Topical Steroid Withdrawal Resource and Guide Page

Written this piece on Topical Steroid Withdrawal Resource Guide . Do take a look and share your comments and feedback in the page!

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We have moved to Saynototopicalsteroids.com! New domain!

Dear readers,

Say No to Topical Steroids has officially moved to http://saynototopicalsteroids.com !

All new updates will be posted in the new site from today onwards. For those who have my site in your blogrolls, I ask for the favor of updating it to the new site address. Thank you very much!

As the new site is still a work in progress, do drop me a note if there are any links that are not working. Bloggers who are interested to be included in the blogroll drop me a note too!

Cheers to a cleaner interface, better SEO, and increased awareness on TSW!

Clocking miles, running, TSW and Marathon

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Thought about this during my long run yesterday. I always loved running. It’s a great avenue to destress as well as to generate ideas. Your monkey brain don’t just shut off during such activities.

TSW is similar to the process of training and completion of a Marathon.

You will have to keep running and running for long distances during training, sometimes with no end in sight. Distances keep getting longer, and you just keep going. Every minute you think of how much longer will it be, before it ends. But before you get there, you just have to keep going.

The road is uneven. You will run up slopes, wind in your face, uneven footing or gravel roads that make you uncomfortable. They make you question why you are actually doing this. You will suffer at certain legs of the race.

Then, there are periods where the road is great, scenery is awesome, a slight downslope which you can coast. You get out of the woods from suffering, and get into a zone. You are coasting, enjoying the slight break the terrain has offered.

And then you suffer again, rinse and repeat.

You will see people dropping out of the race, giving up. You will see people driving ahead faster than you. Sometimes you see moments of encouragement, when runners help out one another in offering to pace you, giving you a pat on the back, giving you a race gel to boost your energy and telling you to keep going. Sometimes you won’t get that kind of encouragement through long stretches.

You want to be the person to finish. Not the one to be giving up, when the road gets tough. Not the one who fails to anticipate future difficulties when the road gets easier for you. Not the one who often needs encouragement in order to finish the task.

It is how much you want to finish, your dogged and determined character to see it through. One step at a time. One mile at a time.

Before you know it, you complete. Your body will definitely be worse off compared to how it was when you started. But you will look back and be proud of the process you have achieved.

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I’ve spoken to many who are deep in the throngs of TSW. They are miserable. They can’t see the light at the end of the tunnel. Some are suicidal. Being dead is better than being alive.

It is understandable. I’ve been through it.

All I can offer is to help shift their mindset. Stop seeing the light at the end of the tunnel. You will see it eventually, when you get there. For now, take one step at a time. Improve one bit, not matter how small, daily. It is painful, nobody said it was easy for TSW. Just keep going.

Trust me. You will be a completely different person when you reach the end of the tunnel. And then, you will be thankful that TSW was a part of your life and you wouldn’t exchange it for anything in the world.

Hello Darkness my old friend,

I’ve come to talk to you again.

Was researching and compiling risk disclosure information and decide to relook at some of my topical steroids prescribed to me over the course of past 2 years. I’ve thrown plenty away, somehow these survived and I’m glad.

TSgrouppic4

The nightmares of tubes and different prescriptions. Nothing seem to work.

prescription leaflets5

I wonder how effective these prescription leaflets are. How many people actually read them? How detailed are their risk disclosures? My book plans to include these information so that people can relate how much or how little is disclosed in terms of risks.

My old friend indeed. Probably one that made me stronger, after a horrible horrible episode.

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PS: I’ve created a FB page titled “Say No to Topical Steroids” to facilitate information sharing. Do “like” the page on the right side bar so as to get updates from this blog and more. I’d very often post relevant and interesting links that I curate in the FB page as it would be easier. Some of these links I’ve curated has been stashed in my bookmarks folder for too long, and the FB page is such a good platform for me to share them quickly.

To my readers, thank you for all the support and I do look forward to join in the discussions on the page!

Probiotics Good? + Information Censorship.

I posted this Probiotic Bacteria Don’t Make Eczema Better, And May Have Side Effects, Study Shows in a Facebook Group for discussion on potential iatrogenic effects of probiotics supplement as information for the group members to read and assess.

