May 26, 2014 - Fun with Skin Flakes!

First of all, let's pause and remember those that gave their all for the USA so that we can live as free people.

I'm slowly recovering from the last flare and don't have a lot to share that's new, so I thought I'd share this:

Although I have skin flakes that look like this, this is actually a corn flake! Hahaha! I freaked my daughter out by pretending to pull this off my foot, and she was like "OMG Dad!" when I showed it to her. She almost blew chunks when I popped it into my mouth. Hahaha! Maybe I'm not the best father in the world after all.

Here's some obligatory hand and foot shots. I actually feel better than these look, however the return of the elephant skin is annoying.

I'm in a bit of an experiment right now as my prescription for hydroxyzine ran out last week and the doctor has not renewed it. Plain old ibuprofen seems to help, but it is hard on the liver. I'll take it easy. I still take half an Ambien at night, and it's very effective. It also causes me to have very lucid dreams. I actually had a dream the other night where I realized I was dreaming and could do anything I wanted. I'll keep this family friendly and not say what I did.

May 11, 2014 - A Minor Victory

On the ITSAN forum, member “JellyfishMama” posted the following about a brand new company, Baby Pibu, marketing a skin care line for babies. One of the products, "Rash Relief" contains topical steroids. This really upset me, so I dropped a bunch of 1-star reviews on Amazon, as did other members of ITSAN. Below is JellyfishMama’s original post on the ITSAN forum, followed by an email exchange I had with Baby Pibu.

It’s a good read, but the executive summary is this: From Baby Pibu, “Appreciating the concern of possible misuse and abuse of Baby Pibu Rash Relief despite Baby Pibu's efforts to educate the consumer of how and when to use it, Baby Pibu has taken Rash Relief off the market at this time.”

What will happen over the long term and whether or not Baby Pibu will also eliminate the kits it sells with Rash Relief remains to be seen, but I’ll tell you this much: Baby Pibu is my new hobby.

-------------------------------

JellyfishMama
Semi-Newbie

Baby Pibu Rash Relief: a steroid cream being marketed for babies/newborns
« on: April 16, 2014, 11:13:20 PM »

My mom called me horrified today. She has just recently realized my daughter's TSW is a big deal and a miserable experience and is thus starting to do lots of research. She came across an interview about a new product line called Baby Pibu being touted as created by a mom dermatologist, all-natural and safe for newborn skin. There is a rash cream for eczema, and when my mom hopefully investigated it, she found that is 1% hydrocortisone. Here's their product description:

"Baby Pibu’s™ Rash Relief was specifically formulated with love by a dermatologist-mom with children who suffer from eczema breakouts. It should be used as directed in small doses to treat, nourish and care for inflamed, dry skin and eczema affected areas. You can be confident that this formula is safe and gentle for newborn skin and rest assured knowing that it will soothe their sensitive skin without risk of further irritation."

https://www.babypibu.com/products/treat/rash-relief/

I get that it says to use as directed in small doses, but seriously. Not okay. I can just imagine how many babies are going to end up here on ITSAN the hard way down the road because of this. :-( Ia there anything to be done?

-------------------------------

Product details inquiry from Amazon customer Dave Bupp
From: Dave Bupp
Sent: Thursday, April 17, 2014 9:26 AM
To: Baby Pibu

I just saw that you are selling Baby Pibu Rash Relief with hydrocortisone on Amazon. Please, I beg you, read the review left by Amanda (not me) and educate yourself regarding Topical Steroid Withdrawal on International Topical Steroid Addiction network (itsan dot org) and see what thousands of people, including myself, are going through. To go through this nightmare myself is bad enough, but to see small children and babies suffer through this is heartbreaking. Topical Steroid Withdrawal, AKA Red Skin Syndrome or Steroid Induced Eczema, is a relatively new but very real and growing problem that is affecting thousands of people, including babies. You are literally marketing poison for babies.

-------------------------------

Product details inquiry from Amazon customer Dave Bupp
From: Dave Bupp
Sent: Tuesday, April 29, 2014 8:53 AM
To: Baby Pibu

I wrote to you on April 17th and I have not heard a response. I realized, however, that I did not ask you a question. So, here's the question: Assuming you have seen the Amazon ratings and have educated yourself on topical steroid addiction/withdrawal, do you intend to continue to manufacture, promote, and sell products for babies that contain hydrocortisone steroids?

