More From Sufferers

Hey Preventables,

I wanted to make another blog just showcasing some of the things that are being posted in the groups. This PREVENTABLE condition is causing so much pain and suffering. All I wish to do is play a role in ending the overprescription of topical steroids so this pain can end. Please consider donating to this cause either through the project PayPal (preventable.doc@gmail.com), or through the donation link on the front page.

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Way too many of us get laughed at in a doctor’s office. How inconsiderate, especially if we are bringing FACTUAL resources with us written by other doctors.

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This is so much more than a skin problem. Our mental health comes into play and we need all the support we can get.

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Doctors are prescribing these drugs to be used on places the very drug itself says NOT to be used on. There needs to come a point where the “DO NOT USE PAST 2 WEEKS…. unless prescribed by your doctor” needs to be abolished. Just because the doctor says to do it, doesn’t mean the warning on the label goes away.

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I, personally, did two sets of tapering oral steroids. My skin gradual got better on the pills, but as soon as it tapered off, I went right back into this mess.

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How unfair this that? Even when there is proof, a doctor is going to deny it? It makes absolutely no sense.

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So many people who don’t believe in this say they think its outrageous that people are doing this and should go back to the drugs if they are suicidal. When will the thinking start turning towards saving people from this by actually prescribing these drugs correctly/actually finding out the cause of the patient’s problem instead of continuing to endanger patients and call them crazy for ceasing to use a drug that is literally destroying them from the inside out?

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I saved the best for last. This hits home for so many sufferers.

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This is not about bashing steroids. This is about showcasing how overprescribing these drugs are ruining people’s lives in every way imaginable.

ITSAN — Doctor Pages

As many may know, ITSAN.org is the non-profit organization that advocates to help fight against Red Skin Syndrome and stands as a refuge for those who are suffering and have no support. ITSAN stands for International Topical Steroid Addiction Network.

The team leaders, Joey VanDyke (President) and Kathy Tullos (Executive Director), have poured their heart and souls into this organization to help out everyone who is lost and weary while enduring this heartbreaking condition.

One way they give back is by making it as easy as possible for sufferers to advocate for themselves. These woman get paid hardly any money to do full time jobs in order to make this possible.

Kathy went above and beyond and created this detailed, incredibly informative page that we all can show to doctors in order to help them see that this condition is not only real, but should be taken very seriously.

DOCTORS PAGE

Please, use this page whenever you are trying to inform doctors of Red Skin Syndrome. Here is just some of the wisdom found on this page:

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This page should be utilized in every way to spread awareness.

In Our Shoes

I have been wanting to do something like this for awhile. It is just an extremely minuscule snapshot of what gets posted in support groups for Eczema, Red Skin Syndrome, or Topical Steroid Withdrawal.

Many professionals, who are meant to care for a patient, fall (very) short when it comes to speaking about adverse affects with steroids. It is egregious the way some patients are treated in a doctor’s office.

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To be laughed at is already demeaning towards someone who is ACTUALLY trying to inform you of a very serious and highly factual condition, but then, as a professional, negate that it is real… this is where the problem lies. We are told to trust in our doctors and that whenever we have a question or concern, they are who we should be going to. BUT, what if our professionals don’t know it all? Red Skin Syndrome is not a joke and certainly isn’t a laughing matter. To be completely written off and spoken down to while the patient was the one who really knew the truth, is astounding. We should not be having to stick up for ourselves at any medical facility. We are going through enough physically and mentally. Most don’t even try to go to doctors anymore because they are tired of being made fun of when they should be getting the care they deserve and need.

Preventable: Protecting Our Largest Organ will help doctors understand the seriousness behind this condition and how they have it in their power to stop this from ever happening again. 

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“They told me I would have to use this for life.” And we are called steroid phobic because…?

