before i begin my monthly documentation..
to whoever’s reading this, i have a few questions for you.
1) do you live in a tropical region (humid and warm all year round)?
2) does your skin get better within 2 years?
i was wondering if climate is one of the reason why many of you are seeing a deviation in your healing pattern. some of you are flaring really badly at month 20 onwards. by then i’m pretty much able to function normally again.
let me know what you think.
my flaring history:
first flare started when i stopped steroids, it died down by month 3.
month 4 onwards it began to go into a second flare, in month 8 it was in full bloom. it dragged on for the next 12 months making very slow progress.
by month 21 i am not oozing anymore.
==================================
no tiny updates throughout the month means my skin is pretty stable for my 42nd month.
small cycles still occur, but the magnitude and severity is lessening over time.
curious rashes appear on my hand only to die down after 2-3 weeks. it’s still visibly drier there but it’s not red anymore.
my neck and upper chest area continue to be the weaker part on my body. the skin there appear thinner and i can see some wrinkles, pigmentation, and redness. and it gets irritated when i am soaked in my sweat.
other than that, everything else seems to be making steady progress.
i had some dry and rough skin near my back since.. hmm.. i’d say early april or may, they never bothered me, i can just see them slightly redder and raised in the mirror. over the months they flatted, turned slightly brownish and still dry, and finally being normal once again right now.
i haven’t been using moisturizer for a while just to see how my skin react to it. the skin on my body and arms seems fine, but the skin on my legs look kinda dry when i scrutinize it. it’s as though i can see scales on the surface.
sigh, steroids. what have you done to me.
no other complains so far 😀
no makeup and no filter face as of 10 september 2014.
stay strong peeps!
i only share my photos here to show you all what will become of you when TSW heals. i’m not here to incite any envy or disappointment in your healing progress.
take note that even though our symptoms are very similar, different people have different healing time. this is me 3.5 years after stopping steroids. i still have some minor remnant rashes and damaged skin over my body which are still recovering.
JUST KEEP YOUR HEADS UP NO MATTER WHAT.
try really hard.
of course i know that if you’re not on the same page as me, then no matter what kind of disclaimers i make, they simply won’t get inside your head and you’ll still be negative about the entire situation.
i’ll just say this one last time: THIS IS WHERE YOU’LL BE AT IN TIME TO COME.
ask yourself “what can i do to make myself feel better till then?”
NOT
“why am i not there yet?”.
stay strong, and good luck.
xoxo
juliana
Juliana's Topical Steroid Withdrawal Journey 
u look GREATTT with no makeup! ;D i live in nZ and the weather is almost unpredictable on a day to day basis sometimes haha but before TSW my skin used to always be better over in Asian countries when i went on holidays. i think it’s to do with the humidity, nz is pretty humid. i believe i will heal around 2 years tho with good diet and lifestyle in TSW. still lovin ur updates 😉 x
hey ah faye, thanks for the input! this is contrary to what the research paper says where damage skin heals faster in drier climates. it’s mind boggling. maybe it’s the dermal versus epidermal healing they’re talking about. i may have mistaken the superficial healing on the epidermal layer since i can’t actually see what’s going on deep within my skin.
thank goodness it’s humid in NZ then! you should feel better 😀
keep healing and smiling!
xoxo
Thank you for the update Juliannnna! I I’m in my 21st month and at the start of a flare but I’m pretty optimistic and excited for the coming months. To answer your questions: The last two weeks, I was in a humid city (and my skin was great!) but now that I’m back in the prairies(very dry), my skin doesn’t seem to be taking well to the re-adjustment. Although I’m flaring again, I can’t help but think the coming months are just more and more progress to be had. Thanks for keeping with your updates, it’s a pleasure following you!! xx
helloooo krys 😀 hehehe thanks for the input! hmm, i think your skin should be much better after the flare subsides! i’ve read in scientific journals that damage skin heals faster in dry climate.
keep your heads up!
xoxo
Hi Juliana,
Just nice I was checking to your blog to ask you a few questions about flares and duration cycles and you coincidentally answered them in this latest post of yours.
Only 1 question left to ask:
The biggest oozing is from your second flare? How do you determine when a flare ends and when it starts~??
It was noted by Dr Rapaport healing should not take longer than 2 years for all his studied cases. I am not sure whether we are alone here facing much longer than 3/4 years because we are not prescribed anti-biotics or painkillers or what, but I really dread to find out that you took 3.5 years being in the same country.
Guess I really need to study leaky gut diet…..
Meanwhile, am feeling always dirty, waking up in dried ooze and flaking broken skin all over, and soreness and itching all the time…..
sucks….
