Author Topic: What happens when rash spreads to entire body?  (Read 3697 times)

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Offline yabuki

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What happens when rash spreads to entire body?
« on: March 10, 2015, 11:54:25 PM »
My rashes are spreading to my ankles and feet now, where I never had before. It is slowly spreading to all parts of the body. I would say that I am probably 95% covered now.

A question for those of you who have gone through this.

When rashes spread everywhere, to the point where it can't spread anywhere else, how long does it stay that way? Couple months? A year?

Just curious, thanks.
TSW @ 6/2014
20+ years of TS (5 years of super-high potency clobetasol)

Offline Andrew B.

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Re: What happens when rash spreads to entire body?
« Reply #1 on: March 11, 2015, 12:21:45 AM »
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When rashes spread everywhere, to the point where it can't spread anywhere else, how long does it stay that way? Couple months? A year?

It happened to me at the 3 month mark and the 11 month mark. In my experience it took about 6-7 weeks to peak and another 6-7 weeks to clear up.

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What happens when rash spreads to entire body?

I wish I knew the mechanics behind a full body flare, it would be nice to know what happens to our bodies
« Last Edit: March 11, 2015, 12:24:07 AM by Andrew B. »
Used TCS for 15 years before starting TSW in early 2013.


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Offline Pam212

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Re: What happens when rash spreads to entire body?
« Reply #2 on: March 11, 2015, 12:57:06 AM »
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My rashes are spreading to my ankles and feet now, where I never had before. It is slowly spreading to all parts of the body. I would say that I am probably 95% covered now.

A question for those of you who have gone through this.

When rashes spread everywhere, to the point where it can't spread anywhere else, how long does it stay that way? Couple months? A year?

Just curious, thanks.

Hi, I'm in month 8 and pretty much full body also.  It started spreading to my ankles and feet about a month ago and now -- as we communicated in another post -- with the feet and ankles affected, it's very difficult to walk. I wish we knew how long we'd be in a certain phase, but it looks like everybody has a different timeline.

Offline yabuki

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Re: What happens when rash spreads to entire body?
« Reply #3 on: March 11, 2015, 02:01:45 AM »
Thanks for the feedback.

Based on this topic + searching other topics, it looks like most people are in the full-body rash stage for around 1-4 months...

As the rash spreads, it really does feel like the body is detoxing itself. It's as if for each new rash spot, it is telling the body that it's repairing the nerves underneath (that spot).

I wish I could know more about all the internal things going on during these "stages".
TSW @ 6/2014
20+ years of TS (5 years of super-high potency clobetasol)

Offline carmela_v

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Re: What happens when rash spreads to entire body?
« Reply #4 on: March 11, 2015, 03:35:19 AM »
Hi!

it spread to pretty much full body at around 5 months mark, and it has taken 4 months to start calming down and now at almost 10 months I have long areas clear ( the ones that first got affected, torso, belly, lower back, hips...) and have the worst in the latest areas to be affecetd ( hands, wrists, ankles...).

good healing everyone.
Diagnosed with Atopic Dermatitis at around age 13, used different creams or potencies sporadically during the years. My skin was never a real burden. Things got worse at around age 26, struggled on&off during approximately 4 years. TSW Started May13th, 2014.

Offline marceline

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Re: What happens when rash spreads to entire body?
« Reply #5 on: March 11, 2015, 12:34:50 PM »
I am going for 1 year and i have had at various times full body flares  up to  my neck and my eyelids . Just come out of a major flare this week gone . Were in summer and the days are so hot and humid i was wondering if that also adds irritation to the skin .

I really wish that i am not going to have this for the next 2 years .

Offline Pam212

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Re: What happens when rash spreads to entire body?
« Reply #6 on: March 12, 2015, 01:30:13 AM »
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Thanks for the feedback.

Based on this topic + searching other topics, it looks like most people are in the full-body rash stage for around 1-4 months...

As the rash spreads, it really does feel like the body is detoxing itself. It's as if for each new rash spot, it is telling the body that it's repairing the nerves underneath (that spot).

I wish I could know more about all the internal things going on during these "stages".

I also wonder what's going on internally.  If the skin is damaged, are any other organs damaged?  I think it's a good idea to get regular blood tests. 

Do we have proof anyplace that for each new rash, the body is repairing the nerves underneath?  I've been a believer but am starting to wonder. 

