About Me

This is my story!  I had a bit of mild eczema as a kid growing up and have a family history of  the ‘atopic triad’ – I have eczema, asthma, and nasal allergies and so do two of my family members.  My eczema was always tolerable and well-managed and if present at all, usually just limited to some itchy spots behind my knees or in the crease of my elbows, or wrists.

When I was a teenager and in my early 20s, I hardly had eczema at all and could use almost anything I wanted on my skin – even those horrible scented body lotions that are full of chemicals and terrible for people with eczema.  I usually used products for sensitive skin, like Aveeno, but generally I was not at all limited in what moisturizers or makeup I used.

I did have a period in my 20s where I had bad eyelid dermatitis.  I still am not sure what this was due to, but I was prescribed the steroid Desonide and I believe this was my first instance of using steroid creams for eczema/dermatitis, although I didn’t use them long-term.

However, after that cleared, I had relatively clear skin that I didn’t really pay a second thought to…. until around July of 2010.

It started with a small persistent rash under my left eye that WOULD NOT go away.  It sometimes got better and sometimes got worse, but it was almost always there.  Then, my skin started getting more and more sensitive.  I used to be able to use Aveeno sensitive skin moisturizer, but even that would break me out in a facial rash.  I tried many, many remedies to no avail.  Over time, the rash slowly and gradually got worse, and the skin on my BODY also became more and more sensitive.

Fast forward to summer of 2012 when I started this blog.  I was fed up of constantly having a patchy rash on my face (and body) when I had changed or gotten rid of all possible triggers (laundry detergent, facial care products, makeup, not wearing perfume, etc.)  No matter what I did, the rash slowly and insidiously started to get worse.  On this blog you’ll see that I had tried many, many things – naturopathic/homeopathic doctors, diet changes, steroid creams, etc., some of them bringing temporary relief but none of them resolving my issues.

To make matters worse, certain foods seemed to start bothering me, even though previously I had no known food allergies or sensitivities and ate whatever I wanted – dairy seemed to make me rashy and itchy, citrus foods and tomatoes gave me perioral dermatitis, and coffee bothered my skin too – just to name a few, because it got to the point where nearly EVERY food was suspect.

I had struggled with slowly worsening or sporadic eczema/rash/dermatitis on the following parts of my body for MONTHS – face, neck, shoulder area, elbow crease, wrist and hands, stomach, lower back, groin, and legs from the calf upwards.  The only places that were constantly clear are my chest, upper back, butt, lower legs, and feet.

It sucked to get up and look in the mirror and think “I used to be pretty once”.  It sucked to itch uncontrollably.  It sucked to have a closet full of clothing that you can no longer wear because of all your visible rashes.  Eczema affected so many things, including my relationships, my marriage, my social life, and my confidence.  I’d like to even blame eczema for the fact that my husband decided to give up on our marriage and file for divorce, even though it isn’t to blame, but probably was a big catalyst.  It truly turned me into a different person – no longer happy and carefree, but reclusive, moody, obsessed with my skin and chasing for an elusive cure.  I don’t mean to make it such a big deal – some people say “it’s only skin”… but…. ECZEMA IS HELL!  Anyone that hasn’t suffered with it just doesn’t understand!  This has been my journey to rule out triggers and find out what things work for me.

Around early 2013, I finally found the answer.  MY SKIN WAS ADDICTED TO TOPICAL STEROIDS.  Even though I wasn’t a hard-core user, I had used them enough and on high-absorption areas like my face, where my skin became dependent on them.  I went through a grueling nearly full-body withdrawal complete with oozing, flaking, a weird skin smell, uncontrollable itching, red burning skin, disrupted sleep and body temperature, and lots of crying and feeling bad for myself.

And now my blog has mainly become a documentation of my journey through Topical Steroid Withdrawal.  After grasping at so many straws for months, I happened upon the ITSAN forum and realized – this explains everything as to my ever-worsening eczema.  It’s been a long, painful, difficult journey but every day brings me a step closer to being fully and completely healed!

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70 thoughts on “About Me

  1. Tiff says:

    Great Website. It is nice to know there is other people out there who are going through the same ups and downs as me. I bookmarked your page and plan on checking back regularily! 😀

    • Hi Tiff! Feel free to ‘follow’ me (enter your email on the right side of the page) and then you’ll get an update when I make new posts. Us eczema sufferers have to stick together to try and find solutions and things that work! Thanks for visiting my blog 🙂

  2. Nicole says:

    Hello!

    Where are you based/from? I am writing an article on eczema & psoriasis care, and featuring the blogs I feel are most informative. Please let me know.

    All the best,

    N.

    • Hi Nicole! I am out of the midwestern United States. Glad to have you visiting my blog and I am flattered that you are considering featuring it in your article. I would love to read the article when you write it! Cheers!

  3. Jennifer says:

    Hey – would you mind adding a subscribe section on the blog, so I can follow you by email?

  4. Jennifer says:

    Yes, but that’s to subscribe via wordpress, not have an email sent I don’t believe. Not sure. I’ll see if your next post gets emailed to me or not.

    • I *think* that it is to have an email sent. We’ll see with my next post – if you don’t get it, I’ll see what I need to change! I still feel new to blogging and figuring out all the things one can do on here, haha.

  5. Hey girl! Send me an email at theallergista@gmail.com. I’ve got an idea!

  6. Leona says:

    Hi!
    So glad I found this site! Like you, I have struggled with mild-severe eczema since childhood. Steroid ointments have left dark patches on my face, especially around my mouth and eyelids. Thanks for the info about the concealer. I’ve used Tarte brand products before, but not this one. Looking forward to trying the concealer. Thanks again!

