Eczema Info and Rant

Today I had a pretty meh morning due to a wonderful thing called eczema. After going to bed at 4 am last night I had very bad itchy eczema to the point where I couldn’t sleep. So I got up again at 6 am and surfed / watched West Wing until 9.30 am when my skin calmed down, then hit the hay again until 3.30 pm. Not a great start to what I had hoped would be a productive day. I had a shower and took some prednisone, which should calm down this outbreak and give me a break.

I have several separate areas where I get eczema:

  • Shins
  • Back of knees
  • Groin (in pubic hair)
  • Back
  • Front of torso
  • Shoulders
  • Arms
  • Back of hands
  • Front of neck
  • Under eyes
  • Scalp

Overnight pretty much everywhere but my scalp and under my eyes broke out heavily due to itching and subsequent scratching. It was pretty bad (but still not this bad – thank god!). Moisturiser, betnovate and prednisone has calmed most everywhere down, except the back of my hands and my neck still feel pretty vulnerable.

Treatment

My treatment regime consists of steroids, emulsifying cream, prednisone and physical anti-itching measures. I have a small pharmacy worth of various topical steroids which I try not to overuse because they gradually destroy your skin.

The key in the never-ending battle is an industrial-strength moisturiser called emulsifying cream – essentially paraffin wax – which I put on 2-3 times a day. It comes in huge 500g tubs, which I am supposed to use up in as little as a week. They usually last me 2. While it is an amazing moisturiser, and can by itself calm down eczema, particularly if I put it on straight after scratching, there are two main problems with emulsifying cream: First, remember this is a thick layer of waxy ointment on my body, this is an excellent insulator and blocks my pores, so whenever I work up even a light sweat within 2 hours of putting it on, I get very hot and itchy – perfect conditions for making eczema worse rather than better. The second problem is that the stuff is just disgusting. It doesn’t soak into skin at all, so it coats my clothes in places. My dressing gown, for example, gradually gets soaked in it and begins to feel permanently heavy, wet and clammy. Gross. It also looks and feels greasy, and I regularly have to wipe the stuff off my face and neck so my girlfriend doesn’t end up with her own covering of grease.

Occasionally I get to use prednisone. Prednisone is, quite frankly, magic. It immediately makes eczema retreat and keeps it there for typically a week. Its a great relief and very helpful when my eczema gets really bad, but (of course, rolls eyes) it can’t be used long-term because this would essentially destroy my immune system.

I have a really weird system to stop myself scratching in my sleep, because this is key to preventing outbreaks.  I wear cotton gloves covered by soft socks, and the socks are secured with lace-up leather restraints (similar to bondage restraint, and yes I know how dodgy and strange this sounds!).  Sometimes I clip the restraints onto my pyjamas.  It is difficult to describe, but doing up and undoing the restraints is entirely possible using my socked-over hands (and teeth).  This system works fairly well unless I go to sleep forgetting to put the restraints on (this usually happens when my girlfriend stays over).  Unfortunately, in some really bad itchy conditions, I will (often half-asleep) take the restraints off and scratch anyway.  Recently the socks that I use pilled up due to constant use, this makes them rough and scratchy, ie, useless for an anti-scratch device.  The restraints are entirely my own invention and I have considered making and selling them for other sufferers.

Showers

Having showers is irritating. I haven’t yet found a balance between avoiding showers because they can make my skin hot and itchy and consequently set off my eczema, and having showers, because if I miss too many (4-5+) my accumulated sweat, grime and eczema ointment itself makes my skin hot and itchy and sets off the eczema. Also, skipping showers tempts me to skip or skimp on my super-ultra moisturiser, whereas if I do shower I always put it on.

Shaving

To complicate things further, shaving is very painful on my neck-eczema, but not shaving leads to stubble which for some reason makes the neck-eczema much worse. I am trying to get into a routine of showering every second day, blade-shaving in the shower and electric-razor shaving on the off days. But then again, my life doesn’t have much of a routine at all right now.