-------------------------------

Return to Inbox Reply
RE: Product details inquiry from Amazon customer Dave Bupp
From: Baby Pibu
Sent: Wednesday, April 30, 2014 12:18 PM
To: Dave Bupp

Yes. Baby Pibu’s products are developed by a board certified dermatologist and reviewed by a panel of physicians who have extensive education and experience with topical corticosteroids and the potential side effects thereof. It is important to note that eczema is not curable, however symptoms can be treated and precautionary steps can be incorporated into skincare routines to help protect sensitive skin from severe flare ups. In order to safely and effectively treat mild to moderate eczema flare ups, Baby Pibu’s Rash Relief contains a very minimal dosage of a topical corticosteroid called hydrocortisone. Parents can be confident that it is completely safe for sensitive skin when used as directed. Clear instructions for use are noted on the FDA regulated label as well as advisement to consult a physician prior to use. For more information on rash relief, eczema and hydrocortisone please see the posts on the Baby Pibu blog.

-------------------------------

RE: Product details inquiry from Amazon customer Dave Bupp
From: Dave Bupp
Sent: Thursday, May 8, 2014 1:56 PM
To: Baby Pibu

Please read:

http://www.itsan.org/Research_Articles.html

Please visit these blogs from TSW sufferers and/or their children:

http://redskinsyndrome.squarespace.com/
http://steroidredskinsyndrome.blogspot.com/
http://misskittydefeatseczema.blogspot.co.uk/
http://thisitchylife.blogspot.com/
http://klinestopicalsteroidhell.blogspot.com/
http://theboythegreekfireandme.blogspot.com/
http://antisteroid.wordpress.com/
http://scratchymonster.blogspot.com/
http://topicalsteroidaddictionandcure.blogspot.com/
http://odvisnostodkortikosteroidnihmazil.blogspot.com/
http://skinofrose.blogspot.com/
https://healingthered.wordpress.com/
http://www.eczemancipated.com/
http://laleizel.wordpress.com/
http://pinklikeabeacon.wordpress.com/
http://curingredskinsyndrome.blogspot.com/
http://topicalsteroidwithdrawal.blogspot.com/
http://eczemaillusion.blogspot.com/
http://iowatsw.blogspot.com
http://tomatoskingirl.wordpress.com/
http://eczemaexcellence.wordpress.com/
http://ihatesteroids.blogspot.co.uk/
http://withdrawalofsteroidcreams.blogspot.com.au/
http://freshoffthebus.wordpress.com/
http://www.reddit.com/r/TS_Withdrawal/wiki/blogs
http://www.livingwitheczemaiscruel.tumblr.com
http://andtheearthshook.blogspot.ca/
http://kccd.wordpress.com
http://asteroidfreelife.blogspot.com/
http://journey-to-comfort-and-health.tumblr.com/
http://ajourneytohealingfromtopicalsteroids.blogspot.com/
http://eczemawithdrawal.wordpress.com/
http://greenteachocbanana.tumblr.com/
http://edenskin.blogspot.com/
http://amandatsw.blogspot.com/
http://www.35yearsofhell.blogspot.co.uk/
http://steroidfreeskin.blogspot.com/
http://tsweczema.wordpress.com/
http://eczema-suffers.tumblr.com/
http://i-have-eczema.blogspot.co.uk/
http://healthyskinjourney.blogspot.com/
http://itchyeczemalife.blogspot.de/
http://www.stoppingtopicalsteroids.blogspot.com/
http://topicalsteriodwithdrawl.blogspot.com/?m=1
http://willissnapshots.blogspot.com/
http://ateenwitheczema.blogspot.com/
http://www.itchyred.blogspot.com/
http://oregene92.wordpress.com/
http://eczemajourney.wordpress.com/
http://dreamingofanitchfreelife.blogspot.hk/
http://isaiahquinn.blogspot.com/
http://www.davestsw.blogspot.com/
http://keeganstopicalsteroidaddiction.blogspot.com/
http://justglowingwithhealth.com/is-your-child-suffering-from-topical-steroid-induced-eczema/
http://ekzemamalaysia.blogspot.com/2013_07_01_archive.html
http://life-with-eczema.tumblr.com/
http://estherminusts.wordpress.com/
http://mylittleredwarrior.wordpress.com/
http://warriorgirlbeatstopicalsteroid.blogspot.com/
http://fragilefacade.wordpress.com/
http://itchyred.blogspot.com/
http://skinmisbehaving.com/
http://atopiclady.wordpress.com/
http://catrstephens.blogspot.com/
http://steroidinducedmess.blogspot.com/
http://derekissteroidfree.wordpress.com/
http://ozzylovelots.blogspot.com.au/
http://thethickskin.blogspot.com/
http://lemonofftopicalsteroids.tumblr.com/