    • Hi Leona! Welcome, and thanks for visiting! Definitely let me know what you think of the Tarte concealer. It is a godsend for making me look normal and human during the day if my skin is red and flared!! I have experienced skin discoloration from steroids too – I had used Desonide on my cheek maybe last year, and that ‘bleached’ the area, leaving it not dark, but lighter. The good news is that it went away, so if your dark patches are a recent development, hopefully they will fade too!

  7. Louise says:

    Sounds like the desonide did this to you. The condition is called red skin syndrome and is characterised by the symptoms you describe. Please try and read Dr Marvin Rapaports papers on red skin syndrome if you can or Dr Mototsugu Fukayas book on the subject.

    • Thank you Louise. More and more I’ve been suspecting that this is the case with me, and I have been reading about RSS. Thanks for the tips and I will check out the writings from those doctors.

  8. Nancy says:

    Love the blog! I have had eczema around my eyes for about a year now. Elidel helps but I would like to figure out what is causing my flare ups. Do you have any suggestions for undereye/eyelid moisturizers? I’m excited to try the tarte concealer, btw.

    • Hi Nancy! Welcome and I’m glad you like my blog! Eczema around the eyes is the WORST. I can deal with the annoyance of it on my body, but I feel like everyone notices if it’s on the face, specially around the eyes – so I completely understand. The eye area is very sensitive so there may be something in your makeup that is irritating that area and causing flares… for me, things got better when I switched makeups and now I only use Tarte or Almay. My suggestions for moisturizers around the eyes: Right now i use Vanicream (you can read more at psico.com) or Avene Tolerance Extreme (which is expensive, but worth it to me because it feels good going on and doesn’t sting my uber-sensitive skin). I’ve also had success in the past with products from Paula’s Choice (www.paulaschoice.com) because her products are made without irritants like fragrance, irritating essential oils, etc.

  9. Abby says:

    Thank you for sharing this!!!

    I enjoyed reading about your journey, and I can definitely resonate with you! I have had terrible eczema for most of my life over my whole body – and now it is finally (mostly) gone. But it was an incredibly painful, devestsating and difficult journey – and I can empathize with how frustrating it gets.

    I enjoy learning about what other readers find helpful! I started a new website as well specifically for eczema…and to share my journey as well. If you’d ever like to stop by – feel free 🙂 It’s http://www.shampooforeczema.net.

    Looking forward to reading more – don’t give up even if it gets tough! You’re doing great!!

    • Thanks for visiting, Abby! I saw your story on your site and it’s amazing how you were able to heal! Your site has some great info and I plan on checking back or updates, thank you for sharing that. I’m grateful for your encouragement as someone who has “been there” and healed… most valuable!

  10. The Hannahs says:

    Hi!
    I’m an eczema-sufferer in my late 20’s with a son (my oldest of 3…all had some form of eczema at some point) who’s got some very severe eczema that we’ve been fighting for a year now. We’re just about to embark on a GAPS/anti-candida regimen (we’ve been on full GAPS for almost 4 months but cheated at least once during the first 3 and so started back at square one each time). Nothing has made a dent. We’ve seen a naturopath, done the topical steroids 6 months ago, etc. We’ve tried almost everything. I’m hopeful that with summer and warmer weather (we’re in the Midwest), his eczema will at least improve a little. I do believe his is candida-related because it got about 3 times as worse and refused to improve at all since he went on a heavy dose of antibiotics for an abscessed tooth he had about 8 months ago. Anyway, I’ll be following you, as I completely understand your pain. My eczema has remained fairly under control in my adulthood except for one summer when I was pregnant with my second and it spread like wildfire all over my neck, shoulders and arms. Thanks!

    • Hello there! Thanks for visiting my blog and sharing your experience. Kudos to you for trying everything you can to help your kids. I can’t imagine how hard it is to stay vigilant and have your son on that strict diet. Where are you at? I’m in the Midwest too, Michigan specifically. I really hope the GAPS and anti-candida diet work for your son. I agree with you that a big dose of antibiotics to a small child could well have caused the issue. The anti-candida diet didn’t seem to do anything for me but I started it around the time I also started withdrawing from topical steroids. I think that candida could have WORSENED my issue but I dont think it was the ultimate cause. But I know the diet can work great for many people so I’m keeping my fingers crossed for your son, and then hopefully he can gradually add foods back in and won’t have to be on a restrictive diet forever! Glad to hear your eczema is under control, I hope to get back to that point too where I was a few years ago and barely had to think about my skin 🙂 I appreciate you sharing your take!

  11. Cheryl says:

    Hi, I stumbled across your blog and like that your posting about your battle with eczema. I am in my 40’s and still struggle with it occasionally. In my 20’s I had a pretty severe case too. For myself I can say it seems to come and go without any rhyme or reason. Now the only place I have it is on my face and neck. I understand what you are dealing with. The redness and uncontrollable itching especially in the spring and summer. We’ve lived in many areas of the country from Alaska to Texas and Florida, and I can say that when we lived in the north I was better able to control my outbreaks. One of my sons had severe eczema from birth until he was about 10. He’s now in his 20’s and so far his skin has stayed clear. You hit the nail on the head when you said eczema is hell, others who have not experienced it have no clue what we deal with, as if we could just put some cream on it and everything will be better!

