Wednesday 20 November 2013

The Fundamental Problem With the Term: "Heal Faster" .

"...while I, weary traveller, must always take the slower path..." Doctor Who, The Girl in the Fireplace.

Nobody wants to be stuck in steroid withdrawals for any longer than is necessary.

Fact.

The thing is, when I started out on this TSW journey, I had it in my head that it would only take me 6-12 months to heal. It seems madness now that I think about it, especially considering my usage history, but at the time, there was not much information available about TSW and only a handful of blogs written by people who had no healed at that point.

Now that some time has passed, there is a wealth of evidence available about TSW healing times:

1. Children tend to heal relatively quickly, as they have not generally used as much TS as an adult. Keira, who I based my Scratchy Monster story on, took 9 months to completely heal from TSW.

2. Those with minimal use of steroids tend to heal quite quickly too. A member of the Itsan forum whose son used steroid creams for 3 months and became addicted reported that he was fully healed after 10.5 months.

3. For the rest of us, healing can vary dramatically. Rochelle, my fellow blogger, posted a healed video of herself at 16 months, Juliana, another blogger, at 24 months. Those with 40 plus years of heavy steroid usage, such as Kelly Palace, founder of Itsan, are reporting longer healing times. Kelly is now 4 years into withdrawals and mainly healed, but Dr Fukaya has told her that she may take 5-7 years in total to fully heal due to her usage history.

4. When Itsan interviewed a leading doctor on this subject, he started that, on average, most cases of TSW take 3 years to heal.

Based on these facts, we can see that there is a huge variation when it comes to healing times. Why is this?

Well, it mainly has to do with steroid usage and potency. In theory, a person who has used a small amount of hydrocortisone over 6 months should heal a lot quicker than someone who has used oral and potent steroids for 40 years.

Even if someone uses the same cream as someone else over the same time period, usage will vary. One person may get through a 30g tube every week, another every month. Clearly this will affect healing times.

Of course, there are other factors too. Race and skin type may play a part and I hope that as time goes on and more people share experiences, that we will find out if certain skin types take longer to heal. I have a theory that as I am fair skinned and European, it may take me longer to heal than say, someone of Asian or African descent. Of course, the opposite may also be true. I would love some facts and figures on this too see if it is true.

Geography may play a part. some of us live in hot countries, which can be a problem at the start of TSW, but beneficial later on. Others live in cold countries. As temperature affects blood vessels, this will likely play some part in healing times.

Allergen exposure may prolong TSW. If we are constantly in contact with irritants, it makes sense to assume that the skin will be slower to heal. This was true for one of Dr Fukayas case studies, who had a severe rebound after moving house and coming into contact with allergens that caused a severe reaction.

...OK, which brings me to the point of this post. Everyone with TSW wants to know how to heal faster.

But when they ask this question, they are missing an important word.

THAN.......

It makes sense, doesn't it? If something is faster, the word than should come after.

So...faster than what?

So here is where we need a level playing field. Which, by the way, we are never going to get.

Take for example two ladies we will call Mrs X and Mrs Y. Lets say they stopped steroids the same time as me, November 2011.

Now lets say Mrs X took 24 months to heal, Mrs Y took 18 months and I took 3 years.

Why did Mrs Y heal faster? There are simply too many variables to provide a sensible answer. We may all live in different countries, be different ages, eat different food, have different allergies, use different detergents, do different jobs, have different immune systems and have different usage histories,The list goes on.

There is no level playing field. We simply cannot compare these three individuals and come to a conclusion as to why one healed faster than the others.

Now lets say Mrs Y claims to heal faster because she used "snake oil" every day.

As we can see from the above argument, there are far too many variables to validate the efficiency of "snake oil" as a substance to speed up TSW.

So how could we validate the effectiveness of "snake oil"?

Well, an extreme way would be to get a set of identical twins with identical usage histories, put them in a sterile box for 2 years, feeding them with identical food and dressing them in identical clothing, giving one twin "snake oil" and letting the other go without and seeing who healed first.

A more sensible way would be to study two large groups of TSW patients with similar usage histories. Give one group the "snake oil" and see if they healed substantially quicker than the other group.

Repeat the experiment enough times and you will have convincing evidence about the efficacy of "snake oil".

...then repeat the same experiment with the many supplements, creams and "cures" touted for speeding up TSW.

Unfortunately, the fact is that at this point in time, the 20th November 2013, No such experiment has ever taken place. Hopefully, one day it will, but as things stand we have zero evidence for cures that speed up TSW. No studies, no papers, no articles. Zip, zero, Nada.

Therefore, if someone comes along and claims that they have a way of speeding up TSW, demand proof. Demand to see the article, the study, the document, that PROVES what they are saying is true. By the way, the fact that it worked for them personally does not count as evidence, just like someone saying "There is no proof, but this is my opinion, it is obvious", is utter nonsense.

Maybe one day things will change. It is my sincere hope that they do. I hope that one day, scientists will devise a remedy to shorten TSW healing times substantially. But until that time, please do not allow  yourselves to be duped by those who promise the world. In my experience, those who make such promises usually want money and nobody should spend $$$$$ to cure their TSW.

So next time someone claims that "snake oil", or something similar will clear your TSW faster, just reply:

"Faster than what......?"