Please reconsider products for babies with steroids.

-------------------------------

RE: Product details inquiry from Amazon customer Dave Bupp
From: Baby Pibu
Sent: Sunday, May 11, 2014 2:30 PM
To: Dave Bupp

Baby Pibu sincerely empathizes with your skin condition and others belonging to ITSAN. We appreciate your introduction of ITSAN to us. Dr. Amy has personally treated patients such as you and understands what you are going through. Baby Pibu and Dr. Amy firmly do not advocate the chronic use of topical corticosteroids for treating eczema, mild to severe. Baby Pibu and Dr. Amy's mission is to educate new parents on common skin conditions and help them recognize, prevent/protect, and treat these common skin conditions safely at home. Dr. Amy has personally touched base with and talked with Dr. Rappaport in the past week. They had a nice discussion dermatologist to dermatologist involving the concerns of misuse of a product such as Rash Relief. Dr. Amy conveyed Baby Pibu's mission to Dr. Rappaport and appreciated the mission of ITSAN from Dr. Rappaport. Dr. Amy and Dr. Rappaport will continue discussions as needed. Appreciating the concern of possible misuse and abuse of Baby Pibu Rash Relief despite Baby Pibu's efforts to educate the consumer of how and when to use it, Baby Pibu has taken Rash Relief off the market at this time. Baby Pibu is in discussion with medical groups and will seek further medical advice on the eczema kit. The instruction card in the eczema kit has been found to be extremely useful in educating parents/consumers about eczema and the importance of daily care and protecting the skin. Preventing and treating eczema with non-steroid ointments such as Baby Pibu hydrating ointment are advocated as most important. The card also details corticosteroids and warns of the side effects of them as well. Consumers are instructed to consult with a physician prior to using on any child under the age of 2 yo and instructs to limit use to 2-3 days. Baby Pibu hopes you and ITSAN find victory in the end of individual sale of Rash Relief. Baby Pibu also hopes you will stop posting negative comments to its paying customers whom have no personal connection with Baby Pibu. Believe it or not, Baby Pibu has its followers who believe Baby Pibu and Dr. Amy is trying to do some good through skin care education.

-------------------------------

[EDIT 5/14/13:30: Added the following response]

RE: Product details inquiry from Amazon customer Dave Bupp
From: Dave Bupp)
Sent: Monday, May 12, 2014 8:38 AM
To: Baby Pibu

Thank you for your concern and prompt action regarding removing Baby Pibu Rash Relief from the market, at least in its standalone version. The fact that Dr. Amy and Dr. Rapaport are having discussions is great news. I believe that Baby Pibu truly cares about its precious tiny customers and that your new and continued awareness of topical steroid withdrawal will have a positive impact on their future.

I want to clarify a couple things. First, please understand that although I am a proud member of ITSAN, I do not represent it in any other way. The action taken by me and other members on Amazon was of our own accord and should not be assumed to be representative of ITSAN.

Second, I stand by my reviews and comments on Amazon. Whether as a result of Baby Pibu employee’s direction or not, the barrage of 5-star reviews beginning on May 8 was a stunning example of opinion spamming. Although I will continue to respond to those reviews and comments as I see necessary, I will do so with the newly found respect that I have for Baby Pibu and its actions.