Summary

Eczema sucks. Looking in from the outside, it might not seem like such a big deal, especially in light of my eyesight or asthma problems. The thing is, it never really goes away or takes a day off. It’s painful – sometimes extremely so – and disfiguring to the point of embarrassment. (Skipping showers also makes me a bit stinky, which is additionally embarrassing). It is also unpredictable. I can have 3-4 days in a row with good skin, and have one bad night which sets off 5-6 days of pain and inflammation. And worst of all, because it is set off by scratching, it sometimes seems like it is my own fault. I have an undercurrent of guilt like a lapsed Catholic!

Sometimes it gets so bad I feel like staying in bed all day and simply refusing to see the world, but I have managed to resist this so far. I like to see this as proof of my own stubbornness, inner strength and willpower, but that’s probably just a self-serving bias on my part.

🙂

Wolf Cub

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~ by wolfcub on April 30, 2007.

21 Responses to “Eczema Info and Rant”

  1. I just googled “Eczema Stubble” because I noticed that I seem to be allergic to my own stubble – how unfair is that? Anyway, I see I’m not alone in that, I think I’ll shave more often.

    I know what you mean about steroids, I try and avoid them. I’ve managed to stop using them altogether after a course of phototherapy. Also look up ProTopic (Tacrolimus) ointment, that’s a good steroid substitute.

    As for showers, try using Oilatum shower gel, and only use soap in “hygenic” areas. I shower everyday, but keep my body soap free, so neither smell nor dry out.

    Good luck.

    B

  2. Even though this article is quite old, I’m sure our problem still persists. I have eczema too, and right now the outbreak is pretty bad. It’s usually not too bad like only on my arms but now other places. It’s extremely frustrating waking up and noticing new blemishes caused by “myself”. Using topical steroid creams aren’t always the best solution for long term runs, and sometimes moisturizers don’t keep away the itch.

    Yes I have found avoiding showers help, especially the heal time since there is less irritation and there isn’t an urge to pressure wash that area and then dry hard with a towel to calm the itch. You can always still use a wash cloth though and wipe clean. It’s better than nothing.

  3. Hi guys,

    I have recently started on some new drugs: 100 mg azathioprine and 5 mg prednisone daily (more prednisone to begin with). When I started it was magic. My eczema retreated for months. A persistent patch on my hands which I thought was permanent competely evaporated.

    Side effects: if I take the pills on an empty stomach I get a bit of a stomach ache and nasty burps, which is a bit gross. Taking the pills with food every time solves this problem.

    Currently my skin is not entirely happy (still have a regularly flaring patch on my shoulders and neck) but it is much more under control than before. If you have serious eczema I highly recommend asking your doctor or dermatologist about going on azathioprine.

  4. I know this is sort of an inappropriate comment but- finally!
    Someone who doesn’t have the pansy eczema!(Meaning a few spots.T-T in the summer.) I through the exact same thing.
    You most likely know this already but here are a few things I do to calm me skin down (especially during night):
    •We have a shower filter-it makes a fairly nice differnce.
    •Carefully choose what to wash your sheets with.
    •Keep the house nice and cool.
    •For lotion, I use Petroleum Jelly. It keeps your skin mosterized for a long time-unlike baby oil or day lotions.
    •Oatmeal baths, baths are sort of gross but I always feel relaxed after a nice oatmeal bath.
    •I hate this, but it works wonderfly. Apple Cider Viniger.
    Drink a glass a night(you can add other things to it) it tastes HORRIBLE, but it works.
    •Drink water-as much as you can. Or a differnt drink, one that relaxes you. I wind up drinking sweet tea all day.

    Eczema is hard, isn’t it?
    It hurts, it burns, it looks gross, and you can never really stop it, and then sometimes you feel bad for complaining-especially when people criticize you for being whiny.
    (Or as I said before, when you tell people what is all over you, they go I have that too! Then say they get a rash in the summer. T-T lol just me that gets annoyed? Eh whatever. 🙂 )

    Hope some of these tips helped,
    and hope your skin feels better.

