Having lived with eczema for most of my life, I’m familiar with many masks that have visited me over the years. It’s a particularly shaming condition, in a world where your appearance, perfection and looking good seem to be the aspiration of most and we compare ourselves to our peers and to the relentless polished images we see on social media.
I pretend I don’t care and have the attitude that ‘What you see is what you get’ but deep down a do care. I do care what society thinks of me, despite all my efforts to not give a damn. But I think deep down it’s what comes with eczema that is harder to live with. It’s not just the obvious appearance of eczema skin, it’s the constant itching, the efforts to maintain normal daily life, getting enough good sleep, and being able to concentrate, take part in and enjoy life with all this going on ‘under the surface’, under the skin…
It struck me that I’ve been hiding behind masks all my life. The first one being a steroid illusion.
The steroid mask – it works miraculously at first. But it masks not only the real trigger and cause of the skin condition in the first place but a far more worrying and sinister future to come. Many, like me, now face a terrifying prospect as we come to the disappointing and unpleasant realisation that this mask was temporary. One day the steroids stop working and you need stronger and stronger prescriptions. You discover you are addicted to steroids. Over the years I’ve begged my doctors for other answers and shared my fears with them, only to be told to keep using the steroids, not worry, to finish the course even when my skin seems to be healed. All terrible, terrible advice it would now seem. So my steroid mask has well and truly shattered. I need to decide whether I’m strong enough to go through withdrawal. A painful process that could take anything from months to years. Worse than the cold turkey of any other drug addiction. This will leave me house bound, ill, in pain and truly suffering. I don’t like the word sufferer, but for Topical Steroid Withdrawal (TSW) this word really is the only that applies
The Immunosuppressant mask – this one says it is safer than steroids on the packet. The promise of clear skin is an illusion. An illusion that also begins to crack. I would have still tried it. You can’t go back and have regrets. Protopic gave me years of relief from the pain and the emotional effects of facial eczema. But this drug also appears to have limited use. I’m finding flare-ups are recurring and this drug too is very hard to taper off and reduce the dosage. I feel tricked and duped into trying something that could also leave me facing a painful withdrawal. But what is the answer? Is there one?
The Methotrexate mask – This is a new one, and so far hasn’t improved my skin that dramatically, but the results are supposed to be miraculous if it works. So far at just five weeks in my skin is probably worse, but no worse than I’ve been through before, so currently I am continuing with a positive attitude. This too will pass. It might work and if it doesn’t I’ll move on to try something else. But I do live in hope that this won’t be a mask I have to eventually give back, like all the others; the steroid and protopic masks…
The happy face mask – this one is wearing thin. The daily grind of getting by, of smiling and dealing with just surviving with a skin condition takes its toll. I know there are people far worse off than me, but living with pain, even when you can see beauty in simple things and choose to live your live positively is wearing. It’s exhausting and it leaves you feeling guilty and worthless.
The make-up mask – because I can hide my flaring skin sometimes with foundation. Sometimes it is too bad to cover up. But often when I am wearing a mask of make-up to give me confidence to face the world I get compliments about how well I look. All the time, underneath my skin is raging and itching and I feel like a fraud because it’s just a mask I wear sometimes. When my skin is really bad I can’t even wear any makeup at all… so this one is not always available!
It doesn’t look as bad as it feels – and actually no one really gives a damn so why do I? This is so funny because often, possibly due to having eczema all my life I see myself with eczema and behave as if my skin is often worse than it is. Makes no sense, but perhaps it’s in-ground, to be eczema girl, that I don’t need to look in a mirror. I know it’s there… but actually it’s not! And sometimes it can feel so hard to cope, so itchy and so we, the eczema person, assume it must look like a raging red inflamed mess. The actual face others see couldn’t be further from that untruth. This funny cartoons explains this better than I can.
So what I wanted to try to explain from this short blog was that what I hope to one day achieve is a life where eczema doesn’t dominate. Where I have it under my control. I really do believe that this is possible. I have seen others battle through TSW to the other side. These guys are so brave. I’m not brave enough to make that fight right now but I’m working towards it.
For now I’m just trying on another mask for size. It’s not that nice yet but maybe I just need to wear it for a little longer before I get used to it.
Anyone else taking methotrexate for eczema? Did it work? Did improvements last? or will they come back after I’ve finished the course? I’d love to hear from you, all you beautiful masked warriors. I know who you are 😉
Nothing works especially drugs. Mine is diet related because USA has nickel in soil and therefore all plant based foods have it.
Hi Lois, have you found that a low nickel or nickel free diet helps your skin? How do you avoid all plant based foods?