5 comments:

Leslie said...

Hi Louise,

Pertinent post. My answer to your question is:

Comparative to oneself. The only yardstick to measure is against your own healing rate. One is perceptive to his or her own rates of healing. When not, loved ones who can visibly see the changes can tell you that.

There is no way in the world a controlled study can be done that is meaningful. The only way to do so is to get a pair of identical twins, ensure they have the same diet/environment since birth, get the same eczema and use one as a control. A statistical confirmation has to be done via many many other twins.

For TSW sufferers like you and me, there is no need to prove to anyone 'you should do this' in order to heal faster. There is no point in engaging ego-trips in comparing "Hey you healed in 10 months, I healed in 5 mths - I win". No. For TSW sufferers we all want the best for all of us. One has to realise there is really no incentive to do that, unless one has personal vested interest in doing so.

Nonetheless, it is a very well thought out post.

Leslie
saynototopicalsteroids.com

Louise said...

Great answer Leslie,

I totally agree with everything that you have said and I did mention the twin analogy in my post.

I felt compelled to write this because get so frustrated when I see people claiming that X, Y or Z makes you heal faster, especially when they berate those of us who are taking a long time to heal and claiming that we are doing something wrong and slowing down our own healing.Such talk is negative and unhelpful

I hope nobody views TSW as a competition! I think the majority of us in the TSW community do feel that we are "in it together" and feel no bitterness at those who are quick to heal, just happiness that they are over the ordeal.

Thank you very much Leslie for your comments and insight on the subject. x

Tracy S said...

Hi Louise! I absolutely treasure you and your blog! I see your points clearly. Unfortunately I sometimes think hearing that NOTHING helps over and over just adds to the already depressed mindset one has during the thick of TSW. I know because I often felt this way during my most horrible months. I agree though that spending money on something because one promises a cure is wrong. It adds to the hopeless hope feeling one gets after trying so many things and still the flares continue. I still struggle with this balance - trying not to offer false hope, yet trying to research ways to help the symptoms of TSW in a more scientific way (hard to do with no funding).

Being in the medical field, I know all too well how research is done - funding typically only comes if the outcome is going to benefit someone. Who is going to research TSW? How does it benefit anyone but those suffering? The auto-immune drugs have already been researched and that is all the docs are offering us. So my attitude towards wanting to find something to help the symptoms of TSW (or shorten the length of withdrawal) is based on my frustration knowing very few scientists are going to be out there trying to help us. It is because of this knowledge I persevere on my own accord - that is just who I am. I personally could do a study and write a paper - I have the degree and knowledge to do so. But I bang my head against the wall thinking of how to get funding for even a simple study. And even IF I got funding, who is going to publish my research paper? Again - who benefits? The drug companies sure don't especially since it would be encouraging millions of people to NOT use steroid creams. This would cost them millions of dollars, so my paper would be un-welcomed.

So I see your point clearly and understand your frustration with those of us wanting to try so many different things. You see people tossing money down the drain. I COMPLETELY understand that. But I see people trying things because they don't want to lose hope. And I see people like me trying things because we know there is no one out there who will be doing a study anytime in the near future for TSW, if at all.

I didn't take your post personally, although I know I came across that way. Instead I just wanted to provide a different perspective other than the typical "I'm willing to try anything to end this suffering" mentality. I look at this as a no win situation for those coming behind us as the studies are just not there yet and I see none coming anytime soon. Maybe that's a pessimistic attitude, but I see it as the way our society is as a whole - the big scientists and universities are not going to do research unless it somehow brings them money and recognition.

Anyway, just wanted to add another perspective to this fine debate! :) Hope your flare is all done and things are going well with you!!

Louise said...

Thank you so much Tracy and thanks for adding another perspective to the argument.

I suppose there is a very fine line between someone trying something new to ease TSW symptoms and someone trying something new and making bold claims that it speeds up healing. I have no problem with the former, as long as the patient enters into it with eyes wide open.

Tracy, I know you have tried many remedies, but you always blog about it in a responsible and sensible way, letting readers come to their own conclusions. Unfortunately, there are other sites on the internet where people claim to have all the answers. It is people like that, I have a problem with. They blog in an irresponsible way and offer false hope to the vulnerable.

The worst case I saw of this was recently, when an unscrupulous blogger stole some photos from one of the TSW blogs, put the photo next to a stock photo of a model who looked similar and offered a fake "cure" based on these supposed before and after pictures. he arrogantly claimed that his remedy would heal eczema in five days! No doubt some people would have seen the photos and been duped into buying his fake medicine.

It is cowboys like this that I refer to in the blogpost.
Tracy, you are doing a wonderful job with your blog and I read every update faithfully. I do hope some scientists pick up the baton with TSW remedies at some point. There were some promising results in early studies on olopatidine as a remedy for TSW, but this does not seem to have been followed up. I sincerely hope that at some point someone does research a way to speed up TSW, but like you said, it would mean the pharma would sell less steroid creams.

Keep up the good work. X

Minnie-Cat said...

Thank you Louise for great post.
I agree with all you said. Really, this is how i thought so many times, arguing with myself. I'm tired to explain people who asks me,or even to people familiar with TSW. But this post explain everything, just everything. Everyone is different, this is so clear! Thank you!!!