    • Hi Cheryl! Glad you found my blog and that you can relate! That’s interesting that things were better for your skin in the north. I live in the upper midwest right now and have always wondered if things would be better if I lived in a warmer state (since mine always gets worse in the cold weather of the winter). Out of curiosity, were you able to pinpoint a cause for your son’s eczema or did he just sort of grow out of it?

      • Cheryl says:

        In regards to my son’s eczema he just outgrew it. As a teenager he ended up having severe acne, of our 3 sons he was the only one who experienced such extreme conditions with his skin. Now his skin is clear.

  12. Stefanie says:

    Hi MsEzcemaExcellence,

    Thanks for replying to my post the other day on the ITSAN website. I decided to check out your blog. Love it! We have in fact had very similar paths with starting out with the Candida diet which eventually turned into the TSW path instead (or now at same time). I am continuing to follow the diet, although im not as obsessed. After the first few weeks on it, it has become easier to follow and doesnt stress me out as much. Instead I am now stressed with my TSW progress.

    Anyway, thanks again for sharing your story with me. Also, very sorry about your divorce. I can only imagine how this journey would affect a relationship. At least one good thing about being 32 and single with this issue is that I only have myself and my poor mother to obsess to (and probably annoy the crap out of). Ha.

    Hope your progress is continuing! Thanks again for sharing.

    Stefanie

    • Hi Stefanie!

      Thanks for stopping by my blog and for your kind words! I’m glad you enjoyed my blog and I hope you are continuing to heal as well! I will say that, regarding the Candida diet, even after I “fell off” the diet, I continued taking the supplements (probiotics and antifungals and milk thistle for the liver). I am healing quite nicely now and I have to wonder if the supplements affected that at all. I know that I would have healed regardless and ITSAN is skeptical about anything speeding up progress but I still wonder. Did or do you take supplements at all with your own candida diet?

      Thanks again for stopping by and if you ever wish to email me privately to talk more, feel free! Nubtorious@yahoo.com.

  13. Melissa says:

    Hi,

    I have a 2 1/2 year old daughter (who we just adopted) who has a very bad case of eczema. We’ve got her off most foods, are doing wet wraps at night (and sometimes day), giving her allergy meds, and moisterizing her constantly with natural stuff. But she itches constantly (especially during this horrible allergy season) and we’re getting 3 to 5 hours of sleep a night because we have to make sure she doesn’t bloody herself in the night. We’ve gotten to the point where we’re starting to use light steroids because we just can’t survive this. Your story scares me in terms of her having to deal with steroid addiction later in life. However, I don’t know what else to do. And at the moment, we’re dealing with staph again after being staph free for months. Anyone have additional ideas?
    I’ve been on the ITSAN website and am scared by all the people who are blogging who have not seen results after over a year (but are still hopeful due to others who had success with it).

    • Hi Melissa, welcome and glad you stopped by my blog. My heart really goes out to you for having to care for a young child with eczema and having to struggle through trying different things and getting very little sleep. Hang in there, I hope her skin starts to calm down and get better. It certainly sounds like you are doing everything right to me. She’s lucky to have a caring, loving mom like you!

      I don’t have enough knowledge to really comment on steroid use and eczema in children, as I don’t have children and I did not ever use steroids in childhood, but continuing to read threads on the ITSAN forum may be helpful. I also can recommend the blog on here “It’s an Itchy Little World”, where Jennifer writes about her experiences with her young son and his eczema. You say you’ve gotten her off most foods, but if she’s still suffering, I have to wonder if it’s still a food allergy or an allergy to something environmental. You also noted you just adopted her (and not sure if this was from a different country) so maybe her system is adjusting to the new environment here and something is triggering a reaction. The staph also complicates things. I do think there can be relatively “safe” ways to use steroids – just using them for a short period of time and low potency. Seems that most of us addicted people either used them a very long time, very high potency, or used them on high absorption areas. I really don’t know what else to tell you – I am sorry :/ Hopefully someone else sees this post or you can just make a new thread on the ITSAN forum – there are a lot of parents on there who can probably weigh in better than I can. Hugs!

  14. Lisa says:

    I came acoss your blog by way of searching for new products for my 11 year old daughter. She too lives with the agony of excema. 😦 We in the last 11 years must have spent 1000.00s of dollars on lotions and potions and books and foods and supplements. My heart breaks for her. Here are some items that we did find helpful. We have a filter on our shower heads. It strains out the harsh chlorine and we do notice a difference when the filter is up for change. We change it out every 6 months. We also use Dermarest medicated lotion. I find it less of a threat than prescription and it works. I use All Free clothes detergent. Never a softener. She eats very little to no sugar. Always notice when she does. No sugar cereals, no candy. She does not like candy anyway (I know most people gawk at us in disbelief) she would rather eat grapes and carrots LOL.
    I add pure fish oil to her juice in the mornings. And it is grape not orange juice as orange really bothers excema sufferers.
    I just got the Excema Diet book and have been trying some of her recipes. The beef broth is really good. She seems to like it. We also have tried gluten free baked goods.
    Cannot really tell if they work or not. Like I said though, if she eats sugar, her break outs are far worse the evening and next day after eating them.

    Thank you for your blog. I always show her that she is not alone. That in itself is a kind of relief. My hope is that someone can up with a full cure for excema.

