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Most General Topics / Re: Heavy flaking around mouth & eyebrows..
« Last post by Jnr-rich on June 22, 2017, 03:59:26 PM »
Thanks for the replies every one. Just getting a little impatient with it all now. My hands are also a split and cracked, also missing my thumb print and finger print.  :sad:
Most General Topics / Hockey Player with TSW
« Last post by CleanQueen on June 21, 2017, 08:16:35 PM »
Just heard about this, some hockey players had TSW and one for the Chicago Blackhawks has it now and has to take a whole year off. Of course they don't know it's TSW, they are calling it a mystery illness and when a few had it years ago they called it The Gunk.

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Early Months of TSW / Re: "TSW Advice for GPs" article
« Last post by Marion on June 21, 2017, 05:06:33 PM »
Great article, McBain. Table 1, really sums up TSA symptoms. Good point Camille, I am sorry you had such a negative experience with your MD. When I started withdrawal in Nov. 2013 I also took Dr. Rap.'s article to my MD, as well as to my OBGYN and Dermatologist. Fortunately I experienced very positive  feedback and supportive  treatment. Especially my Gyn was willing to learn all about my condition. To this day, when I go for my yearly check up, he brings interns into the exam room and has me explain TSW or Red Skin Syndrome to them. We pull up photos on the computer and my hope is that these new Dr's. will be more open minded then what you have experienced.
Long Term Vets Still in TSW / Re: 5 1/2 years
« Last post by b00geyman on June 21, 2017, 10:51:44 AM »
I used for 15 years. Nerozone or something like that and a variety of other steriods.  It was 50 times more potent that 1% steriod cream.  For the first four years I got an eye infection almost around the same time of year each year.  This was the first year I didn't get it.  I'm still not 100%, so I still worry that I may have another flare.  But for now things are good.  I don't know if you tried to change your diet at all but who knows if your stuck in a rut maybe try a plant based diet to see what happens.
Early Months of TSW / Re: "TSW Advice for GPs" article
« Last post by McBain23 on June 21, 2017, 06:23:12 AM »
You're welcome Camille.

I think it'll take time but gradually the wider medical world will take notice of RSS/TSW, and articles like these will help - along with us TS Warriors spreading the knowledge :)
Just for Parents and Caregivers / Hawaii Weather
« Last post by BraveC on June 21, 2017, 05:51:48 AM »
We recently went on a vacation to Hawaii in mid May. My son was super itchy when we first got there due to the heat. The first day we were there he was uncomfortable, but continued to improve the whole time we were there. We stayed for around 2 weeks and his skin was clearer than it had ever been by the time we left and he was not that itchy. It was almost like magic. He is now almost 20 months TSW and I am not sure if it was sun, swimming, or badger balm sun screen or a combination of the 3. All I know is that every time we go there he improves. It is almost like it accelerates the process. The only problem is when we returned to cooler northwest temperatures he started to flare again. Some areas have stayed clear from the trip, but he is itchy again and is slowly getting red in his troubled areas.

I am now looking into narrowband UV therapy because of the great improvement, but like I said I am not sure what specifically it is about Hawaii. It is the only place I have been where the improvement happens so quickly. I really hope maybe the therapy will help him to continue to improve.
Long Term Vets Still in TSW / Re: 5 1/2 years
« Last post by Bkchu on June 21, 2017, 12:02:15 AM »
Glad to know that you're doing much better. 5.5 years is a long time. What's your usage of steroid? Did you ever use any imunno cream like Protopic? I am 4.5 years now and still stuck... feeling very discouraged. :(
Long Term Vets Still in TSW / Re: 5 1/2 years
« Last post by SwankyButters on June 20, 2017, 08:50:56 PM »
Thanks for the update and the advice... Glad to see you are all but out...
Long Term Vets Still in TSW / Re: 5 1/2 years
« Last post by Leeboy80 on June 20, 2017, 01:41:39 PM »
Glad to hear you are doing better BMan. 95% sounds great to me right about now! Congrats on a hard endured battle.
Long Term Vets Still in TSW / Re: Over 4 years and a flare
« Last post by Leeboy80 on June 20, 2017, 01:40:14 PM »
Swanky, I did get to see the post and didn't think it was too negative. I'm very sorry to hear you are still in a rough spot. The psychological toll this takes is very real, I have and am  experiencing a lot of the woes you had mentioned, and I'm only at 27 months. Hang in there amigo, I believe there is light at the end of the tunnel for you.
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