Would You Rather..?
Editor’s note: I don’t typically write about personal health and wellness issues, but since some recent developments have hit my pocketbook rather hard, I feel compelled to share.
Lately I feel like I’ve been playing a version of “Would You Rather…?”
Would you rather be thin or bald?
Would you rather be fat or covered in scales?
Would you rather risk cancer or look like a leper?
You see, I have psoriasis. It first appeared when I was 21 and has been mild to moderate ever since. While my symptoms have never been quite as severe as the model in the Wikipedia link, it is getting progressively worse. It’s mostly on my extremities - hands, arms, legs, and scalp. The scalp part is the worst - it causes my hair to fall out in chunks and creates terrible dandruff. It’s embarrassing - and the treatments aren’t much better - the most basic (and least harmful) are greasy or tar-based (or both!), and the most effective are extremely expensive and loaded with steroids (which cause weight gain).
Last winter, I responded rather well to UVB treatment, but as soon as I stopped the therapy, the blotchy spots came back with a vengeance. In May, I contacted my dermatologist in a panic - my symptoms were worsening with the wedding less than six months away. This time he prescribed a light box for my home (for UVB treatment), and an injectable TNF blocker (Enbrel).
Combined these treatments should eradicate my problem completely, but at quite a cost. The light box runs about $6000 (my out-of-pocket expense is $1200), and the Enbrel injections go for $1200 per month ($240 out of pocket - every month).
And those are just the monetary expenses. Both of these treatments also have their health risks. The UVB rays can cause skin cancer, and the Enbrel has a host of side effects (including MS and lymphoma).
I’ve tried controlling my psoriasis through diet and exercise. I’ve tried homeopathic treatments and home remedies. I’ve tried acupuncture and meditation. I’ve tried everything short of traveling to Turkey and having my psoriasis eaten off by “doctor” fish.
Eww.
Psoriasis treatments are expensive because they are considered vanity therapies, which is ironic because most cause extreme weight gain. I can function normally with plaques covering my hands and head - it isn’t pretty to look at, but it’s really not a disability. The troubling thing is, I can’t measure what opportunities I may miss out on due to my physical appearance. Plus, it’s difficult to feel professional and polished when one’s skin is falling off in flakes.
Would you rather be fat or covered in plaques? Which is worse for a career? Which is worse for longevity?
Stumble it!
June 16th, 2008 at 9:12 pm
That definitely sucks. You’re in a tough situation, no ways about it. I’m curious about the light box. Have you noticed any difference in your moods? (Or am I crazy for thinking I’ve heard that somewhere?)
June 17th, 2008 at 8:24 am
A former colleague has psoriasis so I know how difficult it can be and I’m so sorry you have to deal with this. I just wanted to let you know that he had the best success with a very stringent diet - he went to some kind of naturopathic doctor, who told him to stop eating refined sugar, wheat (gluten), and probably some other things as well. He’d come to work with brown rice bread from Trader Joe’s, which I couldn’t stand but he was okay with it b/c it really did help his psoriasis. He’s gay and said that his friends thought he had AIDS b/c the psoriasis and treatments made him look awful. He lost weight on the new diet, but he looked and felt better. Maybe it’s something to think about? In any event, I wish you all the luck treating this!
June 17th, 2008 at 3:40 pm
I have psoriasis too and keep my eyes open for blogs and posts on the topic. Do consider the diet considerations for your psoriasis while you are working on treating it. There is a psoriasis diet meal plan that I found at www.DermaHarmony.com. I really think it has helped me - but you need to stick to it! Check out some of their other products. I use them but I know that every body’s body can be different! Good luck.
June 17th, 2008 at 8:56 pm
@Sara - I didn’t really notice a change in my moods when I was traveling to my dermatologist’s office for therapy, but I’ll let you know if I can find any link once i have a lightbox at home.
@CFO and LindaF - thanks for the diet tips. I have tried to give up all processed flour and sugar in the past, but usually only make it a week or so before I am at a social event and eat something I shouldn’t (or have a glass of wine). The fact that I can’t go very long without cheating makes it difficult to gauge the success of the restricted diet. I should give it another go - it may help me lose more weight before the wedding.
June 18th, 2008 at 7:03 am
If it were only a matter of cost (the light box out of pocket plus the $240 a month), i would definitely have said you should do it. In the grand scheme of things, it could be a lot worse, money-wise. Health care costs are thru the roof, but your health is more important, hands down, not to mention self-esteem and confidence which you can’t put a value on.
but then you mentioned a higher risk of skin cancer, which is troubling. I would try to do more research on that (if you haven’t already) so that you can make an informed decision.
Also, i’m not sure what you meant by saying one “side effect” of Enbrel is MS. I have had MS for 22 years and i can tell you that MS is not caused as a “side effect” of anything. In fact, its true cause is still unknown, but it does have a genetic component (meaning, it tends to run in families) and is most likely triggered by a virus. (For instance, there’s a higher incidence of MS among people who had mononucleosis.) But no drug can cause MS.