    • Hi Lisa, thank you for stopping by and so sorry to hear that your daughter is also an eczema sufferer. She most definitely is not alone even though I know it may feel that way. My “eczema” now as an adult was actually due to topical steroids and my skin becoming ‘addicted’ to them and then subsequently withdrawing (as my posts from the last few months detail). Thank you for posting all those tips – The shower filter sounds like an excellent idea and one that I had been just about to try before I discovered the cause of my skin issues was mainly steroid creams. I do also use the All Free and Clear detergent too, and also take fish oil (and also have found that citrus bothered me). Also tried the whole gluten free thing, but noticed no impact. So your daughter and I have some more similarities 🙂

      Pretty amazing that your daughter eats barely any sugar. I haven’t directly linked itching or flare-ups to sugar for myself, but certainly candy isn’t good anyway, let alone all the dyes and artificial flavors on top of the sugar. So that’s awesome that she doesn’t eat it anyway. Sounds like she is one healthy girl besides the eczema and you are a wonderful mom for being so diligent and caring to try to ease her flares and itching 🙂 I have heard that many children “grow out” of eczema. I had eczema as a child (not horrible, but persistent flares in my knee, elbow, and hip creases and on my wrists and hands) but when I hit puberty, it all pretty much went away. Then I really had no more skin issues until early adulthood when my use of the steroid creams began. My brother had very severe eczema as a child, worse than me, but he also “grew out of” it as well. Hoping the same thing happens for your daughter with growing out of it, I know it gets so hard to deal with. I am glad my blog helped a bit, and I hope your daughter sees some positive healing soon!

  15. Jen says:

    I actually just left a comment on one of your older posts, but wanted to chime in again. This is related to the possible link between antibiotic usage and eczema. Have you ever considered taking a multi-spectrum probiotic? The idea is that when you take an antibiotic, it kills the harmful bacteria in your body as well as the helpful bacteria living in your gut. When those helpful bacteria die out, your digestive system is a bit weaker than it was before and can start reacting to food that normally wouldn’t bother you. Taking probiotics consistently can help build up those helpful colonies of bacteria again, allowing you to eat more foods without reacting to them.

    I think this digestive system/skin connection is also present for people who suffer from chronic acne, psoriasis, or other skin complaints. Compromised digestive systems can be symptoms of a compromised immune system, which manifests itself through our skin. I’ve personally seen a lot of improvement with my eczema after taking precautionary measures like switching detergents, avoiding caffeine, etc….but I’ve noticed that the reactions that I do have are much less severe now that I’ve taken probiotics for a few months. Please do give i a try if you haven’t before! The brand I take now is from klaire labs (vital immune 5), but I’m sure that there are many other wide-spectrum probiotics that you could try.

    • Hi Jen – Saw both comments and I appreciate you weighing in! Back earlier this year in 2013, I went on the Candida diet and did indeed take probiotics with (I believe) 7 different strains of bacteria – a pretty high quality one. My “eczema” was mainly due to my skin growing tolerant to topical steroids, which caused a “rebound rash”, but I am not ruling out the idea that my gut bacteria may also have been affected, as I had been given antibiotics a few years back and had also been on birth control (two things that may be contributors to candida overgrowth and kill those good bacteria). My skin is nearly healed today, and it’s hard to say if the probiotics contributed at all, but the logic behind it is solid.

      I definitely agree that diet must be considered in skin conditions. Definitely a diet comprised mostly of whole, fresh, unprocessed foods with minimal sugar, caffeine, etc., and maybe some supplements is the way to go for anyone, not just those with skin conditions.

  16. Tiff says:

    I know you are mostly healed now and I was wondering on your opinion about Protopic? i know you covered it about a year ago but do you think going off it could cause RSS? I have had eczema for about 4 years now. I have never used steroids, only Protopic and the eczema has slowly spread to my whole body. I also seem to have developed many food sensitivities that I never had. I am struggling to pin point what could be causing all of this.

    THank you for your blog btw! I check in every few days to look for new posts!

    • Hey Tiff!! Thanks for coming back! You caught me, I don’t post as much now that I am nearly healed. I definitely think that Protopic can contribute to RSS. I don’t know if you have been on the Topical Steroid Withdrawal forum at ITSAN.org, but I have read from a lot of people there that Protopic was a big negative for them. I personally don’t think it really helped me much and maybe made things worse in some cases. I know it is often touted as “not having steroids” but there has to be SOMETHING in it that affects the immune system somehow. Your experience definitely sounds like so many others (including me) – spreading eczema and sudden food sensitivities. I think it is worth it to stop the protopic and see what happens. You may end up going through a withdrawal but ultimately if that happens you will eventually be healed!!

      I am glad you like my blog 🙂 I will write some more posts soon!

  17. I just stumbled across Dr. Rapaport’s web site and found this web site after some additional “digging”. I’ve spent ten’s of thousands of dollars in an effort to understand a skin condition that was originally diagnosed as Seborrheic Dermatitis.
    Later I was diagnosed with Contact Dermatitis and some peculiar form of Eczema, or so they thought. I eventually ended up a the World renowned Mayo Clinic in Rochester, where up until last week they prescribed more steroid cream for an outbreak that ventured into my upper back and chest. My face over the years has become very red, almost everyplace.
    I refused this latest round of treatment and decided to follow the advice of people I’ve never even met. I truly believe what I am dealing with is Topical Steroid Withdrawal.
    My face is burning, itches and has flared up since I stopped yesterday. I realize I have a unpleasant journey ahead of me, but the alternative is far more unpleasant.
    I workout religiously, so I’ve made provisions with a friend that owns a personal training facility to use his facility until my condition improves. I am lucky enough to own my own business, so work presents little concern. Otherwise, I plan to be a little elusive until the worst is over. I am glad I found a site where other people are dealing with the same problem. It’s embarrassing and very humbling, but I am determined to forge through this and support other people that are struggling with the same problem. Thank you for the valuable information. I have a lot to read to appreciate a better understanding of what this struggle entails.