Offline Andrew B.

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Re: What happens when rash spreads to entire body?
« Reply #7 on: March 12, 2015, 03:54:25 AM »
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I also wonder what's going on internally.  If the skin is damaged, are any other organs damaged?  I think it's a good idea to get regular blood tests. 

Do we have proof anyplace that for each new rash, the body is repairing the nerves underneath?  I've been a believer but am starting to wonder.

It has nothing to do with repairing nerves, its different parts of the immune system going crazy. Dr. Fukaya describes full body flares as a "cytokine storm like" phenomenon, he says in his research there are similarities.

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Used TCS for 15 years before starting TSW in early 2013.


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Offline Pam212

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Re: What happens when rash spreads to entire body?
« Reply #8 on: March 12, 2015, 11:39:13 PM »
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[

It has nothing to do with repairing nerves, its different parts of the immune system going crazy. Dr. Fukaya describes full body flares as a "cytokine storm like" phenomenon, he says in his research there are similarities.

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[/quote]

Hi Andrew, You really know your stuff.  Thanks for sending the links.  It's a little over my head but I get the general idea and will show it to my dr next time I go.

I'm curious -- you've been off TS for 2 years.  What's your current status?   Best,  Pam

Offline Andrew B.

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Re: What happens when rash spreads to entire body?
« Reply #9 on: March 13, 2015, 01:49:56 AM »
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I'm curious -- you've been off TS for 2 years.  What's your current status?

Hi Pam, yes I have been off steroids for ~25 months. Most of my body is clear, I still have very bad spots on my hands, feet, face, and neck. I am in the dupilumab trial and since I started getting drug (or placebo) my hands and feet have gotten better. My neck is still pretty bad, and my face has been doing a red and shed for about 7 weeks. If I had to guesstimate I'd say 70% back to normal, maybe at month 36 I will be 85% back to normal, stay tuned...
Used TCS for 15 years before starting TSW in early 2013.


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Offline Stef

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Re: What happens when rash spreads to entire body?
« Reply #10 on: March 16, 2015, 10:19:55 PM »
For me it took about 4 month before the rash had spread fully body, the only thing not affected were the end tips of my toes .. looked kinda funny actually, with everything red and the toes white.

I had the full body red skin without any break though for quite a long time with tough flares on top of my already red skin. I would say it lasted around 1 year before it started going down, I still have some trouble spots left being pinkish but it's way better all in all.
Used TS sporadically on arms, legs and face for 18 years -- going through withdrawal symptoms since Dec. 2012 (switched to OTC Hydrocortisone) and completely stopping in May 2013 -- Full body TSW.

Offline Pam212

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Re: What happens when rash spreads to entire body?
« Reply #11 on: March 17, 2015, 02:05:08 AM »
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I'm curious -- you've been off TS for 2 years.  What's your current status?

Hi Pam, yes I have been off steroids for ~25 months. Most of my body is clear, I still have very bad spots on my hands, feet, face, and neck. I am in the dupilumab trial and since I started getting drug (or placebo) my hands and feet have gotten better. My neck is still pretty bad, and my face has been doing a red and shed for about 7 weeks. If I had to guesstimate I'd say 70% back to normal, maybe at month 36 I will be 85% back to normal, stay tuned...
Andrew,  Sorry your face is still red and shedding. I'm glad your hands and feet are better.  My hands and feet are worsening and I worry about getting infections because I live in NY and am exposed to many people.  It's also become difficult wearing shoes or sneakers because of the spreading rash.  Do you use moisturizer or emollient on your neck?  If so, what do you use?  I use Aquaphor and others but everything dries up after a few minutes.  I know you're very knowledgeable on TSW. Do you know what causes that?  Thanks.  Pam

Offline Emily

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Re: What happens when rash spreads to entire body?
« Reply #12 on: March 17, 2015, 06:18:33 PM »
At month six, my rashes went haywire and spread throughout my body. It took about 3-4 months to recover and have my skin originate back to its normal self. About eighteen-nineteen months in, it started happening again, and I'm still dealing with the aftereffects.
"God gives his hardest battles to his strongest warriors."

Usage of topical steroids: About 1.5-2 years using 0.2% Hydrocortisone very sporadically
Time into withdrawal: 33 months

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