How outrageous to tell a patient that THIS is the only way to help them. It states it clearly on the inserts that this SHOULD NOT be used for long periods of time. To tell a patient that the health of their skin depends on this drug forever is not only an ill educated prescription, but a lack understanding of what these are truly capable of doing.

Preventable: Protecting Our Largest Organ will help disseminate correct information about topical steroids and what they are doing not only on the surface of our skin for long periods of time (even 2 weeks!), but what they are doing to the inside of our bodies as well. 

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Here in lies the problem with Western medicine. They have ONE go to when it comes to skin ailments. Most will stick to that one trick. You most certainly have a chance of getting better without steroids. The problem is that they are taught that only one method, which is meant to help mask symptoms, not offer a healing change towards the cause of your symptoms, works. Now, we do have a few other options, but in my opinion, they are still either so new we don’t have any knowledge on the damage it could also be doing and/or we know the drug is dangerous and comes with risks just like steroids do. But I see in so many posts how doctors asks patients ‘why did you bother coming in if you weren’t going to take the steroids?’ We are paying for their services and care and yet are being treated as if we’ve wasted their time. Perhaps we were hoping for more than just ‘here are some steroids’. It just simply is not acceptable anymore for this to continue to happen.

Preventable: Protecting Our Largest Organ will shatter this opinion of topical steroids are the only method to treat eczema. We have so much new technology and medical advancements that we have the power to truly find out what is causing our skin to lose control. We can test for allergies, irritants, gut problems, stress issues, autoimmune disorders… we can’t go on just nonsensically masking our problems with a medication for long periods of time that can actually cause us detrimental harm in the long run. 

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Again, this type of condescension is not helpful nor is it particularly kind.

Other posts I tend to see are heartbreaking, ones crying out in desperation as to why this is happening to them. They are losing their jobs, their relationships, their family… ALL from a preventable condition.

This has got to end. And we can do it. If anyone feels moved by this project and wants to help this type of suffering, please visit the sponsorship link above for a tax deductible contribution, or visit the donation link above if you do not need a tax receipt. 

Donate Here

 

Another New Drug

Very recently a new drug was introduced to the atopic dermatitis community: Eucrisa

This drug is different from Protpic and Elidel, which are immunosuppressants (Tacrolimus cream/ointment) that inhibit T-lymphocyte activation and the transcription for genes which encode IL-3, IL-4 and IL-5. (source) These drugs come with their own risks, one of which is the black box label (possible cancer causing agent).

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Not exactly the best drug alternative from topical steroids, but we all know about topical steroids and their effects.

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But now we have the new Eucrisa to examine.

I have been trying to do a little reading about it. It is not like Protopic and Elidel. It is a phosphodiesterase 4 (PDE-4) inhibitor.

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The trial seemed to fair well with most participants, although there were some adverse reactions. The most severe one was hypersensitivity to the active ingredient, crisaborole. Infections, from what I read in the source material, was the highest issue (11.7% of trial patients).

The trial lasted 28 days where participants applied the drug twice, daily. This is the expected prescription for the drug. Since we do not know much more about the new drug, I personally stress sticking to this prescription and NOT using this drug for more than those 28 days. Is there a tapering protocol in effect? Not that I can see. Just cessation after the 28 days .

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I hope this helps everyone out a bit if their doctor suggests using this new medication, or the Protopic/Elidel. Again, personally, I would steer clear of the immunosuppressant creams and ointments. They seem to have many of the same effects as topical steroids.

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The possible irreversible effects of antibiotics

We focus a lot on how chronic use of steroids can cause much damage to our body, inside and out. There are actually many drugs that can do this. One drug that most of us end up using (because of Red Skin Syndrome) is antibiotics. What many don’t know is that this drug can also cause much harm.

At first, some get very defensive on this subject because, if you are told you need antibiotics, you must need them for a reason. Many of us get staph on our skin and are immediately prescribed this drug to help. But we must take into consideration the pros and cons of this drug, not just on ourselves but others.

