Read this if you have eczema

[metaphortunate]

Read this before the end of the year if you have eczema.

See, I've been to dermatologists about eczema about half a million times, & they all:

• got that sympathy grimace of "this ain't gonna do shit"
• advised me to wear gloves while doing the dishes
• prescribed me a few things that, as advertised by their facial expressions, didn't do shit. Maybe made it itch a little less but hurt a little more, kind of a pointless annoyance of a tradeoff.

But you get desperate, so I tried, once again, a new doc. And she looked at my current medications, and told me these things:

1. The advice to never touch water is deprecated. The kind of eczema I have is a birth defect where my skin loses water like a sieve, which is why it's so dry and itchy. And I can bathe in Aquaphor like I do, but it won't help unless there's moisture in the skin to keep in. So it's fine to get the skin wet, just cover self in a thick layer of petroleum jelly afterwards.
   
2. Which explains why I had through trial and error found that first a layer of some moisturizer and then a layer of Aquaphor was doing the most good.
   
3. Sanding between coats is not necessary.
   
4. And in fact, per the doc, I should go back to being the one to wash the kids. And furthermore, I should put a tablespoon of bleach in the bathwater. Yes, some people get to bathe with bubbles, some people get to bathe with fancy glitter from Lush, but my kids get to bathe with bleach; because, and for some reason this is not something that had really occurred to me before, when you go around all the time with bleeding cracks and raw patches in your skin, it increases your vulnerability to infection! So bleach in the bathwater helps fight that.
   
5. One of my old prescriptions was Protopic (tacrolimus ointment.) According to this new doc, sometimes that works! But it can also irritate the skin. So! Less itching, more pain, pointless annoyance of a tradeoff.
   
6. The other one was generic fluocinonide ointment. And supposedly the name brand (Lidex) is pretty good. But I had the generic. And according to this doc, the difference between the name brand and the generic is the penetration enhancers, which I realize sounds like lube, but actually is the so-called inactive ingredients which allow the active ingredient in the meds to get absorbed through the outer skin layers to where it can do some good. So apparently, the name brand manufacturers put money into developing penetration enhancers that are effective and non-irritating. But the generic manufacturers just stick some propylene glycol in there. And propylene glycol, she said, works by eating holes in your skin that the active ingredient can go through. Which, when your skin is already all fucked up and irritated and hypersensitive, has exactly the effect that you would expect.
7. Less itching. More pain.
   
8. So instead, she gave me a sample of a new drug called Neo-Synalar. It's a steroid and and an antibiotic. Here's the thing:
   IT'S WORKING.
   Months of torment and this shit cleared me up 97% in a matter of two days. If you have eczema, and you haven't tried this yet, you need to look into it. And you need to do it now, because the other thing is that Neo-Synalar is holy fuckballs supercalifragilisticexpialexpensive. Like, one 60 gram tube costs about $440. But I got it for FREE, because Medimetriks Pharmaceuticals is giving out a $0 Copay Discount Card and my doctor gave me one. But it's only good through 12/31. So if you might need this, look into it now. See if your doc has one. And if you can't get the card, get the $0 Copay Rebate at the manufacturer's website.
   
   Good luck, and try not to claw your skin off in your sleep. Cotton gloves do help.

Comments

[wordweaverlynn]

Thank you!!! (And thanks to wild_irises for alerting me to the post.)

[brooksmoses]

May I ask who your new doc is? I have had something on my fingertips that is not quite typical eczema and not quite unlike it (a web search suggests it's pompholyx, maybe?) and is not going away, and so the idea of going to a doc who actually Knows Things like this one does seems like a very useful one.

[lilysea]

Do you have any tips for vulval eczema?

I've been working with a dermatologist on it for months and no real progress.

[metaphortunate]

You were the one who told me about sleeping in cotton gloves! Thanks.

[metaphortunate]

Oh my god, that sounds horrible. I am so sorry, I don't have any knowledge about that; I have escaped it so far. :/

[cme]

Sweet everloving baby jesus on a cracker, I knew you had eczema, but I had NO IDEA it was like this.

(I have had it too and it has not been NEARLY SO BAD. The stuff the doctors have given me has worked (and then the pharmacist scares the pants off me about using it too much and I disobey the doctor's orders because I feel like an EVIL DRUG SEEKER but that is another rant).)

But god, dermatologists are a crapshoot, aren't they? The first one I ever went to was one of the most amazing medical dicks I have ever met (and I have seen some shit), and he looked me over like a piece of rotting meat (when he could bear to look at my fat ass). I have finally found one who treats me like a person and who recognizes that I present with All Of The Weird Shit and she is a large part of the reason I have not moved away from Seattle yet, no lie. (Her name available on request to anyone who wants it, she is the sweetest most brilliant person).

[lilysea]

It really is horrible. At its worst, I couldn't sit down for more than 10 minutes without pain (especially problematic when you are a wheelchair user who needs to sit down to leave the house), and I spent 3-4 days lying on my stomach with an icepack on my vulva.

Currently my dermatologist has me on Silic 15 Cream as a moisturiser/barrier, plus Advantan fatty ointment (steroid), but progress is teeth-gnashingly slow.
(I've had it since May of this year, without a remission.)

What makes it worse is that I can't tolerate many steroid creams on my vulva - they contain preservatives which are irritants.