I suffered from moderate acne for most of my life, from my teens right into my 40s and i feel it had a real impact on my confidence level. I would continue to pursue various remedies (watch out for quack, unproven treatments, though) either using the light box and Enbrel or the diet.
Good luck
June 18th, 2008 at 12:25 pm
I keep coming back to this post trying to think of what to say. My mom is on Enbrel for her psoriasis. I have a touch of it as well but haven’t gone on any medications or light therapy. I stay away from all fours, breads, pastas. My diet is pretty strict. It’s not fun, I agree. But I would rather not risk cancers in the future to be psoriasis free today. Perhaps be brutally honest about your diet. It won’t cure it, but I found cleaning out certain foods did help. HUGS.
June 18th, 2008 at 12:34 pm
Fern–did your acne finally just go away or did you get a certain kind of treatment that finally cured it? I’m curious–I’m 32 and I still have moderate acne (even after a course of Accutane several years ago) and very oily skin.
Banker Girl, keep us posted on how the diet tips work for your psoraisis. It sounds like the best option right now.
June 18th, 2008 at 12:58 pm
Gosh, I don’t know. On the one hand, it seems like anything and everything is causing cancer nowadays. So I’d wonder how much worse it’d make my odds.
I’m sorry, though. I’ve suffered from mild to moderate to mild to moderate acne at various points in the last 10 years. I don’t know what I’d do in that situation. AS it is, I haven’t found anything that works well.
June 19th, 2008 at 7:08 am
Hi, Bonnie. I, too, tried one course of Accutane in my 30s, which helped only a little. I regret having used it today; it’s a very powerful drug. I do believe that the Accutane is the reason why i can no longer wear contact lensses. It dried out my eyes. (I know it sounds like a strange connection, but if you read all the fine print and warnings for Accutane, it will mention that after using it you may no longer be able to wear contact lenses.)
The acne has very gradually lessened; it’s not really a problem now, at 48, but it was as i recall, into my early 40s.
Look on the bright side…those with more oily skin get less wrinkles!
June 19th, 2008 at 7:11 am
And i just wanted to add a PS…Mrs. Micah seemed to have a somewhat blase attitude that “everything” seems to cause cancer these days, but i wouldn’t take that lightly. We live in a toxic world. You shouldn’t live in a paranoid way, but taking reasonable precautions whenever possible, in light of available information, seems like a prudent thing to do.
June 19th, 2008 at 7:26 am
@Fern I didn’t mean to make light of MS as a “side effect” - here is the language from the enbrel site:
“Serious nervous system disorders, such as multiple sclerosis, seizures, or inflammation of the nerves of the eyes have been reported. There have been rare reports of serious blood disorders (some fatal).
In medical studies, more cases of lymphoma (a type of cancer) were seen in patients taking TNF blockers compared to similar patients who were not taking TNF blockers. The risk of lymphoma may be several-fold higher in people with rheumatoid arthritis and psoriasis; the role of TNF blockers in the development of malignancies is unknown.”
I find that language pretty scary - my dermatologist has stressed that he wants me off the injections as soon as I’m clear (he thinks we can manage this with UVB once my skin is healthy). And I worry about the possiblity of birth defects if I choose to get pregenant years from now.
Thanks for the discussion and the support. I’m going to take the diet advice seriously and focus on eating clean, whole foods.
June 20th, 2008 at 11:30 am
Thanks, Fern. Accutane worked a miracle for me–but ONLY while I was on it. As soon as I stopped taking it, my skin reacted violently and the subsequent breakouts were the worst I had ever seen on my face. I’m sorry about what happened with your contact lens-wearing. It is a very powerful drug–I agree. I’ve noticed that even small cuts and even sometimes mosquito bites take months and months to fade/heal on my skin now, which never was the case pre-Accutane. Anyway, I’m glad that your acne finally went away. And you’re right about the fewer wrinkles/oily skin.
At least we’ll have a payoff for suffering through the acne.
June 20th, 2008 at 7:18 pm
I have horrible skin problems — I have severe allergies that show up as a horribly itchy rash, sometimes oozy and often so itchy I can’t sleep. I know what you’re going through. I actually was so bad that I quit work because the lack of sleep made working impossible. I have had success with NAET treatment and it theoretically can help psoriasis as well. The docs that perform them are usually chiropractors so insurance may or may not cover it. My doctor does not take insurance but I can bill myself. He charges $45 a treatment.
August 30th, 2008 at 8:45 pm
I too suffer from psoriasis — first diagnosed at age 10. I have used the steroid creams, uv rays but stopped at enbrel. Crazy as it sounds, I find relief from ponds/oceans/pools. I usually apply alpha-keri oil (when I’m still wet) after a shower then pat dry. This helps on my body. The psoriasis on my scalp has only ever been relieved when I shaved my head. If you find something for that, I’d love to hear about it.
I try to be satisfied when it is in “ok” places and not especially flared.