    • Hi Steve – My goodness, it certainly sounds like you are going through Topical Steroid withdrawal and have had quite a journey. I’m glad you have so many provisions in place to make things a little easier for you and not having to be out in public. I am with you on the religious working out, and it killed me to have to stay out of the gym for a bit when I was at my worst. It was more that my skin was sooo uncomfortable rather than simply feeling self conscious. It absolutely is humbling but having come out of it, I think I am a stronger and more resilient person who does not take health for granted so much. I am glad my blog has been helpful to you, and best of luck on your TSW healing. Do keep me posted on your progress!

  18. Tiff says:

    Just thought I would update you re the Protopic. I am now 19 days off it. I definatley flared up big time within a few days comming off it. Nothing near as bad as what i have seen on the ITSAN forums but bad enough for me, with puffy eyes, insomnia, crazy dry skin and a rash over my stomach and red face and neck. anyhow the rash is pretty much gone from my stomach but unfortunatley my face and neck are still super red and im very dry but I do feel a tiny bit better than last week. lol But hope this calms down as it is still very stressful and upsetting. So I definatley feel like im withdrawing from it. As least thats what I hope this is!

    • Thanks for checking in, Tiff!! I can’t say for certain but it definitely sounds like symptoms of withdrawal. One of my first symptoms was super puffy eyes and then of course also rash over face, neck, stomach, just like you. Just know that IT GETS BETTER IN TIME! I know it sucks to have crazy skin and not be sleeping. I’m not sure how long you’ve used steroids or Protopic for, but I am wishing you the best on speedy healing!! Please do check in again here and there and let me know of your progress!

  19. Tiff says:

    Hi! I thought I would check in and see how your skin is holding out now that its colder out?
    I am about 80 days (as of today!!) off Protopic and boy has it been crummy! I have had every listed withdrawl symptom. Currently im very painfully dry and flaky. I really hope things start getting better soon. Its truly hard to deal with this every day. Anyhow, I hope your well!

    • Hey Tiff! Nice to hear from you again! Well the cold weather has never been kind to my skin for the past few years, so I am really interested to see what happens this winter now that I am topical steroid free. It hasn’t gotten super cold yet here in Michigan except for a few days, but my hands are already getting drier and I have a few cracks on my fingers. But I wash my hands a LOT at work and I think the soap there may have some irritant (I should go back to bringing my own), so it may not be just the cold. Otherwise skin is still quite good!

      Congrats on your 80 day mark off Protopic! That is a great milestone. I started to really feel and look better once i was past 3-4 months, so relief is hopefully in sight for you soon!!

  20. stephanie says:

    Hello! Thank you for sharing your story! It is such a horrible to journey that many are unaware of. I spent a couple hours reading your blog last night; however I was unable to find anything that helped you through this – topical creams etc.? Can you direct me to some dates of blog entrees or products that helped relieve the pain? I am swamped with four young children and would love to spend more time on your blog but just don’t have the time to find the info.

    I don’t suffer from the steroid cream withdrawal – praise God – and so I will be throwing mine out! But as you, I’ve suffered from Eczema only slightly throughout certain periods of my life – usually brought on by the drugs im given during childbirth. However, it stays in the same spots and without spreading much and then slowly heals after 6 to 8 months.

    Fast forward, I have been clear for 5 years. Then two months ago, I small spot showed up on my neck – a new place for me. I just thought it would go away. Then it started spreading unlike never before all over my body. Ive never seen this! It is around my neck, moving down my back, around my waist, up my rib cage, the front side of my shoulders, and forearms. Amazingly it is all symmetrical – crazy!! So as this continues to worsen, I’ve realized that I might have a problem here…yikes! 🙂

    I found a bit of relief by putting on raw unpasteurized apple cider vinegar and then this morning tried the coconut oil. I’m still itching but not as badly.

    I too suffered asthma for my entire life, but was finally healed in the late 90s by eliminating dairy for 7 years and juicing.

    But everything i read is so terribly confusing. The wheat belly people say – get rid of the starches, beans, sugars and wheat – dairy is okay. Other diets say no to dairy.

    Anyhow – Any creams or supplements that youve read to have success, please direct me!

    And again, thank you so much for reaching out with your story!!!

    • Hi Stephanie, thank you for visiting the blog! I’m honored and humbled that you spent a few hours reading my blog…much appreciated! You can feel free to email me directly if it’s easier…. nubtorious (at) yahoo.com.

      Not sure if your symptoms are exactly like mine were, but to stop the itching at night (so I could get some sleep!) I would sometimes use a Benadryl or other generic antihistamine to soothe the itching a bit and knock myself out for the night. Sarna Sensitive cream can be good for itching as it sort of cools and dulls the itchy area. It doesn’t sound like you have any issues with it on your face from what you put, but Avene Tolerance Extreme cream is a very mild soothing cream that I used on my face at its worst. Dead sea salt baths can help, make sure the water isn’t terribly hot as that can aggravate itching. You can search one of my posts titled “SIx things that help TSW and Eczema” and that tells more about some helpful things.