The post was removed from the group very quickly. Not surprising from a group that actively promotes their product, a brand of probiotics, to its members.

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Thoughts:

1) I’m neither against, nor supportive of probiotic supplementation. I’ve used them previously, and didn’t think that they helped. I do remember having more bowel irritations as suggested by the study.

2) On the issue of censorship, it is interesting that (I was informed) the post is removed because I was rude. All I did was to post information so that people can assess and judge whether there is some truth or not in such a study. I’d wish people look at the information, instead of forming unwarranted opinions of my character in sharing the information. My intent has always been clear, to post information of all sorts, so that they could hopefully, in some way or another, be helpful.

3) If the probiotics, especially those promoted in the FB group, are that helpful, such information being available to the readers won’t make a dent. If a product really works, the admins and the sellers should feel secure enough to continue selling despite the availability of such information being posted. People who have benefited from the product will speak out. People will discredit the study. People share their experiences so that more people can get a better value judgement out of this study. Are the admins really that insecure of their product that they need to actively remove such neutral information from their group?

4) Good access to quality information is good support. I learn more about my skin by reading things people posted, accessing information available on the internet, in books, in listening other’s experience. By removal of information, the admins are potentially removing a source of helpful knowledge to members of the group. This knowledge could help them directly or indirectly in the course of TSW recovery.

5) I only have one question for the admins – that presumably, if the study above is indeed true, (it may not even be required to be totally true, even if its partially true), would they recommend their product in good faith to the readers of the group? Especially a product that can potentially cause infections (not good with TSW) and gut problems (leaky gut anyone?). This is for them to answer, not me. People with different moral thresholds will respond differently.

How can we know, what we know?

Question time:

How do we know the flares we experience during TSW are fully attributed to topical steroid withdrawal, and not other factors such as moisturizer use, diet, environment, etc?

I post this question because when people stop using moisturizers, they enter a flare or regression of skin condition. When this happens, do we attribute the bad skin experience as TSW or more logically, an experience resulted from the stopping of moisturizers?

Likewise, when we take certain supplements and suddenly we enter a flare. Is this again, TSW, or due to the intake of those supplements?

In the course of TSW, many people, myself including, go all out and try all sorts of stuff, supplements all at once. At the end of the day, we end up none the wiser.

To know if something is really effective, you have to change one variable at a time, and experiment it for a significant period to see if there are any possible good effects due to the input of the variable.

This is the problem with supplements. Even if they have any possible benefits, they take a significant time to show. And this is precisely the reason why the supplement industry is a huge one, and those who sell them make money based on less than rigorous scientific data. First, you will want those research subjects tested on a long timeframe, something that is rarely done prior to product release (the funding and time and effort will be tremendous). Second, you have to ensure all the positive effects are attributed to this particular supplement over THAT long time frame, again, which is something that is impossible because test subjects are subjected to other variables during this time frame.

I’ve got an intuitive feeling that the supplementation business is a big scam. There might probably be some benefits in certain supplementation for certain groups of people who are tested deficient in certain areas. However, for the average person, supplementation may not do much and may even have possible iatrogenic properties.

I’ve stopped all supplementation as a trial and experienced almost no drastic change in my life. The opposite, when I was taking all sorts of supplementations, made my skin flares worse. (probably due to allergies to certain compounds, hence the iatrogenics).

Unless you have a perfect biochemical view of your body and can detect the exact changes that these supplement bring to your body, there is no way to quantify the effects and to make a convincing argument that this “X supplement” works because it “worked” for you.

The effective method to knowing what works or what doesnt, what is true and what is not, is thru the method of removal, not addition. Via negativa. You remove something in your life and detect the changes, one by one. When you trial by error via addition, especially to a complex non-linear entity like our bodies, there is absolutely no way to prove something has a good or bad effect.

A simple example of via negativa is: When I remove the source of sunlight from plants, they wilt and die. We can be very clear on the effect of removal. To the same plant in presence of sunlight, when we remove their water source, they wilt and die. We don’t do the opposite to prove the same statements. Statements that show proof via positiva is less conclusive that those via negativa.