Finally, and I know this will come as no surprise, I will not be satisfied until topical Steroids are removed from all baby care products from any company, including Baby Pibu Rash Relief being part of the “Pibu’s Soothing Eczema Care Kit” and the “Baby Pibu Newborn Essentials Skincare Kit”. My assumption is that the standalone Rash Relief product was the easiest to remove from the market and that repurposing and repackaging of kits and gift sets may take some time.

I am hopeful that Baby Pibu’s awareness of topical steroid withdrawal and continued communication with experts such as Dr. Rapaport and “TSW Warriors” such as us on ITSAN will result in a new direction for Baby Pibu that will be of great benefit to your company and the future of babies suffering with eczema.

Thanks and kind regards from Texas,
Dave

April 30, 2014 - Here We Go Again*

I think I am starting Flare #3. Oh joy. What appears to be pre-TSW eczema is covering most of my arms and legs and I just now noticed some elephant skin action around the knees. Itching has remained insane, especially feet and legs, but now I get wet everywhere if and when I scratch. Crap. Oh well, just one more bump in the road to recovery!

It could be stress related. The last few weeks have been a little rough. I miss my mom.

The jury is still out on light therapy. It’s been two months, but I just don’t know. That’s the trouble with TSW… it’s so dynamic you never know what is cause and what is effect. Even though I am struggling, who’s to say I wouldn’t be struggling much more without light therapy? I think the itching is less on the nights I do the therapy, so I am sticking with it.

* I’ve got this line from Michelle Chamuel’s “In My Head” stuck, well, in my head. The song relates well to TSW and I get verklempt when I listen to it.

April 5, 2014 - A Thousand Words

March 25, 2014 - I Have Hope In My Soul

Or as my Mom used to say, “I have soap in my hole!” Speaking of my Mom, my wife and I are hoping to finally get up to Seattle this weekend and see her. I need a hug!

The GOOD:

I am better [cautious exclamation point]. I at least feel as good as I did before the last ginormous flare. A few things have happened since I last posted.

First, of course, is time. From all I can gather about TSW, the one and only thing that is sure to bring healing is time. Lots of it, which I happen to have. Good thing, as I am expecting at least another year of this

Second, is the light therapy that I have been doing for a month now. I started out at 20 seconds per side and have worked my way up to 90 seconds. I hear it takes about a month for good things to start happening, and although I can’t know for sure how much it has helped, if any, I think that it has. That’s half the battle.

The third is that I am moisturizing much less and have switched from Vaseline to sunflower oil. I’m not really on the “MW” bandwagon, I simply feel that moisturizing is not needed as much. Also, I’ve read some pretty nasty things about petrolatum and some really good things about sunflower oil, so I am giving it a shot. I don’t use much; basically to replenish oils lost during my daily shower and on my hands after using and washing them. My hands still end up with cracks at the end of the day, so at night I oil ‘em up, put on cotton gloves, then disposable vinyl gloves over them. The cotton helps my hands breath better, so in the morning they aren’t all white and sweaty like they were with just vinyl gloves, just pale, damp, and, well, better. Thanks to Dan, by the way, for advice on cotton gloves and his research regarding petrolatum.

The bad:

My ankles and feet are still pretty bad. And they hurt. The bottoms of my feet are about half covered with what looks like good ol’ conventional eczema.

Although my itching is less primarily because of brute will-power, if I succumb and scratch the explosion of almost unbelievably intense itching is spectacular, especially on my lower legs. I keep saying this, but it’s true… only TSW warriors can understand what this is like.

I am still using Ambien, but only half a pill. I will probably try going without when the bottle runs out, which will be in a week or so. Ambien has been extremely effective for me, and the sleep it provides probably should get some credit for my improvement, which is why it will be hard to give up. I am also still taking quite a bit of antihistamine hydroxyzine (Atarax), probably 5 or 6 25mg pills per day.

Lots of flaking! I have had to blow skin flakes off the keyboard to see the difference between the comma and period keys, now its the "M" and "N" keys.

Observations

Since starting TSW, I have noticed that my symptoms are symmetrical. In the good ol’ days of simply fighting eczema, I would get it, say, on one finger or on one eyelid. Now, everything I have is virtually identical left to right. I always post pictures of only my right side, but the left side is virtually the same. I wonder if this is a hallmark of TSW.