      Diet is a very individual thing in my opinion. I personally think that we really should not be eating too much gluten or dairy or sugar anyway, but I do still eat these occasionally. It wouldn’t hurt to try an elimination diet for a few weeks, cut all these foods out, and gradually add them back in one by one to see what happens. For some people, diet is a HUGE part of the puzzle, for others it is not.

      Hope this helped a bit and if you have other questions feel free to contact me via email!

  21. Hayley says:

    Thank you so much for being so brave and documenting your journey. I have been suffering from eyelid eczema since December. My dr prescribed a medium steroid cream which I used on/off for several months. Eventually it wasn’t working and would sting my eyelids upon contact. So I decided to do some research and figured I have topical steroid addiction. I’m 8 days into the withdrawal process and my face has swollen so much I can hardly see out of my left eye. My dr wants me to take oral steroids but I am reluctant. I can just about live with the redness but the swelling is particularly distressing. Did you experience this? I hope your recovery continues to go well.

    • Hi Hayley, thank you for your kind words! I’m sorry to hear about your eyelid eczema and actually yes your experience is somewhat close to mine. My initial bout with steroids started with eyelid eczema and spiraled out from there. I did experience very swollen eyes in the first few weeks of my steroid withdrawal. I had to put ice on them every morning because they were so puffy. After a few weeks, the swollen eyes went away, but then the skin around them was extremely dry and tight. So, hang in there… because it will get better, hopefully sooner rather than later! Best of luck on your recovery, I am now healed from topical steroids and I have my life (and decent skin) back…you will get there too! Feel free to comment or email me with any other questions and I’ll be glad to help however I can.

  22. Samantha says:

    Did you ever have patch testing done? Or a blood test to test for food allergies/sensitivities to find out exactly what was bothering the skin? I have similar issues and am wondering if this will help! thanks!

    • Hi Samantha – I did not have patch or blood testing done besides testing for dairy and egg allergy back about 6 years ago (both showed no allergy). What was bothering my skin was being addicted to topical steroids, which wouldn’t have shown up on a patch test. You can read more about this on other posts of my blog, or can read about it on ITSAN.org! Hope you get to the root cause of what is going on with your skin issues and thanks for stopping by.

      • Samantha says:

        That’s true. What are your thoughts on Protopic, since it’s not a steroid? I was recently prescribed it and wondering if it might eventually have the same reaction/effect or if it would be “safe”. Thoughts? Thank your for your blog and help!!!

      • Hmm, Protopic… I recently had another reader ask about this and I shared my thoughts, but I don’t recall if it was under this post or the post I specifically made about Protopic (you can find my older post titled “Protopic, Paranoia, and Obsession” if you search). I personally am not a huge fan of Protopic. Yes, it did seem to help my skin a bit in the past before I was in full blown topical steroid withdrawal, but I didn’t like the initial few days-long side effects of the burning and itching. People recovering from topical steroid withdrawal seem very divided on it, from what I have seen – some swear it gave them non-steroidal relief, and some say don’t use it because of questionable effects on the immune system. Did you end up using it and if so, did it help your skin? I did not even consider using Protopic by the time I knew I was withdrawing from topical steroids, because I wanted to completely go medication free. I think it’s always ultimately better to get at the root cause of skin issues, rather than using a medication to possibly mask them.

      • Samantha says:

        I agree with you completely and decided to chuck the ($50!) protopic in the trash…. I’m about 4 weeks into TSW and it just wasn’t worth it to set myself back! One more question I have for you is do you have any recommendations for removing makeup? My face has got a lot better (I’m sure will get worse and then better again) and I am able to wear some makeup like foundation and powders etc. to cover up the blotchiness, but I have yet to find a good solution to remove it all at night. I’ve used a washcloth but feel like it’s not doing the job, using coconut oil just broke me out, and most cleansers with too many chemical ingredients are just too harsh and irritating (I think even Paula’s Choice looks too harsh for me). Any ideas? Couldn’t find much on ITSAN forum for help. Thank you so much again for your blog– finding your blog was the reason I found my skin troubles were all related to steroids! You basically saved my skin 🙂

      • Thank you for the nice comments!! I am SO happy that this blog was helpful to you 🙂 My recommendation for removing makeup naturally and easily is grapeseed oil (that’s what i personally use). It is not as thick as coconut oil so I don’t think it will break you out (I haven’t had an issue with me breaking out and I do have somewhat naturally acne-prone skin now that my eczema and dry skin is all healed). I dip Q-tips into grapeseed oil and take off my eyeliner that way, and then gently use a bit of it to remove mascara. I know you mentioned Paula’s Choice even looks harsh for you, but they have a makeup remover that looks excellent – you can purchase a tiny sample so that you can try it without the risk of having a whole bottle of something you don’t like.

  23. Helena Wilde says:

    Thank you so much for this blog. I have been struggling and depressed for months. I had no idea RSS or steroid withdrawal was a thing. Been using steroids on and off most of my life and in the last year things have spiralled badly. So good to find hope again.

    • Hi Helena, thank you for visiting! I continue to be humbled and appreciative of the many people that stop by and thank me for helping, and you are no exception. There is definitely hope with stopping the use of steroids and you CAN have your “good skin” back again in a matter of time and healing. Feel free to keep me posted on your own healing and I wish you the best!