Next time someone tells you so and so supplement worked for me, give less credit to the statement. Whereas, when someone tells you that a removal of certain stuff (such as moisturizers or certain diet, food type or supplements), pay more attention due to the concept of via negativa.

Reader “Teapot” MW Experience

This post is an extraction of Teapot’s comment on her MW experience in the post Want to heal? Listen to music. + Skin updates.

Key comments from her experience are:

I posted a comment a while back on MW and your experience, asking if you think I could “pilot” MW on part of my body as a test, rather than go cold turkey and quit moisturizers all at once.

“Well I am happy to report that it has worked! I really think you are on to something here with the MW/quitting moisturizers. I started with my lower legs as they were completely healed from eczema and kind of out of my focus area in terms of fighting the itch/scratch cycle. The first few days were difficult, strange, irritating, but not desperately itchy or anything. Just a bit weird. I mean, I have been moisturizing after a shower, head-to-toe, every day of my life since I was 15 years old! I am now 34. That is intense.

Anyway, gradually I added in other body parts as I progressed–forearms, upper legs, upper arms etc. Now all I moisturize is my face, which seems to be a special case of hell. I have adjusted my diet which has returned me to a somewhat normal face, but I am yet to do away with moisturizer there just yet. I do find I use way less than I used to.

It has now been about a month or even longer for my lower legs and I wanted to share my experience with you to add my support to your theories. I agree my skin feels tougher and more resistant. Even though my skin can be on the dry side (winter in the Canadian Prairies, so pretty normal around here), it is no longer uncomfortable dry, and if I do scratch, the result is not catastrophic. It is more like when a normal person scratches their arm–they do not bleed or swell up. To combat dryness I bought a fancy humidifier and I crank it up before I go to bed at night so the room is nice and humid.”

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Thoughts:

Apart from her MW experience, what is interesting is that she has also tapered down and weaned off from TS instead of going cold turkey (something that most of us do). I don’t think this is necessarily a bad idea, given that the body always adapts subjected to the increasing/decreasing external stimuli we apply. It is the same for MW, in my opinion. Instead of going cold turkey (which is effective/quick with a higher level of sacrifice), you can opt to taper down (slower/longer with a lower level of pain and discomfort).

Either ways, the reporting of the same experiences shared by many who have opted MW while treating their TSW only provided strong empirical EVIDENCE that MW works. You get comfort, stronger skin, less pain, in exchange for a period of MW symptoms (which to some may not be that difficult at all).

There is no place for moisturizers in the world. There is no requirement. We live in a consumerism, capitalistic society with companies and people coming up with plenty of products that you don’t need. When you listen to the saying “moisturizing is important for eczema patients”, what you are hearing is just a narrative, not the truth.

Your body is born to regulate itself, and it is more than capable of doing so.

Want to heal? Listen to music. + Skin updates.

Link: When patients have ‘music emergencies’

There is scientific research to back up the idea that music has healing properties. A 2013 analysis by Daniel Levitin, a prominent psychologist who studies the neuroscience of music at McGill University in Montreal, and his colleagues highlighted a variety of evidence: for instance, one study showed music’s anti-anxiety properties, another found music was associated with higher levels of immunoglobin A, an antibody linked to immunity.

The brain’s reward center responds to music — a brain structure called the striatum releases the chemical dopamine, associated with pleasure. Food and sex also have this effect. The dopamine rush could even be comparable to methamphetamines, Robert Zatorre, professor of neurology and neurosurgery at Montreal Neurological Institute, told CNN last year.

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Thoughts:

When I was struggling with my flares, my whole day was filled with negative thoughts/emotions as well as physical pain. If something could help to reduce the negative issues, it will go a long way to heal as your mind and energy could be directed to more fruitful ventures (such as, thinking about critical stuff of your healing journeys, what can you do to heal faster etc).

Imagine listening to nice music for a whole day, it is hard to get angry/pissed off at yourself of your own condition or anyone.

Imagine listening music for a whole week, you will have channeled 1 week of negative energy away. You will probably find yourself sleeping better. You will probably see more positives in your healing. You will probably experience a positive placebo effect.