I think people see their own use of antibiotics as a solo consequence. That if they wish to use them as much as they want then they are the only ones who will suffer the consequences. However, that is not the case. If people begin to overuse this drug, it can change the microflora for the next generation. It is a domino effect that can change the world.

This is a very serious problem when it comes to newborns. One doctor, Martin Blaser, has been vital in this research and whom highlighted his immense concern for babies born from either C-seciton or from mothers who were given antibiotics during the pregnancy. These babies could have an insufficient amount of friendly guy flora, leaving them susceptible to health conditions and problems.

These health problems are often autoimmune related. Even just a one-time intravenous dose of antibiotics can alter our gut flora.

An unbalanced microbiota in the gut is also a contributing factor in autoimmunity. (13) Infection with certain microbial pathogens can trigger autoimmune reactions in joints and other organs. (14) The destruction of healthy gut flora can make the mucosal lining more susceptible to leakage, which some researchers believe is a precondition for developing autoimmunity. (1516) It is well-established that the balance of gut bacteria plays a key role in the formation of a proper immune response. (1718) A lack of healthy gut bacteria is associated with allergies, IBD, and general autoimmune reactions when this immune modulation goes awry.

Now, there are certain situations where we do need antibiotics. We can not always shy away from their services. But there are things we can do to help ourselves out.

Though antibiotics may be necessary in certain situations, it’s important to weigh the benefits of using them with the potential risks that may come from the permanent alteration of the gut flora. If antibiotics must be used (and there are certainly situations where this is the case), special care should be taken to not only restore their gut flora using probiotic foods and supplements, but to eat a diet that supports healthy gut microbiota with plenty of fermentable fibers from starch and the removal of food toxins.

For those instances where we can forgo oral antibiotics, there are other alternatives we can use to help us. You can find these alternatives here: Mark Sisson

We need to truly keep our minds open to these alternatives instead of jumping right into using antibiotics. Much like steroids, they can really hinder our health. And imagine using both at the same time for long periods of time. It can reek absolute havoc on our bodies.

Chris Kresser: High Price of Antibiotics

 

 

Why are we seeing the body as parts instead of as a whole?

I feel Chris Kresser said it best:

“In conventional medicine, there’s a doctor for each different body part, and so if you have heart disease and you have eczema, you go see the cardiologist for heart disease, you see the dermatologist for eczema, maybe you see an immunologist if you have an autoimmune disease, and all of these things are being looked at as separate conditions. As a patient, it can be pretty bewildering to just have this idea that you have all of these kind of separate and disconnected things happening and not to have an idea that there might be a common root cause that’s driving all of these pathologies. Of course, what that means is if there is a common root cause, then there’s a possibility of intervening at that level and seeing an improvement across the board in all of these conditions instead of trying to address each of them in a kind of silo fashion with specific drugs and things for each condition.” (CHRIS KRESSER PODCAST)

Now a days, when something is wrong and it’s pinpointed to a certain part of the body, we are referred to a specialist. This doctors specifically sees patients with one particular problem or problem area. It’s absolutely wonderful to have doctors well versed in one particular area of study, but why is it that when we speak of one problem in our body, that it is never thought to be connected to us as a whole? We are one huge machine.

When doctors now speak about the gut, and how so many other issues in the body arise from our gut not functioning properly, it makes absolute sense! Where do we get our energy? Food. Where does the food go? Into our mouths and down into our stomach and intestines and colon to get digested. Where do we get our nutrients from? Digesting the food! If we are eating foods that are creating a major imbalance in our digestive system, then we aren’t getting the proper fuel we need to function, which in turn can disrupt a slew of organs in our body. It can affect our brain, our eyes, our motor function, our muscle growth, our hormone levels and moods, our bone density, our blood circulation, and for us sufferers, our skin!