  24. Samantha says:

    Thank you so much – I think I will give grapeseed oil a try! Do you think it will remove other face makeup (concealer, etc) or is it just good for eyes? I’m also wondering if you wore makeup while going through TSW. I’ve looked at so many blogs, and it seems that a lot of my symptoms seem most similar to yours, rash/color wise. Did you find you were able to wear makeup throughout the day, or were you just too dry/flaky sometimes? That’s how I feel but I do have to work full time with a tomato-face… just curious what worked for you!! Thanks again so much!

    • Hi again! Yes, it should remove other face makeup. I would possibly use a washcloth to gently remove concealer along with the oil if you are not already using some type of facial cleanser. I did wear makeup while going through TSW… at the very worst I absolutely HAD to have concealer over almost my whole face and neck, otherwise I would have looked red and awful, so I get what you are saying 100% about having to work full time. I was generally able to wear makeup throughout the day without it flaking off, although by the end of the day my face would get pretty tight and flaky feeling and itchy. This was probably just from TSW and not necessarily from wearing makeup. The key for me for the makeup/concealer to go on well was to have my skin well moisturized. Not sure of the dryness of your skin but when mine was super dry, I would wet my face and use a few drops of grapeseed oil and then lock in that moisture with Vanicream lotion, sometimes even a touch of Vaseline. Then I would layer Tarte concealer on top of that over all my reddest areas. Yes it would make my face a little bit shiny but it was better than too dry. Eye makeup didn’t really bother my skin either so I wore mascara and eyeliner almost every day too as I feel like I look way tired without it and I already looked awful enough with TSW. (Tarte and Almay brand). Glad to help and let me know if you have any other questions!!

      • Samantha says:

        You have been so helpful!! I do search most of these things on ITSAN, but I find it to be incredibly disheartening sometimes since a lot of info is from 20+ year ts users whose withdrawal is still going on after 2 years… my usage was similar to yours, hence the many questions! Thank you for the tips, it sounds exactly how my skin is… OK when moisturized in the AM, but a dry/flaky mess come afternoon. I do have one other question… I do have the tell tale redness on my face (it looks like a map of the earth, i swear) but some of the red parts are actually raised and a bumpy, much like eczema I guess, or what I would have thought to be eczema back in the day. These patches (mostly on my cheeks) are the parts that get itchy and dry and will weep a little if I itch them too much. I know you had the redness, but was your face relatively smooth (aside from general flaking) or did you have any patchy/raised itchy areas? I have no idea if these is “normal” or if its maybe from a product I am using; anything that is off with my body right now I immediately blame TSW!
        Also, do you find you no longer have flares after your 1 year mark? It would be amazing to see your post TSW skin in pictures for comparison if you ever have the time or plan to— I’m sure I speak for others who visit your blog too 🙂 its really been so helpful! Thanks again!

      • Hey Samantha! My face did not have raised itchy areas… it was more just dry, flaky, cracked, a little bit of weeping at its worst. It’s very hard to tell with TSW because it can seem like ALL products react with skin. I don’t think it is an abnormal thing though, probably just a TSW side effect that I didn’t happen to have. And YES! I have ZERO flares after about the 1 year mark, actually I considered myself pretty much healed before a year, I would say at about 8-9 months I was “normal”. I do have pictures of my TSW scattered throughout my blog but you are right, I don’t have them all in one place for comparison. You are more than welcome to email me and I will send you some before and after pics via email! Glad I could be helpful and please keep me posted on how you are doing with healing!

  25. Peter says:

    You have had quite the ride! It’s amazing to read about how far you’ve come! I’m writing to you because of a product I think you will absolutely love. It is completely hypoallergenic and will make all the difference in the world. Can I send you some to try? It is called TrueLipids Relieve and Protect Ointment. It will work wonders on your hands when they dry out,

  26. Hey girl! Just thought about you 🙂 Hope all is well! xoxo

    • Well hey there! Thanks girl for stopping by and thinking of me! Things are indeed well, enjoying life, being outside, being creative, and having NO SKIN ISSUES! I hope you are doing awesome and enjoying your custom-made guitar so far 🙂

  27. IDE says:

    Hello ,My daughter Is struggling with redness all around her neck and back and side of face and eyes.This has cause her to stop going to school because of how kids are mean if you can reply back and tell my daughter how you overcoming this because she is sad about this it’s been months.I would greatly appreciate it.

    • Hi IDE, I’m really sorry to hear that your daughter is struggling with skin issues and kids being mean because of that. While my worst skin was as an adult and not as a child, I definitely know how it feels for people to stare or make rude comments. My first inclination would be to wonder what is causing your daughter’s skin to break out since you said it’s been months, and to ask if she is using topical steroids or has a past history of using them. Other causes of this could be food allergies or environmental factors (like pets or detergents). I hope you can get to the root cause so she can have clear skin again. But as regards to people being mean, it sounds hard in practice but it’s important to keep your daughter knowing her self-worth doesn’t lie just in how she looks. Having a creative hobby can be really helpful in keeping your mind off your skin and then you have a sense of accomplishment in doing something. Not sure how old your daughter is but I would also suggest talking to her teachers if you haven’t already, if the kids are being so mean that your daughter doesn’t want to be in school, the teachers should be able to intervene and create a better learning experience.

      With my personal experience, I had to suffer with terrible looking skin for quite a few months, but as I endured healing from using topical steroids, I knew that one day my skin was going to be okay and today I have almost zero skin issues. My best thoughts go out to your daughter, I know this is a relatively short answer but let me know of what other help I can be!!

  28. PJ says:

    Thank you so much for your bravery in this blog!