Hi, Ruth. I was on a course of topical steroid cream for eczema on my hands and protopic for my face. Big mistake. I read all the horrible stories on the use of both and withdrawals and started to look up natural alternatives. Methotrexate is way, way, bad for your immune system. After many tries of different face lotions, facial masks, cleansers and skin lotions, I’ve settled on a standard regiment of natural products which work for me. I hope they can work for you. I now only use a steroid cream on my hands, on occasion, as needed. Get on a healthy Mediterranean diet. If you can, see a doctor trained in integrative medicine, start with this approach. They will test for other allergies that your standard doctor doesn’t test for. There are many who have stopped the use of these dangerous medicines and creams under the care of an MD or DO with advance training in integrative medicine. Here’s my face care regiment and my body care regiment: Face: Wash with DERMA E Skin cleanser. Apply Shesido Nutriperfect skin softener and Nurriperfect eye serum.. Apply skin softener with Shesido cotton pads. Face Moisturizer: Shea butter mixed with drop of Primrose oil or joboba oil. Dab fingers with water and apply on face and work in mixture, so it’s not dry on skin. When your face is irritated, wash your face, dry and proceed with applying ANDALOU, coconut water clarigying sheet mask. Place mask (unopened) in refrigerator to chill before using. Leave mask 20 minutes or longer. Rest. Remove mask and rub in the coconut serum from the mask. Best to do this mask in the evening. Before going to bed. Apple Cider vinegar mixed with water and chilled can help reduce itching. Wash off apple cider vinegar before proceeding with face and skin washing and skin care. Mixture ratio: 1 apple cider vinegar to 6-8 water. Apply cv with Shesido cotton pads. Soak the pads. Wash face after apple cider treatment. Use DERMA E Tea Tree and Vitamin E Antiseptic Cream as an alternative to the Shea/primrose/water face moisturizer mix. BODY SKIN CARE: Wash with Method sweet water body wash or Raw sugar simply body wash. Towel dry. Apply Now Solutions grape seed oil for sensitive skin. Wipe off excess oil. Apply Mustela STELLATOPIA Emollient Balm on body including hands. FOR HAND ITCH: Sometimes I wash my hands and squirt CVS Advance Wound Wash or distilled white vinegar. It stings, but I try to count to 30 and wash it off. Wash it off with hand soap. Then proceed with skin care. I do use a steroid cream for a day, sometimes 2-3,but I’m using steroid cream less as time goes by, I also use Vaseline deep moisture for severely dry skin as and alternative to STELLATOPIA Emollient. Be sure it’s the “emollient” you’re using. When face skin gets better, try cosmetics by PURE ANADA. FOR LAUNDRY: Use Sport Suds. Buy on their website or on Amazon. Use the Sport Suds washing cleaner too. It’s better known as a sport soap. It’s for all laundry. It’s hypoallergenic and formulated for sensitive skin. It doesn’t leave any residue on your laundry.. Change your towels daily and use only once. If you have central air/central heating consider getting an air scrubber installed and purifying system. Great investment. The air in my home was the worst culprit. Take a probiotic daily, and an anti-inflammatory supplement. . I take Natren’s Healthy Trinity Probiotic and Relief Factor for inflammation. Most of these items are purchased online and some are found at your local Target Store, health food markets and CVS. Shesido products at Macy’s or another major department store. Go clean and get off the Mexth and Protopic and work to use the steroid cream only as needed.
Hi Bertha, thanks so much for your comment. Are you saying that Methotrexate could damage my immune system? That does worry me, but coming off steroids cold turkey was just horrendous for me. I am hoping that a short course of this can help me with the withdrawal, but we shall see. I really don’t know the answer, I really don’t know which way to turn. Thank you so much though for all your comments above. I will read with interest and see if anything here can help. Because one thing I’ve learnt about eczema is that we are all different.
Have you tried Emotional Freedom Technique or Tapping as it is often known. This might help with calming you when eczema is irritating you? There are lots of videos online. A good intro at this website https://www.thetappingsolution.com/what-is-eft-tapping/#.
Here is an article about eft and eczema https://www.eftuniverse.com/skin-disorders/eft-tapping-solution-for-eczema.
No I haven’t Sharon. I will look into it. I am finding that meditation and mindfulness are both helping me.
My face is a raging mess at the moment. I’ve tonight read your pro-Protopic blog and all the comments and felt quite positive about starting using it tomorrow after finishing off all the gin tonight! Now I’m not so sure after reading about the many masks, wtf. Think I’m gonna go for the Protipic anyhow as I need some relief.
I really don’t know what to advise. I trusted the doctors and now find you can be addicted to steroids and these immuno suppressants too. It’s so terrifying. Why we suffer like this I do not know. It’s cruel, exhausting and painful. But you are not alone Ishbel.
Hi Ruth, how’s your skin doing now, any improvement?
Hi Ishbel, my skin is OK. I’m now about 9 weeks into using Methotrexate. My hands are bad and my face is flaring every few weeks, but that’s because I’m trying to cut out steroids. Topical steroid withdrawal is no fun at all. But I’m doing OK. Working on managing the pain and my mental health is helping immensely.
Hi Ruth, glad to hear your so positive. There’s a tsw group on facebook and also a methotrexate support one too. I used protopic and it cleared my rash very quickly but I think I came off it too soon and used Elidel too sparingly not realising it was so much weaker (though I’d asked for a weaker cream) now back on protopic to clear it again. We all go round in circles! I’m also allergic to nickel so am trying to cut out high nickel foods which are all the healthy ones like wholemeal, oats, nuts and seeds. Also trying with extra vitamins which I’ve never done before, but when desperate you try different things.
Wishing you all the best, stay positive!