My biggest concern with modern medicine is the fact that it masks these problems. I recently watched a commercial for a pharmaceutical medication for helping lower cholesterol. This 1 minute segment was horrifyingly riddleddddd with side effects, including DEATH. Why on earth do we accept this form of treatment? Because it’s easier than changing our diet? That is the craziest excuse out there! We would rather risk death than yielding from a 3x a week McDonalds run?

This is where our solution lies! I will never bash steroids, be it orally, injection, or topically, because they are truly important in the medical community. However, what I can not and will not stand for any longer is the chronic use of this drug as a first line treatment for conditions that NEED to be better evaluated first because, chances are, patients don’t even need the steroids!! If you’re going into anaphylactic shock, of course take a steroid!! But, if you have eczema and you go into a doctor’s office and the first thing they do is write you a prescription for a steroid without evaluating it further… absolutely wrong (in my opinion). That is fast food service. You are receiving the McDonald’s $1 value menu treatment, and that is what is hurting so many around the world from ACTUALLY getting better.

Now, are there conditions that sadly may need chronic bursts of steroids? Yes there are. BUT, we should be finding alternative ways to help maintain a better balance for these conditions than subject innocent patients to the severe consequences that taking steroids chronically has on the body.


If we start looking at our body as a whole, instead of our problems being directed by the area they are located, we may start to see some real change in our world. And when it comes to Red Skin Syndrome prevention, this is VITAL! Taking the time to find out what is truly wrong with your skin, which may be actually stemming from gut issues, can save you so much pain and suffering. I would much rather give up dairy, or wheat, or fast foods (or all three if needed!) if that meant living a life that wasn’t constantly bombarded with skin concerns and anxiety for having to deal with them on a daily basis.

Are we perfect? No. It’s not always easy to eat optimally every single day of our lives (goodness, Christmas is upon us!), but we can make an extremely conscious effort to do it everyday. It’s important to stick to the diet that works for you 100% of the time, but give yourself credit.

Find a doctor who is willing to work with you, as an individual human being, and who cares about finding out what will work for you. They will take the time to dissect you from the inside out to pinpoint what is causing you harm AND help you live your life to it’s highest potential. No one deserves fast food treatment, especially if it leads to something as devastating as Red Skin Syndrome.

 

Depression Reversal

Ever thought about our stomachs affecting our thoughts and emotions?

“There is a huge and growing everyday body of evidence connecting the health of the gut to the health of the brain. In fact, there’s a saying in functional medicine, fire in the gut, fire in the brain, which means that if you have inflammation, parasites, small intestinal bacterial overgrowth, fungal overgrowth, or dysbiosis in the gut, then that is going to produce an inflammatory response that in turn affects the brain and can cause inflammation and a whole bunch of other problems in the brain, and this is not a fringe theory at this point. It’s true that unfortunately not a lot of primary care doctors or even psychologists or psychiatrists are aware of this connection, but that doesn’t mean it isn’t well established in the scientific literature. It absolutely is. And in fact, it’s been known for almost a hundred years going back to some research that was done at Duke in the early 1930s and 1920s connecting the gut and the brain and even the skin in this axis—the gut–brain–skin axis, which I’ve written and spoken about before.”

This podcast goes into a lot of detail about how inflammation, anywhere in the body, can affect our minds (the frontal cortex).

Also, Kresser talks about the HPA axis, or the hypothalamic–pituitary–adrenal axis. If we’ve learned anything about topical steroid dependency, we know that overuse can lead to a suppression of the HPA axis. And then, add chronic, everyday stress to the situation, and you’ve got a system that is extremely overloaded.

The last big subject he touches on is deficiencies in the body that could be contributing to depression. If we are lacking in certain vitamins and aren’t using it optimally in the body (methylation issues) then it can be throwing our balance off.

I highly recommend this podcast if you wish to catch his more in depth explanations on depression and inflammation in the body. What we are eating and lacking in our diet could  the reason we are mentally suffering and struggling to get through certain situations.

Kresser Podcast on Anxiety