    I’ve suffered from severe eczema my entire life, and it’s gone through its stages of ups and downs. Currently I’m dealing with a VERY stubborn and sensitive case of perioral dermatitis which I have suspicions was brought on by what I thought was my miracle cream/cure for the eczema. I discovered Protopic ointment, a NON STEROID ointment (at last, a prescription ointment that won’t ruin me!!..or so I thought…) which was amazing in helping with rashes and dry patches but was accompanied by a whole whack load of side effects. Briefly, my personal list of side effects included splotchy red face when drinking, constant runny nose, and lowered immune system. It’s my suspicion that the Protopic’s immuno-suppressant factor is somehow in correlation with the perioral dermatitis).

    In doing research on PD I came across your blog. I’m not someone who usually leaves comments or writes posts on these things but I really want to thank you! Your post about waking up in the morning just to slump over to the mirror to assess today’s damage really resonates with me right now.

    Mostly, I want to thank you for your pictures. Like you, I get dressed in the morning with my eczema in mind: how can I cover it? I think most people with severe eczema think the same thing. But with everyone who’s suffering from eczema walking around life hiding their itchy, red, dry spots it makes for a lonely little battle! Seeing your progress, your fluctuating problem spots, was seriously refreshing. And ohhh so very encouraging! Knowing my elbows and knees aren’t the only ones who look like my cat and a swarm of bees attacked them is something I am truly thankful for.

    Keep up your good recovery!

    • Hi PJ! Meant to reply to your wonderfully kind words a while ago, my apologies for the delay! I am so glad that my blog was helpful to you and thank you for stopping by and sharing a bit of your own story. I am happy to note that my body and system have completely recovered from my systematic eczema after the months long journey of getting the topical steroids and their effects totally out of my system … so it gets better! I wish you speedy and continued healing for good and I’m glad this could make you feel you were not alone in battling eczema!

  29. sharleen says:

    Hey there!! atm i am breaking out in the worst eczma all over my body and i just happened to find your blog post. ive always had eczma but not to this extent 😦 i’ve been searching absolutely everywhere for an answer! i started birth control about a year ago but didnt get any bad eczma symptoms till a few months in, now its not going away ahh! im starting to think it is the birth control, just wondering if yours cleared up after a few months too? please let me know how it went!!xoxo

    • Hey Sharleen! Sorry to hear about your bad bout with eczema! It is really hard to say if the birth control is the sole cause of your eczema, of course I am not a medical professional and don’t know your other habits, but if you haven’t really changed anything else like diet, environment, stress levels, etc., it definitely may be worth a try to go off the birth control and see if your eczema improves. I am of the understanding that both birth control and antibiotics can deplete the ‘good’ gut bacteria in our systems and sometimes that can make foods or stress affect us more, because our intestinal lining is more susceptible.
      For me personally, I was on birth control for about 3 years, and I don’t think it was the sole cause of my eczema – I think it was more of a ‘perfect storm’ of correlating things between that and my system getting over-tolerant to topical steroids, but I would have to think it contributed somewhat.
      My eczema did clear up but I had to go through a months-long withdrawal where my body healed itself from the damage done by topical steroids. Just going off birth control by itself didn’t seem to make a huge difference in my eczema… your experience may be different though. Keep me posted on how you are doing and I hope you can nail down the cause of it and heal quickly!

  30. Jade McDermott says:

    Hi! I was taking a look at your blog and I would love to gift you a sample of Elaj eczema relief ointment! It is an oatmeal based ointment that is all natural with NO STEROIDS, water, alcohol, hydrocortisone, parabens or toxins. Could you please send us your shipping address so we can send you a sample?

    Take a look out the reviews about Elaj – it is seriously the best relief on the market!

    https://www.trustpilot.com/review/www.getelaj.com

    http://www.amazon.com/gp/product/B019W16SRQ

    https://www.facebook.com/ElajNaturally/

    • Hi Jade,
      Thanks so much for viewing my blog and thinking of me with that kind offer! I took a look at your product reviews and I have no doubt Elaj is great stuff, I like that it is quite natural! I did use to have an issue with beeswax irritating my skin and have been reticent to try any products with it since. But, I am pleased to note that I actually haven’t suffered from eczema or ANY chronic skin condition anymore for years since going through topical steroid withdrawal, so my skin is happy and healthy with no need for healing products! Very much appreciated though believe me! 😀

  31. Jon V. says:

    Your blog has mirrored my experience and pain almost exactly. I am so frustrated with doctors and dermatologists who don’t seem to understand the sleepless nights and pain associated with this.

    I was free of any eczema rash for just over a year and overnight it came back and is covering a large percentage of my torso. Your experience with the topical steroid makes a lot of sense but I haven’t used it in over a year so am I supposed to just wait it out?

    I have found that Prednisone is the only thing that kicks it out of my system and I know it’s not healthy but neither is tearing your skin off and not sleeping!

    Thank you!!

  32. Hi!
    My 8 year old son is going through tsw. I’ve read quite a few blogs and wonder how your doing now? Thanks!

    • Hey Sierra, thank you for your visit. So sorry to hear your son is going through this. I am doing amazing now, thank you for asking! I have not posted on this blog in a very long while because my skin is beautifully wonderfully NORMAL! I am still careful about products that I use (avoid synthetic or cheap stuff) but I can use make up and products with scent and I have zero skin issues. All the bad stuff is a distant memory. I am glad I have the blog and pictures to remind myself of the suffering that it entailed but once your son gets through it, my hope is that he will have zero issues! Warm vibes to you and your son!

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