wearing thin.
The dermatologist sent me to a psoriasis specialist who started me on light treatments (you put your offending parts into a special light box for feet and wear special glasses and then your feet get an exposure of UVA light which helps psoriasis.) It helped marginally for a few months, then I inexplicably began to burn, even when they dialed the machine way back down to my original dose. This, I was told, can happen to some patients. BOO.
Then came months and months of the same treatment dance with the psoriasis dermatologist. I put the worst crap in my body, you have no idea. Methotrexate, which made me too sick to get out of bed for four days each week, Cyclosporine which did something bad I can’t recall, I think something found in my bi-monthly bloodwork. Some other pills. Weird, stinky creams, steroid ointments with vitamin D, etc. I faithfully used them all, I was the most compliant patient EVER. Meanwhile, I gained 60 lbs. over those three years of messing around with my palmar-plantar psoriasis.
Oh Raptiva! YOU ARE A FALSE GOD!
And then came Raptiva. Sure, it was expensive and the insurance gods looked down and said, “LO, THIS COSTS TOO MUCH, NO WAI LOL.” And my doctor was all, “DUDES SHE RILLY NEEDS IT, SRSLY.” And they said, “WE SAY UNTO THEE, well, ok.”
I shot that stuff up for, I dunno, over a year and it was awesome. The first couple of shots were not so great, because they made me sick. I had a fever and the chills and a terrible headache and all. I was diagnosed with diabetes soon after the Raptiva shots started (not related, I was told,) but I got the blood sugar under control and by then I could WALK, and OMG I was healed!
I started working out and then runnning and in exactly one year after starting Raptiva I’d lost 50 lbs.
Soon however, there came disturbing reports of Raptiva patients contracting deadly brain infections. I hate it when that happens. My beloved Raptiva, my savior and my bane, was removed from the market last summer and I was orphaned. And the stigmata returned. In the months since I’ve slowly lost hand and foot function. And gained weight.
Humira, my last hope, doesn’t work.
Look out psoriasis. Stelara is coming for YOU! Or is she...?
BUT WAIT! A new drug! Stelara! She rides to my rescue! OH NOES, the insurance demons are laying traps in her path. HOW WILL IT END???
Some Psoriasis Facts:
1. Psoriasis is thought to be an autoimmune disease of the skin. It isn’t contagious. It’s like, say, lupus.
2. Caring for psoriasis is a part-time job filled with hours of boring routine and sticky messes.
3. About 2.2 percent of Americans have psoriasis. Which means that even if you cant see it hiding under their clothes, you know people with it.
4. My type of psoriasis is very rare because I like to be special.
5. My life with psoriasis gets very small when I can’t walk or do things. I worry that people who see my hands will judge me, think I have leprosy, and feel justified in their belief that God likes them more.
6. Diabetics don’t like leaving bloody footprints on the bathroom floor. In addition to the pain, it makes them entertain thoughts of infections and amputation.
7. Psoriasis is statistically linked to heart disease, diabetes (!) and other really crappy health problems.
So now you know what I didn’t tell you before about the stigmata and why it might make it more of a challenge to lose weight and work out and get fit and all that. I really believed in my heart that Humira would would be like Raptiva and I’d be pounding out my road work every day well before January first. I was sure that I’d TOTALLY drop 20 lbs in ten weeks and I’d just flip my hair and casually tell you how easy it was. Joke is on me, heh.
You have every right to feel discouraged and yet you still seem to maintain a fantastic sense of humor over this as well as a great deal of hope. Thanks for sharing. And thanks for putting my weight loss challenges in perspective.
I merely lack a little thing I like to call…self-control. And I love food. So…yeah, not the same. Shame on me.
NO! NOT shame on you. Food is a terrible taskmistress. You can’t say, like you might with cigarettes, “I ABJURE THEE!” and never ever touch them again. I mean, you kinda NEED food. It’s the hardest thing of all to master, imo.
I’m so sorry, sweetie. It’s No Fair, with capital letters. What does your doc say at this point? Is there any possible help on the horizon?
Wow. Way to turn your misery into entertainment. SRSLY. If I had to deal with something like that, I’d be all whimpy and bitter and not the least bit entertaining. I hope Stelara works for you!
I get floppy and all PITTEH MEH and stuff. I show my hands to my husband as the blood wells up and wail, “OMG IT’S BLEEDING!” I think he really likes it when I do that, don’t you?
Holy shit, Gray. That doth righteously suck. Shouldn’t the manifestation of stigmata at LEAST come with some preferential treatment from God or something? I really hope you and your doctor get this figured out soon. I love that you can make all of this — which must be just miserable for you — such an entertaining read for us.
I KNOW, RIGHT? I think a faint halo would look nice, or a winning lottery ticket. I could use one of those. Then I could buy my OWN damned Stelara.