Thanks for your encouragements gal.
hey hey!
i define the beginning of my flare as a deviation from normal skin, usually this happens when the skin starts turning red and hot. the end is obviously when the redness dies down and returns back to normal. it’s a very loose term. different people define it differently.
hmm, i don’t remember seeing dr rapaport putting a limit of 2 years to the healing. perhaps he’s saying the red skin should subside within 2 years, but that is really high dependent on a number of factors such as length of steroids used and the strength used. damaged skin takes much longer to heal.
my skin is no longer red and hot after the 2 year marks. i’m just left with very minor rashes which don’t count as withdrawal symptoms anymore. they’re just sensitive skin due to steroid damage. so, please do not think that i spent 3.5 years fighting TSW.
also, dr rapaport’s case studies are mostly caucasians. caucasians and asians have some slight differences in our skin (read this), so it’s best to give some error of margins when trying to extrapolate his results to our skin.
it’s good to adopt a healthy lifestyle whether or not we have leaky gut or not. so there’s no harm to read up on that!
the one thing that can get me out of bed last time is the thought of feeling like a little mermaid in my shower. that’s the only time i feel normal as my skin is flexible once again.
good luck and stay strong!
Hmm I don’t live in a tropical country so can’t add much to the discussion in that regard BUT I noticed that when I was in SG sometime before TSW began, my ‘eczema’ was much improved and easier to control. In hindsight I attribute it to the humidity which probably kept my skin more moist and thus less dry.
HMM, thanks for the input derek 😉 but your skin should have adapted to the drier climate after a few weeks, right? whatever the case, i’m kinda glad i’m in singapore.
Yeah you would think so right? haha my derm always used to attribute any flare-ups in my eczema during winter to the drier weather so maybe there is some truth to the humidity = less eczema thought? I’m heading over to singapore some months down the track so we’ll see how that goes =) interesting thought though
Hey Juliana,
I’ve been popping by to read your blog ever so often. Thanks for doing such a great job on it! =)
As for your questions, I live in Singapore too and it’s been four years but I’m still having ‘flares’ that are so bad that I have to stop working for months. I think it really depends on the strength of the creams you had, mine were the most potent ones for both face and body (much stronger than what they give in Singapore, I was in US for a while) =/ Thankfully my flares are less bad each time, so that’s something to look forward to!
I’ve stopped putting a timeline to it a very long time ago as I realised everyone’s condition was different (I think it depends mainly on how damaged your skin has become, which the primary factor seems to be strength of cream used, the secondary being how long it’s been used, and a tertiary being one’s age/current health etc (from what I’ve observed).
I do suspect you are right though, that being in a humid country would help skin healing more. However, if you’re comparing an average healing time vs country/region, it may be useful, but other factors might be at play (I think in some countries they prescribe stronger creams more readily while others don’t etc) so I don’t really know if your collated results would really point to much.
On a side note, I’ve been using duoderm (hydrocolloid dressings) for my wounds and it’s helped a great deal. I think it heals the wounds from deep down, I’ve tried control tests a few times with half of a wound exposed and half covered and it seems to really help. (I’m a science person by training) In any case, it covers the ooze and I am able to live pretty normally most of the time
Again, thanks for doing such a great job on the blog. Keep posting! =)
hello huiling!
yea i’ve been thinking about the same thing as well, that there are more factors at play when it comes to healing. and you’re absolutely right about the different strengths of steroids being prescribed in different region. i just asked casually trying to see if it is worth looking into. if most people who’re in humid countries appear to get back to their normal life sooner, then it’s worth further studying which would then include all the other factors you highlighted. but since your situation already went against what i suggested, i guess my little attempt at trying to find a contributing factor to duration of healing is in vain yet again. how cool would it be if we can model the healing duration based on certain parameters that we can measure? 😉
i strongly believe that the humid country only help to reduce the possibility of dryness irritating the skin. whether or not it helps the skin heal faster, i can’t say for sure. for all i know it could be a superficial healing, masking the deeper damages within.
good lord. i hope you heal up soon. can’t imagine if i used anything stronger had i chose to continue with steroidal treatment. i thought elomet was pretty bad already. i was wrong.
as for duoderm, i’m glad that it’s helping your skin heal! just wondering, after those wounds heal from the dressing, do they wound again? or they’re gone for good? i think it’s a good way to deal with the oozing, but i’m not sure if it helps with actual healing in the dermal layer. i’m just speculating all these based on what i currently know, which may be insufficient to come to a useful conclusion. please do whatever you need to help you get by your day to day stuff!
🙂 thanks for the heads up, and i wish you all the best!