I have also noticed that I seem to be healing top to bottom. My neck and shoulders, once a trouble area, are now almost normal. The insane itching on my chest moved to my stomach, then thighs, then calves, which is where it is centered now. I am maintaining my belief that my body is basically emptying itself out of the symptoms of TSW. Okay, my hands are a bit of an exception, but then they are always getting into things.

Bottom Line: I have soap in my hole!

Homeopathy

A slight diversion. Someone over on the ITSAN forum asked about homeopathic psorinum, and I responded with the following:

One of my hobbies is skepticism and as such I am familiar with homeopathy (not to be confused with naturopathy). I encourage anyone considering homeopathy as something to be used in place of conventional medicine to do some neutral research. A good starting place would be to read the entire naturopathy article in Wikipedia.

I am a big fan of skeptic James Randi, a former magician that has turned into an investigator of the paranormal and pseudo-science. He is known for the Million Dollar Paranormal Challenge where he will give $1,000,000 to anyone that can prove paranormal anything under controlled conditions agreed to by both parties. He hasn’t paid anyone.

He is also known for his stance against homeopathy and one of the stunts that he pulls is to take massive overdoses of homeopathic “remedies” such as sleeping pills. Nothing happens because true homeopathic products rely solely on one thing: the placebo effect. That said, I would not recommend doing this as many products labelled homeopathic contain actual ingredients.

What’s ironic about all this, and one reason I posted here, is that if I were the eczema laden child of parents that believed in homeopathy and they gave me homeopathic remedies instead of conventional medication, I would not be going through the living hell of TSW. It just so happens that the cure for what ails us is to do nothing at all. Homeopathic remedies do this quite well.

I added the following one day later, after a couple of responses from those with positive homeopathic remedy experiences:

Please let me know if my posts are inappropriate or in violation of ITSAN rules or their intent, as I love and respect ITSAN dearly and do not want to jeopardize my relationship with it in any way. I will post this on my blog too if anyone would like to discuss this further there.

If okay, I would like to add a couple thoughts. First, for anyone that has had a positive experience with homeopathic remedies PLEASE read the entire article in Wikipedia and understand the 200 year old principals of how homeopathy is supposed to work before endorsing it. Please. I refer to Wikipedia because although not perfect by any means, it is the most neutral source I know and has plenty of verified references. The internet is bloated with BS, including convincing sites promoting homeopathy. If you dig deep, however, you will find there is virtually no peer-reviewed double-blind trials that support homeopathic principals. None.

Some homeopathic remedies actually work not because of the homeopathic ingredients, but because the inactive ingredients provide relief. Eye drops and nose drops are perfect examples because you could literally use plain water or saline and obtain positive results. Also, some homeopathic remedies include conventional medicine or naturopathic ingredients that does actually work. That reminds me, do not get “homeopathy” and “naturopathy” confused. They are different in the most fundamental ways, yet many people do know the difference and use the terms interchangeably. I was having a discussion with the manager of my local CVS, and even she didn’t know the difference. I was starting to get upset that CVS sells homeopathic remedies when I realized that behind the front counter is a wall of cigarettes. They only care about our wallets, not our health.

Most homeopathic remedies, especially those for children, are for conditions that are temporary, such as colds, that go away anyway. “Tag Away” as seen on TV is an exception to this and the TV ads are convincing. Yet look for neutral reviews of Tag Away, such as on Amazon, and you’ll find that the product simply does not work at all. And good luck getting your money back.

Anyway, I could go on and on, but there’s really only two things to remember:
1. Do not confuse homeopathy and naturopathy.
2. Understand how a product or method supposedly works before using or endorsing it.

I feel better now.

March 10 - Into Month Nine

The GOOD:

Hands are much better. If they become cracked I have found that wearing vinyl gloves for the night (without any moisturizer) will quickly calm them down.

The BAD:

I have been on phototherapy for 2 weeks and was really hopeful it would make a difference. Nothing yet. I am thinking that it will just take a bit more time. I started out a a very low dose (20 seconds) and am increasing the dose by 15% each time. I have yet to get to a point where I show signs of turning red, and my understanding is that I need to be at or close to that point for positive effects to show up. Onward.

My legs and feet continue to be the worst, with insane itching and pain after I give in and scratch.