Author Topic: Just passed my 2 year mark..  (Read 1352 times)

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Offline CML

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Just passed my 2 year mark..
« on: February 11, 2017, 07:26:59 AM »
Wow. Hard to believe on Feb 8 I passed the 2 year TSW mark.  So..My history is eczema since birth. (now 37).  In Childhood, I  had eczema probably over my whole body through the years but never at once.  In later life, mainly on hands, until I noticed it spreading to inner thighs and a few other areas I had not had reoccuring eczema.  Yup.. Steroids since I can remember.  Tried everything to get rid of my eczema with no luck.  And I mean everything.  Found ITSAN on Feb 8 2015.  Couldn't believe what I was reading.. So I thought what the hell..I'll stop steroids and see what happens..WORD of ADVICE.  It is real and you should really plan on going through this experience.  My wife , who's a nurse, thought I was crazy to believe and internet doctor..So did I, until Red Skin showed up within a week and spread like crazy..  Hands brutal, inner and outer thighs red, eye swollen, patches on armpits, stomach etc.  zingers, literally jumping out of bed, sleep loss etc.  Most of the symptoms ITSAN discusses.  Likely I never had full body but was scared *tless I would..
Tried many remedies..and the best one and hardest one was Moisturizer Withdrawl.  I was moisturizing 10-20 times a day before TSW..not going to discuss this process in detail as I have already posted numerous posts on this topic.  Read Dr. Fukayas blog to learn more.
Where am I now... RED SKIN SYNDROME is gone... I wouldn't say I am cured of "eczema" yet but no more red.. My hands flare in localized dryness which still cracks at times, but less then when using steroids.  Still think I am healing and will continue to heal.  Hopefully get to 100%.  Redness and crazyness took about 1.5 years of on and off flaring to subside.  I never thought I would get to where I am now.
TSW or RED SKIN SYNDROME has changed my life.  It is the most embarrassing and difficult thing I have every experienced.  No one understands. (my wife does It really makes you look at life different as many have mentioned before me..
Anyway, there is lots more to say but thought I'd give an update.
Thank you ITSAN, DR. RAP, FUKAYA and others who have shared there experiences.
35 years old.  Using various topical steroids entire life..mostly betamethasone .1%.  Started withdrawl February 8 2015

Offline BraveC

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Re: Just passed my 2 year mark..
« Reply #1 on: February 12, 2017, 07:43:25 PM »
Thank you so much for the update. My son is almost 17 months and we still deal with his TSW on a daily basis. I really hope the flaring and itch pattern subsides this year. This poor little guy is only 5 and has been through so much this last year and a half.
Parent of 4 Year old. Applied Triamcinolone .1% 2 to 3 times a week for 3 years. Also used Protopic and had prednisone a couple of times. Quit October 2015

Offline mirkahirka

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Re: Just passed my 2 year mark..
« Reply #2 on: March 09, 2017, 08:24:59 AM »
thank you for such a great update! Really inspiring.

Tomorrow it will be 23 months for me (2 years in April 2017) and it has truly been a rollercoaster.

My story is v similar to yours eczema since childhood and using Elocon intermittently since I was about 12, now I am 33. so most of my life. The first 3 months of withdrawal have been really brutal for me got all the symptoms you named, than I had  a break in summer for good 3-4 months where one could hardly see I had eczema, but it came back with vengeance in winter and lasted for about 5 months. It was bad but nowhere near as bad as the initial symptoms. Last year July I fell pregnant and from then things have been pretty rough for me. My skin got definitely worse, in fact consistently bad during the whole of pregnancy but no red, just super itchy with occasional flares.

Overall its getting better again and over the last 23 months I see consistent improvements. People say they cannot really see it anymore but my neck and face have still a long wait to go. We must remember that this is a process and it can feel really slow at times. Despite still having a long way to go, I don't regret it one bit and really believe that once my baby is born next month, I will see a huge improvement.

In the mean time, lets just hand in there, because I am sure it will all be worth it.
 :thumb up:

I hope 
Used Elocon since birth sparingly but for over 20 years. Started TSW in April 2015

Offline rodelady

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Re: Just passed my 2 year mark..
« Reply #3 on: March 12, 2017, 05:05:37 PM »
Hi. Same story here. I am 21 months on the road
 My skin has 80% healed. Those areas are strong and I can normal. I even have freckles back! And my skin has changed...I used to go red in face and not perspire when I got hot. Now I swear bullets when I get hot. Amazing. My trouble areas are my neck and face like the last post.  I can't help scratching.  I have found paracetamol calms itch as it is not a contact itch but from the nerve endings under the healing skin. I can tell when the paracetamol is wearing off as I go from calm to scratching in a short time.
When I scratch and break skin it still leaks and heals over and flakes off in 36 hours.
Any suggestions for neck and face? love with tip of my nose as it never got affected
Love the tip of my nose!

Offline DavidC1

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Re: Just passed my 2 year mark..
« Reply #4 on: March 14, 2017, 01:01:16 AM »
Great post!  Also I am 15 months in, I would say Neck and face still bad usually itch like crazy at night.  Anyone able to calm the neck down?  Or just time.  I did good in February but then pollen hit in the south.  Seems to make it worse. Any ideas?

Offline Rackin

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Re: Just passed my 2 year mark..
« Reply #5 on: March 14, 2017, 09:36:40 PM »
I'm a little over 8 months in and have most of my itching in my back but recently found I can get relief for a few hours with a tens unit on the lower neck. Your skin would have to be able to handle the sticky pads but it gives me some relief.