Hey Juliana,
I read about moist wound healing from this blog: http://topicalsteroidwithdrawal.blogspot.sg/2013/12/the-moist-wound-healing-method.html (I somehow suspect you’ve probably seen it before too haha). Although in the blog, the author heals pretty rapidly, I can’t say I’ve had the same experience — for me it was still slow, but faster compared to not dressing the wound at all. As for whether it really heals the damage deep within, I do believe it does (though I can’t say for sure). Because the skin is kept in a moist stage and there’s no “crust” that grows to cover (or rather, disguise) it, I’ve seen it change slowly from deep red wounds to less deep ones etc, albeit very very slowly. Also there’s less oozing than before, but I can’t say for sure that it’s healed completely inside. I’ve only started using duoderm this year, so I’m still using it on quite a few areas (so it might be too hasty to conclude) but the areas which I’ve stopped using them — they’re no longer grey and oozing and they feel less bumpy than before (whereas those I left open to ‘heal’, some still feel bumpy/flaky.. just not right in general if you know what I mean).. I don’t know if they would open up again though but they haven’t so far =)
Something interesting I’ve noticed — I realise that there are some areas of skin that seems fine (but it’s dark and bumpy)– I think those might be areas which haven’t healed fully although they don’t ooze. Anyway when I put duoderm on them, they start to ‘wound’ (become raised, start oozing etc), but then they heal up after that and become better than before. (Actually I’ve heard that oozing occurs so that the skin can be repaired faster — even in ‘normal’ injuries I’ve seen wounds oozing, so oozing is actually good although it sucks when you’re covered in it).
I used Clobex (Class I potency) and at my worst, I looked like Thing from Fantastic Four. But I look (almost) normal now, so I do believe everyone will heal in time =)
I still have some way to go but I’m doing fine physically (though I wished I could exercise but too much sweat makes me itch like crazy>< sorry for the long long reply!
Stay healthy and bubbly! =)
ahhh thank you so much for your details! haha yes i’ve read louise’s blog!
till this day i have no idea why we ooze. i thought it was due to the inability of our cells to keep the fluids to themselves, or the blood capillaries in those areas are so damaged by the steroids that the salt channel or whatever that affects the diffusion of interstitial fluids are broken. i would die to know all the stuff at a molecular level! hahaha!!! nerd talk.
duoderm. hmm. interesting.
hahaha sorry for laughing, but the image of “the thing” from fantastic four is.. hahahaha! but i feel you.
and please don’t apologize for long replies 😉 it’s a informative long reply that i enjoy reading. you can exercise in the future! hahaha every time i feel lazy about exercising, i remind myself how badly i wanted to work my ass off in the past when i couldn’t. so yea, you can be sure that this episode can fuel your exercise for life.
xoxo
Hi juliana~ another fellow singaporean here sufferring from eczema for over 10 years too.. 😦 stopped steroids for about two years but had a bad relapse about a few months back apparently after i feel my neck swelling in pain after being under the sun for a long day.. Went to several doc and they prescribed the same old steroid and i couldnt resist using them again.. Just stopped steroids again and having sleepless nights and random crazy itch at night.. Sigh~
Seemed like being under the sun aggrevates the symptoms..
i hope you feel better soon! sometimes things just happen very randomly. hopefully this time round it’ll go away faster for you! and do avoid the sun at the moment since it irritated your skin!
Hey Juliana!
Just wondering when did you started putting on make up again? I have a uni presentation and the lecturer insists that girls put on make up to “look more professional” in 6 weeks time but I’m afraid it’s going to irritate my skin. Although I feel as if I’m greatly healed compared to a few months ago I don’t want to risk getting worse from the irritation.
hey may! i started putting on some makeup around month 21 or 22? but it was only on places that aren’t rashy. i wouldn’t dare to put a thing on rashy skin knowing i’ll double the trouble (makeup and makeup remover later). i can only suggest for you to try it out on a small part of your face and see how it goes. if your skin still can’t tolerate it, i’m sure you can explain to the people you’re presenting to about your condition like “my skin was damaged by the derms and it can hardly protect me from the environment, as much as i would love to look presentable, my skin just can’t tolerate any more unnatural irritants and i seek your understanding. i assure you my skin will not affect my performance.”? hahaha just a suggestion 😉
Thanks for your advice! I’ll do just that 😛
you’re most welcome sweetie! good luck and all the best!
xoxo
Hey Juliana. As usual, thanks for staying so active on your blog. It is both disconcerting and comforting to know that there are many long-time sufferers on here. Thanks for building your own little small community here!
As for humidity, I’m not so sure. I moved from a more humid climate to a less humid one a year ago and I must say that my skin appearance looks way worse today compared to a year ago. Now, I’m not sure if that’s just the usual course of TSW or climate – who knows. I do know that when I visited Vietnam in 2007, my skin looked a lot more healthy (then again, I had ZERO control of my life then, all my relatives had their own theories about my skin).
hey sannnnnn! always love having you hear. i mean, i love that you’re responsive and positive but i wish you heal up one day even if it means you will stop visiting my blog after that.
these are the little things i can do to spread the hope 😀 you are most welcome!
some of the skin friends who are in humid climates reported a slow healing too, so it sort of debunked my hypothesis about humidity and healing. after all, the appearance of the epidermis speaks nothing about the dermis. the humidity may have masked the dryness, but the insides are still rotten as hell. don’t we all love steroids? seriously the best bio weapon human has ever created.
sigh.
anyway! STAY STRONG AND LOTS OF HUGS AND KISSES FOR YOU.