Just go to youtube. Youtube will “cure” you. =)

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Skin updates:

Nothing special so far. Minor irritations,dryness and scratching as usual, nothing that impedes my life. Have recently cleared my GMAT for my applications for potential business schools, and am currently working out to regain fitness for soccer (after my little back injury).

There is some truth that when people get better, they want to talk less about this TSW issue. When I edit fellow sufferers interviews for my book, it feels painful and difficult for me to read through their experiences as I can literally re-live those thru mine. I’ve read that humans have a high capacity to store away negative outcomes/situations. I can attest that it is true. Memories of my horrid flares are still there but fading. The good takeaway I get is that I know what is my highest threshold of pain tolerance, and difficult stuff doesn’t faze me anymore.

So ride on. YOLO. Put your mind and energies to the best outcome you can everyday.

MW info + Constructive Criticism of ITSAN Again

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The intent of this post is as follows:

1) Spreading info on MW to public (always one of my core objectives)

2) Expose poor logical and critical thinking by ITSAN founder – Kelly Palace and her crew of volunteer moderators.

3) Question their authority in deciding “What is best for TSW sufferers”.

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A TSW friend directed me to this link in ITSAN General Forums, titled:

Wahay to NO Moisturiser!!! :)….Unbelievable

A read of the entire post shows similar, repeated reports mentioned by myself and fellow MW advocates:

1) Massive skin shedding during initial period (a withdrawal period), a difficult/painful process to some, not all.

2) Increased comfort and pain tolerance after withdrawal period.

3) Strengthening of skin layer, less susceptible to breaks even when scratching.

Do pay the thread a visit for more info.

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Now, on the topic of openness and ITSAN stance on no-moisturizing, I’m glad they have changed their approach from recommending moisturizing extensively in their Q&A page to one that is more nuanced. (I believe much of the changes stem from the awesome work put in by fellow MW advocates. It appears ITSAN read the blogs intently.) It appears they have started to see that people are really recovering from MW and that there could be potential iatrogenics from moisturizing. As non-committal as they are, they label it as a personal choice. Yet some posts in the above thread are pretty enlightening.

From member JT:

“I find it odd that there are so many people (me included) who swear that MW has helped them more than anything else during tsw, yet I recently received a mass email from itsan basically discouraging any talk about it. They implied that discussions (on this forum) on MW are akin to discussions about GMO’s and cancer. According to them, moisturizer has nothing to do with either the cause or cure of tsw. That fact is, nobody has completely figured out the exact science of this thing yet, and the only thing we have to go on is each others experiences.”

I don’t have to say anything much about the bolded part (other than the obvious attempt in limiting information flow), but the important point from me is that – We do not know the iatrogenics of moisturizing. (The upsides – improvement of skin, is good. The downsides – people have reported irritation, allergies. Research has shown to slow down keratin proliferation etc.) The more we do not know about the downsides, the less eager we should to recommend it to others. As for MW, there is no downside (technically yes, there is, if you decide to MW after a long period of moisturizing, you will suffer a withdrawal period). Following that, there are no iatrogenics to talk about.

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Then founder KP says:

“I personally completely disagree with the 50/50 use of MW for healing.  Having watched people heal for 5 years here, I would say 90 percent have used moisturizers.  No, in fact, let me correct that……I personally know of zero people that have healed without Moisturizers.  If someone in our network has healed without moisturizers I would like them to email me or post your success story with before and after pictures and be completely healed.  And yet, ITSAN and I personally are still open to the concept.”

Firstly, I’m very interested in her definition of “healed”. I’m not sure what metric she follows. It could be 100% complete baby skin free of rash? No flares? No scratching? No skin dryness? or what, that exactly constitutes to her definition of healing that gives her the AUTHORITY to make her value judgement on the topic of moisturizing/MW. What is worse, who is she to require someone who has done MW to prove it to her, so that she can be open that her mindset may be wrong. Reeks of narcissism here.

I’m not sure if I’m healed, in fact, I can’t be bothered. All I know is that 4 months + into TSW and MW, I’m able to do things that I couldn’t do when I was constantly on moisturizers. Playing soccer, running, going out shopping, talking a walk in the sun, thinking and writing critically etc. All I know is that I suffered a hell lot when I was constantly using moisturizers (all sorts, natural/synthetic). There is a big difference in myself in knowing that NOT moisturizing helped alot. Of course, my personal experience counts for nothing, but please read the thread, read more blogs and see that there are many others who has reported the same experience as myself.

