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Encouragement from Veterans / My Post-TSW Check-In
« Last post by gmail on Today at 10:46:48 AM »
Hi Everyone!
 I've been TSW and (mostly) eczema-free since late 2014!! (Only mostly eczema-free since pollen and other allergens will make me flare a bit here and there). I started my TSW journey in January 2014, after battling life-long eczema. I used prednisone, triamicinolone, elidel, protopic, and OTC cortaid/hydrocortisone creams like it was my job. 2014 was a pretty horrific year, as many of you can understand, but I'm on the other side and forever thankful. I don't know why mine only lasted a year, but I do know that there is light at the end of the tunnel.
 I maintained sanity by taking lukewarm baths with Dead Sea salts, doing MW, and eating an elimination diet. I honestly don't think any of these things "cured" my TSW, but they gave me some comfort from the flares and the weeping. MW was simply due to the fact that anything I put on would burn, and my diet was due to the fact that many basic foods made me flare.
 I'm sending everyone healing thoughts and I hope that 2017 brings you healing and comfort!
Fox, I can tell you, for the majority of this condition I've been a night owl, sleeping when the sun comes up. It was the only thing worked for me. I think it has to do with your natural cortisol levels. Much like you, when I tried to sleep at night, I would wake middle of the night scratching and bloody, it was terrible so horrible. My skin was calm in the morning allowing me to sleep better.

This should give you an idea how this has messed up my home life.

I knew it was getting better when I could sleep a little at night. Now my sleeping habits are part habit and partly the condition but daytime sleep was the only thing that worked for me and it's still best when flaring bad.

What a mess...
Hi SwankyButters, seems like we are on the same page; TSW is for sure a result of steroid abuse and now stress (for some) is a trigger which causes flares. I feel that the higher the stress levels the nastier the flare.

Sleep is also so so important, I literally wake up every night at 3am, scratch for half an hour, then wake up feeling disappointed every morning! I've been told that waking up at 3am means that the Liver is damaged.. Does anyone have any ideas of how to achieve a full nights sleep?
Long Term Vets Still in TSW / Re: Over 4 years and a flare
« Last post by SwankyButters on Today at 08:28:34 AM »
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Hey @SwankyButters, I'm 3.5 years in and just having a really intense flare, after being over 2 years clean. I do not understand this at all. Have you every thought of using some cortisone cream to get things under control? 

(Hey Fox, no I have not thought of and would never use the stuff again, it's just not something my body likes. As crazy and this is making me feel, it was WAY worse before, not only when I quit but while I was still using. I read your other post and I feel the stress is one of the keys, you are on to something. I've tried keeping my stress down from the beginning (easier said than done) cause I knew it was connected, I felt stress always made flairs that much worse)

I haven't gone near the stuff since I quit but went to see my local GP yesterday, a very knowledgable chap, and he has made me feel that it would make no difference if I use the cream to get this flare under control. I goes against everything I have been thinking all this time. But this flare has knocked me for 6, it is as bad as when I quite, in fact this time its affected my eyes as well, an area which I have never had an issue with.

(I know how you feel but I think it only feels as bad, as least that's what I keep telling myself when I'm about to lose my * but it's true. I know, from pictures and when I think back, it was far worse. Seems being this close to the end and have another big flair seems worse in some ways. It's just damn heart braking in a way I can't express. Oh and I can tell you, this condition likes to move around a bit...)

Really really feel like givin up and trying to use the cream, just a little to see what happens. Hope you are feeling better and the flare is under control, cheers

(Yeah, I know that feeling... Either way you go with it, hang in there man... I really wish we were closer, we could commiserate and scream at the sky. Be well Fox.)

Hey George,

I think you are right in a general sense. Before this condition stress would never do anything like this to my skin. Cortisone did this to us, full stop. However, now we all have broken bodies, broken skin and trying to find a way to allow it to heal. Stress pumps up your natural cortisone and I have a feeling "because we are damaged" it has a similar effect to what topical would do to us. You give your body a big boost of cortisone and then it drops off and it could be that drop off is causing more problems. Maybe the body is just trying to find a way to get that steroid boost again. Who knows.

In any case, I know less stress helps, good sleep helps, happy distractions help, good food, loved ones, and being somewhat optimistic. Over the 4 years, for me, nothing else has helped consistently ... Nothing. It made an impact, if only a small one. Sadly it's a time game and not a fun one. Still on edge with this way more than I would like...