You just spoke on behalf of who-knows-how-many people and taught me some things I didn’t know. I am glad you said something and hope that you and your doctor are able to open the path to Stelara.
I agree with Aimee. Holy shit!
Hope is a wonderful thing and it sounds like you are holding on tight!
Carry on.
I have psoriasis too but mine is mostly scalp at this point. All I ever hear from doctors is “You aren’t that bad. Here’s some cream. Quit yer bellyaching.” Or something like that. Good luck with the new meds.
Oh you have my deepest and most sincere sympathy. I read the National Psoriasis Foundation Boards ( http://talkpsoriasis.org/ ) and they are helpful and encouraging. I recommend them for fellow sufferers.
@Mir
Yeah, the new drug she needs? Is expensive. SO the insurance co keeps “losing her paperwork” and stuff. HEH. Even though she followed their protocol and tried everything they said to try first, including the nonsensical things. TIME TO PONY UP U MONEY GRUBBING CORPORATE BASTAGES.
@Gray, re: insurance companies. I used to work for one. What you need to do is make yourself (if you haven’t already) a ROYAL pain in the butt for them. Don’t be afraid to escalate over someone’s head. I used to work in insurance (no longer, thank goodness) and I know how their evilness works. It’s not a guarantee, of course, but oftentimes if you really make them want to get rid of you and make it clear that the only way they will be able to do it is by submitting to your mighty will, they will pony up. Good luck!
Thanks Aimiee, I’ll need it. I had to raise holy hell when I had cancer and wanted a specific reconstructive surgery (mandated by law that be it covered.)
I’m still hoping that they’ll give in without too much of a fight, but since the cost of each injection is around TEN THOUSAND DOLLARS and I’ll get five injections the first year, I can hardly blame them for making me jump through a few hoops, just to see if I really really want it.
Maybe your preferential treatment from God could take the shape of, say, a plague of locusts upon the insurance company that will abate ONLY when they agree to pay for your treatment?
Man, that sucks. You poor thing. I’m really impressed that you’ve had the guts to try for stuff like losing weight instead of just curling into a little ball.
Get on the phone to your insurance company every couple of days for “progress reports”!
I am deeply southern, so to you I say, “Bless your heart.” And I also say. . .ouch. I know of the diabetic fears of which you speak. . .grew up with a Nanny, a cousin, an aunt, and a Daddy all diabetic and in fear of the open wound. You do, however, tell a great story. Sorry it has to be such a painful one. Here is a tender pat on the BACK of your hand.
Wow…that really sucks. Now I feel like an asshole for complaining about my calf. But it CRAMPS UP, see? And…
Yeah, I’m an asshole.
Here’s hoping the insurance company comes through. SOON.
Gray, I usually lurk and marvel at y’alls dedication to this.
A suggestion–have you tried acupuncture for your psoriasis? DH is a L.Ac. here in Ohio; while he has not treated a psoriasis patient, he has had great treatment results with many of his patients with other auto-immune diseases. he is able to reduce symptoms and help control the outbreaks. Since allopathic/western pharmaceuticals are not working for you, it might be worth a try.
Check the national licensing org http://www.nccaom.org; they have list of practitioners by state. Good luck–I hope you can get some relief…
Phyllis
It sounds just awful, and like the worst possible pain in the ass, but I just loved your illustrations! HAHAHA!
I have psoriasis too, and have been on just about everything you’ve tried at one point or another (have had similar issues with phototherapy and Humira, too; the methotrextate didn’t bother me much, but after 5 years the protocol was that I had to have a liver biopsy and then I was like, okay, that was not fun, let’s try something else now because I never want to have one of these ever again.)
Haven’t been on Stelara yet, because I am still on the one thing that has worked for me consistently, which is Enbrel. Similarly expensive, but it’s been around longer so there are more long-term studies. I’m wondering if your doctor ever proposed it as an alternative to Humira, or if it was similarly stymied by the insurance powers that be.
Hope this is not too assvice-esque; if you’ve explored everything else, there’s probably a good reason that Enbrel isn’t mentioned in this post. I thought I’d mention it, though, just in case.
Not at all advice-y! I never get to talk about this to other p-patients, so I love your comment.
My doctor didn’t think that Enbrel was for me; it doesn’t have a good track record of successful treatment of palmar/plantar plaque psoriasis in his practice. (He actually didn’t have much expectation that Humira would help, either.)
DID YOU KNOW that some researchers have suggested that ppp ought to be a different disease as it rarely responds to the treatments that help patients with “regular” psoriasis?
AND! I got a call from the nurse yesterday and my authorization for Stelara was approved. She told me to expect a call as soon as it arrives in their office. YAY! I may shop for new running shoes next week. (Hope springs eternal.)
Watch this space. I’ll be updating my Stelara experience as it unfolds.
Whee! Congratulations! Also, I didn’t know that about ppp, but it makes sense.
I will watch this space for sure and will be very interested to hear how the Stelara goes.