    =)

  5. Prednisone really is magic, isn’t it? I have eczema on my cheeks and especially on my forehead. I recently did a week long treatment of 50mg a day. It was amazing how fast my face cleared up. It was a friggin’ miracle. However, when I stopped it (a few days ago, actually), my eczema came back with a vengeance. In just two days my forehead flared up so bad that it was actually swollen and gave me a headache. I’m taking Advil now to keep it down and will see the doctor again in a few days.

    I’m sick of it. I’m sick of people asking “What happened to your face?”. I look diseased and it really affects my self confidence. I totally relate when you say you want to stay in bed all day. You’re stronger than me though, because sometimes that’s exactly what I do. I’m embarrassed to come to work most days.

  6. My meds are now 100 mg azathioprine and 10 mg prednisone a day and I have almost no eczema. The only thing I have to do is put moisturiser on my neck and face after I shave. The tiny remaining patch of eczema on my ear gets a bit hot during/after exercise but that’s it!

    Because my eczema is so much better I no longer have to worry about having showers every day, which detergent I use. (I still wear all-cotton clothes and remain labels from the neck of t-shirts though).

    Again, I recommend those with serious eczema ask their doctors about the azathioprine/prednisone combo. It’s really helped me out.

  7. My daughter just had a strange allergic reaction and her eyes swelled up like marshmellows and I had to take her to the ER. She’s getting allergy tested next week. Meanwhile, my eczema is acting up the worst it has been in years, though mine is always in April/May or Sept/Oct. So I suspect it is pollen related. My son has bad allergies/asthma and has a standing script for prednisone and I just took 40 mg. Eczema sucks. I’m itching everywhere!

  8. just found this as i googled ‘prednisone eczema’ as my five year old is taking it, prescribed by a GP (non-specialist dr) & i was a bit unsure cos a dermatolgist once told me he shouldn’t take it because it will clear it up fast but then it will come back worse once the course is stopped.
    anyway, it has been great to read this. i get so sick of all the anti-steroid comments from people who have no idea. my mother in law is on some serious steroids for a terminal condition so i know the side effects can be bad, she has developed diabetes & high blood pressure & has ballooned, but that is because she is on really high doses.

    i will do anything i can to keep my son’s eczema under control, it affects his life so badly when it is at its worse. and at its best he is still spending his life scratching when he wants to be using his hands for other activities.

    i’m so glad i’ve finally found a dr who takes it seriously (after two dermatologists & six other drs) & is going to keep trying until it is under control. it is such an enormous relief.

  9. I made a comment on this page back in January. I ended up going to a dermatologist and it turned out that I didn’t have eczema at all. It was actually acne! He prescribed me an antibiotic called Minocycline and a sulfur-based cream. His prognosis was right on the money because it only took a couple of weeks for dramatic results. And they we’re permanent. I was so surprised that acne could look like that.

  10. hey care to share how you made those restraints and how you can take them off whilst still being strong enough to stop you from scratching?

  11. Hey there, I made the restraints very simply, they are made out of leather about 100 mm x 200 mm (trim them so they fit on your wrists obviously). A hole punch made some holes in each side, then I used a bit of 4 mm cord to stitch the sides together. Give the cord lots of slack so the open wide enough to easily get your hand in and out.

    I put a sock over my hand and slip the socked hand into the restraint, and you pull on the cord with your teeth to do it up. My restraint was nice and tight once pulled, but for extra security you can tie a knot using your teeth and the other hand (even with a sock over it). 🙂

    In addition to the socks, I sometimes ran a short cord from my bed leg up onto the bed, tied onto the restraints. This forces you to sleep on one side with your hands near the edge of the bed, and helped me not scratch various parts of my body when the itching was very bad.

    I made a second pair of restraints with 4 large snap clips on each side. These are more difficult and expensive to make, and they are easy to get on and off, so they may not do as good a job at stopping you from itching as you’d like.

    Looking back, I’d suggest that if your eczema is bad enough to warrant restraints while you sleep, you should go to a specialist (or get a second opinion). Prednisone, azathioprine, and antihistamines like phenerghan (good for helping reduce night itching while you sleep) should make it possible to get your eczema under control. Again, you shouldn’t really have to go these extremes on a regular basis.

    Good luck!