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I personally don't think stress necessarily causes it. TSW causes it.
4 years off TS and I recently got stressed with an apartment move and in general, my condition has made home life crazy stressful. However, there's an unknown factor I worry about...... when this condition is all done ..... I have to put my life back together somehow and I have ZERO idea how I'm going to do that. This is something I'm sure I have in the back of my mind. This thing has really wrecked my world... Stress on stress on stress.

Over all the condition is much better but where it's bad, it's still very bad. That underlying damage you talked about, that is there in spades, you can feel it's messed up in those areas. Oh and scratching the itch is way too satisfying and on top of that, it gets itchy when stress hits. It's like this horrible round and round.  I was one of those kids who grew up always asking mom to scratch my back, never lost the love for a good scratch. I'm the worst person to have gotten this condition partly cause of my love of scratching. I try really hard not to scratch and sometimes I succeed but most of the time I don't.

I also haven't been sleeping well, eating well, exercising or living all that well. I smoke too and I'm sure that doesn't help. I still have hope, it's guarded but it's there...  I know I have to switch some things up but much like my fear of the conditions aftermath, I don't really know how or where to start... It was nice to hear I wasn't alone and thanks for the ideas of how to switch stuff up.
I personally don't think stress necessarily causes it. TSW causes it. I think that for some of us it's a longer process than we first imagined and flares just see to keep coming.

I do believe though that when in flare stress can make that flare worse as (from my experience anyway) I scratch and and scratch and scracth and don't have the willpower to stop. Also you might sleep less due to stress which could weaken your defences. Etc etc etc.

That's just my opinion though based on not having anything like a TSW flare before I stated TSW no matter how stressed I was.
Long Term Vets Still in TSW / Re: before and after
« Last post by CarrieLou on May 24, 2017, 12:56:54 PM »
Thanks "Other Carrie."
Still healing on heels and finger...face will flare once in a while.
Good luck to you. Healing happens. No doubt...and I have been filled with doubt at various points.
Topical Immunosuppressants / Re: Permanent Damage
« Last post by Stinkers on May 24, 2017, 05:32:50 AM »
Hi Bkchu (and Leeboy)

There's definitely hope, it just takes incredibly long to see even the slightest improvement. The skin is still not always clear but I know it can at least turn clear at times, and is doing so more and more often. The recovery times are completely different from TS.

In terms of dose, for Vitamin D I use between 3,000 and 6,000 units sublingually. The upper safe limit I think is around 50,000 units a day - which if you do regularly puts you at risk of hypervitaminosis D so there is a lot of leeway to find a dose for you which is sustainable and makes a difference in the low thousands range. I will post about vitamin D in the general forum as it really is a significant compound. Vitamin D also helps increase serum calcium levels which I think most RSS patients need as we've been exposed to chronic elevated steroid levels for large portions of our lives.

With zinc you have to be a little more careful. Any more than around 40mg/day and you run the risk of under-absorbing copper. I amended the The RDA calculation based on my personal circumstances. The RDA says you should replace what you lose of zinc and no more. They assume the primary channels for Zn loss are saliva, sweat, skin shedding (all negligible) and lost epithelial cells in the intestines. These amount to about 10 milligrams a day.

I personally have been shedding an insane amount of skin - I have a very regular shedding cycle where I lose all the skin on my body every two weeks. In the past this has been closer to 5 to 6 days when bad. The skin contains about 7% of the body's total zinc supply, and there is 2.0 to 3.0g of zinc in the average adult. So, 7% * 2.5g = 175mg / 14 days, or 12.5mg/day. Add this to the normal RDA of 10mg to give you a requirement of 22.5mg per day. Double that of the RDA.

I therefore take between 20 and 30 mg per day depending on where I am in the two week cycle. I've been doing this for a long time now and not noticed any adverse effects so I think dosages at these levels are safe. I take this as an A - Z multivitamin with zinc to get an ionic balance between zinc and other transition metals and a zinc and vitamin C only supplement.

I hope this helps - there are ways of calculating all the different nutritional intakes we require, a lot of which I think are in excess of typical values, because of the stress the body is under, we just have to be careful and smart in how we calculate what we need.

Kind regards,
Topical Immunosuppressants / Re: Permanent Damage
« Last post by Bkchu on May 24, 2017, 03:26:28 AM »
Thanks Stinkers. Let me try to take vitamin D with zinc. What's your dosage?
I have been thinking that the skin on my face and hands are permanently damaged by Protopic.. as other parts of my body have healed nicely long time ago, only my face and hands are still wrinkly. That's the areas where I applied Protopic. Now I have hope because of your experience!
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