Secondly, I’d like to educate KP and her forum lackeys on the concept of : “Absence of evidence does not mean evidence of absence.” In KP limited worldview and experience, she has not seen anyone who has healed doing MW. It does not mean that there is NO ONE who has healed doing MW. An analogy will be the black swan example. Prior to the discovery of Black Swans, due to the mass observation of only white swans, people made the claim that “All swans are white and there are no black swans”. Until they found one. So, in order to solve KP IQ problem, I suggest she open her eyes, read more research, read more blogs, listen to their members in the forums (and stop banning them for a start), maybe pay a visit to Dr. Sato and the numerous children he has treated with MW techniques.

Thirdly, one reason why ITSAN and their crew see such limited information is because of their early and ongoing censorship policies. They banned members who had an opposing/alternative view that, in their questionable authority, believe that information is bad for their forum members. Example, Joey removed my vaseline post (See here); they banned Dan, who was one of the early advocates of MW and all the information he posted. I’ve also received emails from my readers showing documentary proof that their moderators removed my blog as well as a couple of other’s blog hyperlinks as they tried to share in the ITSAN forum. (I thought about disclosing them, perhaps I will in public, despite it not being constructive/valuable to my readers.)

Now, what you don’t see, you don’t know. Member SwankyButters wrote this:

“As I read it, Dr. Fukuya feels it can be helpful but it’s not a ‘this way or the highway’ type thing. I think the reason this got all weird here was the insistence from some that it was a cure all and two that Itsan was actively trying to either stop people talking about it or not presenting it as a course of action, which I have not seen at all. I’ve not see that kind of censorship.”

You have not seen because you have not been censored. What is censored is already unable to be seen, and ITSAN don’t tell the whole world on what they have removed.

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Another post from JT sums up the climate and mental models (ingrained biasness) from KP and her lackeys:

“Joey and Kelly,

Here is the quote that made me think itsan was discouraging talk about MW: “We know that there are many concerns in the world like cancer, GMO foods, diets, environment,  all kinds of other health issues and skin ailments but we want to try and keep posts on the topic of topical steroid addiction and withdrawal so the forum does not get loaded with posts about other things that may have little to nothing to do with the cause and cure of TSA/TSW.” it then says “The no moisture idea is one such example“.

That’s is. Don’t be mad at me or kick me off the forum. I read this and I thought it meant you didn’t want us talking about it. I’m not trying to twist your words Joey, or slam you. I didn’t even know you wrote it. I think you have been such a help to many people here and I’m NOT attacking you. I was upset because I saw a change for the better in my own condition within a week of stopping moisturizers and I though this message was being censored. I’ve been steroid free and suffering since July 4th, 2012 and nothing (other than immunosuppressants) has made such a quick change for the better for me. And I’ve read numerous blogs of other sufferers who had the exact same results as I have. Are we cured? No. Is it speeding the process? Who knows? Are we happy with the results. Yes. And guess what, we’re not selling anyone, anything! We have NOTHING to gain from this other than the satisfaction that posting our experiences may help someone else.”

I don’t need to say more on the level of openness in the forum.

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Closing thoughts:

I believe people who manage such health forums has a moral obligatory to firstly : “Do no harm“. I’ll expect people managing such forums to have at least some modicum of IQ and moral conscientiousness in order for them to do no harm. They also have the obligation to respect alternative views contrary to theirs, and not ban them if they don’t agree. We are not here to make friends, but to share experiences so that others can benefit through availability of information.

Do not recommend products, techniques, etc that you do not know the long-term side effects of. This include moisturizing. I’ve written many post to show why moisturizing is unnatural and bad for our bodies, one that relies heavily on feedback mechanisms and self-regulatory homeostasis mechanisms.

If a product has upsides/benefits, then its great. I’m more concerned of the downsides, the iatrogenics. We all have limited capability in understanding stuff. There is opacity. When we don’t know, better not to give advice readily.

And please, think before you write. They say people are smart until they open their mouths. It is even evidently clear how stupid they are when they start writing.