    • I googled ‘scratching eyes while sleeping eczema” and found your comments. So glad there’s others out there that suffer from really bad eczema. I normally have my eczema fairly in control (an occasional little rash on arm or leg) however my eczema has flared up majorly in the past 8 months.

      I got married 8 months ago, my husband has moved in and my eczema went through the roof (not to mention unfortun. alot of arguing). I know they say stress can really exacerbate eczema & make it worse. I now have it all over my face (eyes, cheeks, all over forehead, bridge of nose, chin and jawline). My main problem is that just like you, I’m scratching at night while awake in bed, as well as while I’m sleeping (sometimes I wake up & I’m scratching, or I scratch while asleep and wake up w/ my skin red and burning).

      I’ve bought hospital velro restraints (which must only work on a hospital bed & not a queen bed), as well has velcro hand mitts (typically used for patients so they don’t pull out their IV’s etc).. really weird stuff I know (my husband thinks these things are a crazy..but then again he doesn’t have eczema and has no idea what it’s like to have it). I just end up taking them off in the middle of the night while asleep & itching my face where I wake up and the skin around my eyes is puffy, peeling and chafed. I’m so self concious when I go to work & out w/ friends, plus getting pre-mature wrinkles all around my eyes and cheeks from the itching & cortisone use. Help! I would actually like to see a picture of the restraints that you made (so maybe my husband can try to make them), or even, if you’re willing to sell me a pair. Pls let me know 😦

  12. great site, I go through all the same miseries;
    prednisone is a miracle, if only I could take it all the time…

  13. felt good reading the same problems i have…….

    i have a question that…………do different kinds of food have effect in itchiness and eczema?………..if so what kind of food to avoid

  14. My eczema is 100% affected by food. If I don’t eat dairy or wheat (being careful to COMPLETELY cut out all forms – even potato chips can have whey powder in their flavouring …..), then my skin is completely NORMAL!!!!

    I’ve seen Dr’s and dermatologists who are happy to prescribe drugs with permanent side effects, or suggest routines that add an hour of preparation to your daily showering using a multitude of expensive, messy, shiny, greasy creams …. but NOT ONE of them suggested modifying my diet.

    The only real way to find out if food is causing the eczema is to go on an exclusion diet. This can take a month or two to do, and you need to be committed, but the results are potentially well worth the effort. Google ‘exclusion diet’ and you should get ideas of where to start. Personally, I cut out all food for 24 hrs (during which time the redness and inflammation eased), then brought in plain, unprocessed whole foods like corn on the cob, and unseasoned rice. Things like dairy, wheat, eggs, soy, nuts, shellfish and citrus fruits are common allergens. I had a suspicion that my allergy was either dairy or wheat, so I reintroduced them to my diet last. After reintroducing dairy, my eczema flared up. It wasn’t an immediate reaction – more like within 24-48 hrs my hands were itchy. For me, dairy seems to kick off blistering eczema on my hands, and wheat kicks off a more widespread, dry eczema on my inner elbow, torso and legs. I have now come across two other people who also had blistering eczema on their hands, who find that this is related to dairy. I have tested negative to coeliac.

    Every Easter and Christmas I re-test myself (it can be hard to resist chocolate and cheese!), and 7 years on the link between what I eat, and the quality of my skin is easy to see.

    I don’t think that all eczema is caused by food – but it’s definitely one avenue worth checking out. The cost that eczema sufferers pay in terms of pain, discomfort, embarrassment, etc is huge, and Dr’s don’t realise that many people would do ANYTHING to get rid of the itch, including cutting out foods that most people can’t live without.

  15. Hey everyone! Its great to see that im not the only person suffering from this but then again its sad to know that others are going through the same humiliation i am.

    I have eczema on my fingers . all over my neck. my legs and thighs. Calves. Behind my knees . . Pretty much everywhere including my cheeks. I was givin a cream and prednisone to take for 4 days.. nothing seems to work. ANY IDEAS as to wat i can use to get rid of it for longer then 2 days?

  16. Hey. I have eczema on 5 (not on the same hand) fingers and some on the back of my hand. Looking through your rant, I winced when I realized that you have it worse than me, seeing as how you have it on more places than I do.

    I’ve tried a bunch of different things like soaking my hands in a tub of warm water with garlic for an hour every night for a week… that seemed to work a tad bit. There’s no real cure, is there?

    But I’ve found something that might help. There’s this cream that they sell over in Viet Nam, I’m not too sure if they have it where ever you are. Basically, if I notice that my hands are uncontrollably scrabbling at each other, I’ll put a small dollop of this cream plus some non-scented lotion mixed with a tiny bit of water (it helps spread it instead of staying in a glob) at night. The next day, my hands would feel almost like as if I’ve never had eczema.

    Depending on how much cream you put on (obviously too much is going to keep you from sleeping), the cream will keep the eczema at bay for a few weeks, tops. It looks like this: http://www.veer.vn/Site_Data/Modules/Product/small_633827462186875000.jpg

    A google search will take you to two or three Vietnamese pages, so I suggest you try to find a translator since I’m no good.

    I’m sorry this was a bit long, but good luck on finding a way to control your eczema!

  17. Heya, found your site through Googling for my severe eczema. I’m pretty much experiencing what you were (?) going through. Anyway, I just stumbled on a method which may be usable for you: http://www.earthclinic.com/Remedies/acvinegar.html

    I just started drinking it yesterday, and I’ve yet to see any changes. However, since I’ve had this for the rest of my life, I don’t expect it to work in 48 hours just yet. Just thought I’d pass on the link to see if you’d like to try it.

    ~ Your fellow eczema sufferer 😦

  18. I’ve been suffering from eczema all my life, it wasn’t until recently that a breakout ever occurred on my face. The doctor has me on prednisone but it seems to be getting worse not better. I look like a monster, its covering my eyes and face like a mask. I’m terrified to go to work or out in public at all. It doesn’t help that I work in a brightly lit office and I’m surrounded by people who stare all day and make comments. The only thing I’ve ever known to help is Elicon cream but unfortunately you are not supposed to use it on your face. I couldn’t feel more alone in this because naturally my roommate has beautiful skin. I’m sorry you all are going through this too but I’m glad I’m not alone. I know this post is very old but it really helped lift my spirits a bit and I’m going to try some of your ideas.

    Wishing you all the best. Cat

  19. I have terrible eczema, I feel like since about 16 it has gotten progressevly worse. I have it all over my inner thieghs, my arms my back, my neck around my ears even!, sometimes it all goes away, and its very minimal. But when it gets bad it stays that way for a long time, I have two children now and I’m 20, and it gets so hard to do things for them, it hurts to wake up in the morning, and i cant carry them around like I’d like to. at night, my skin is almost always hot! and i tend to sweat (even when it’s cold) and than i itch, it seems out of my control!!

    i literally just took predisone, I have never taken it and am nervous cause all I hear is how terrible it is for you, but it’s my only resort.

    itchy,
    reese

  20. My eczema has gone down dramaticallly in the last few weeks. I believe it is because of the following reasons a) its not summer so may have something to do with it.. but tbh my eczema is usually worse in winter. b) ive been avoiding anything the doctor gives me for 3 months now and its working a dream i am sick to death of putting things on my skin that says its flammable. I mean come on. c) When my skin is a wee bit dry i apply a very very thin layer of hypoallergenic cream or body lotion to the offending areas (NOT THE OINTMENT- its too heavy and clogs and causes hives- only use this only really weeping eczema) d) I have also worked out that i was having severe allergic reactions to tomatos and eggs (baked goods fine – high temperature cooks out the allergens.) If you have a nice doctor who will send you for allergy testing do it –> i had to work it out myself as they refused to send me because apparently it doesnt help eczema well i think to be honest it is proof in the pudding that it does. I dont understnad why doctors in the uk are so bad with skin problems and they always refuse to refer to a dermatologist its ridiculous.
    I have been eczema freeish (Little patches nothing to bad) for 3 months except when i get very stressed out so please people stop putting petroleum and parrafin on your skin its a component in petrol for christs sake

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