How to Report an Adverse Drug Reaction to the FDA

Topical Steroid Addiction is awful. No two ways about it. When a patient suffers an adverse reaction from a drug or medicine, they can feel helpless and let down. But there is a way that we can empower ourselves and hopefully prevent future generations from suffering from the same fate; by reporting our symptoms to the relevant authority.

But how do we go about doing this? And is there any point in doing so?

How to Report an Adverse Drug Reaction:

How you go about reporting a drug will depend on which country you live in. Different countries have different procedures. Below is a list of some of the main ones:

USA: Medwatch

Those living in the USA can report adverse drug reaction to Medwatch, the official FDA channel. The site states that:

"By reporting your experience or suspicion of a product problem to MedWatch you could help identify an unknown risk and potentially spark a variety of actions—from changes to a warning label to removal of the product from the market."

UK: Yellow Card

In the UK, there is a scheme called Yellow Card. It is run by the MHRA. The website form is easy to use and can be used to report any side effects from medicines.

New Zealand: Vigilance Centre

A similar scheme for patients in New Zealand.

Canada: MedEffect

Patients in Canada can report drug reactions on the Vigilance Program website, by phone or by post.

What to Report?

Curgolf from the Itsan forum produced this handy guide to reporting. Thanks Curgolf.


Some suggestions when filling out the form:

Product:  List all the TS/steroid products you used

Company:  List all the companies

Expiration date: Write: "Used all products before expiration dates." 

Lot Number: list all if you have them

NDC #:  National Drug Code is a 10-digit code to identify drugs.  Google "NDC directory or National Drug Code directory" and search each drug by name., e.g., mometasone.

If you threw all away and can't remember the doses/product info, call your pharmacy.  They should be able to print out a list of all the drugs you've taken. While you're at it, ask them for the NDC codes to each and maybe save yourself a step.

You can fill out the form online but need to print it out for a copy--the site does not save what you enter.
If your information cannot fit in the space provided, put the rest of the info on additional paper "write: "See Attached") and send it in with the main form.

***One section says, "Tell us what happened and how it happened." LET"S TELL THEM!  include colored pictures if you want, especially of the hallmark signs of TSW:
Red skin all over but white hands, tons of flaking shedding skin, oozing, purple legs, swelling, etc. LET them SEE hell on earth!

Make a copy for yourself and one for the FDA.  Mail or fax to the FDA listed on the form at the bottom of page 3.  Save all the documents you send, or send copies to Dr. Fukaya and Dr. Rapaport, so they can have additional evidence of existing Red Skinners when NEA interviews them. 
Send a copy to the NEA., knowing they may reject them because they are not "official research," but at least they'll know we're out here.

Is it all Worth it?

You may wonder if there is any point reporting your TSW to the authorities. You may wonder if anyone is listening. But I have proof that they are listening. Please check out this link to the Medsafe site that states the dangers of steroid use on the face. They received 14 complaints and produced this document. Imagine what they would do if even more people reported side effects.

In the document: Steroid Rebound-A Topical Issue we have the example of a man who reported the steroid side effects to Medsafe after having a bad reaction to 0.5% hydrocortisone. I am pleased to report that the man is now fully healed from all withdrawal symptoms after an 11 month withdrawal period (His father is a member of the Itsan forum and provides us with updates).

Please, if you haven't filled in one of these forms, please do. It is one way that you can make a real difference and maybe even change the world!

Dr Fukaya Steroid Experiment and Photos of People Healed From Topical Steroid Addiction

This week has been a really good week for blog posts and I thought I would bring your attention to two of my favourites this week. In my opinion, they are must reads and once you have read what they are about, you will see why.

The first important blog post is from Tommy's Skin of Rose blog. Tommy is a brilliant asset for us in the TSW community because she is able to translate a lot of the Japanese documents for us into English. A lot of pioneering work and research is being done in Japan by the doctors Sato and Dr Mototsugu Fukaya. We are grateful for their work, but as much of it is in Japanese, we are in need of translators. Tommy helps bridge the gap. Thank you Tommy!

Anyway, this week she has written about what happened when Dr Fukaya did an experiment on himself and applied some steroid cream to his arm! Don't worry folks, he survived, but his results are really interesting on a cellular level and show that just because we can't see any damage to the naked eye after using steroids, there is actually a LOT going on at a cellular level. Thanks Dr F for being brave and doing this experiment for us!

My second important blog is by Kristina, over on the Scratchy Monster blog. She and the rest of the Itsan board have been working very hard to build links with the National eczema association and this has led to them creating a task force to investigate topical steroid addiction.

Her post is important because it contains lots of photos of healed children who have come through TSW. These little "vets" are an inspiration and encouragement to the rest of us that we will beat this thing. Thanks to everyone who submitted photos to Itsan to show the NEA. I love looking at the healed skin photos.

For more healed skin photos head on over to the Itsan gallery. The pictures remind us that we will heal, so if you are feeling a bit down and depressed, the photos can be a real boost.

I hope you enjoy reading my pick of the blogs. Thanks to all the TSW bloggers who work very hard raising awareness.

Exciting News From National Eczema Association!

My last post was all about making our voices heard and helping to create change.

Well, it seems that at long last somebody is listening. Today I read an exciting post on the National Eczema Association Website.

It states:

"Over the past few years, the National Eczema Association (NEA) has received an increasing number of patient inquiries regarding what has been termed Topical Steroid Addiction (TSA), also known as Red Skin Syndrome (RSS). Dermatologists have also reported patient inquiries on the subject. Posts on NEA social media sites and other eczema channels have grown on TSA, instilling fear of TSA in many, while adding to the confusion eczema patients and caregivers experience. A non-profit group has formed, International Topical Steroid Addiction Network (ITSAN.org), led by dermatologist Dr. Marvin Rapaport, whose mission is to raise awareness on TSA and provide resources to those who suffer TSA.
In response, NEA has formed a Task Force to conduct an in-depth review and create NEA position on Topical Steroid Addiction. ITSAN documentation of patient experiences with TSA has been submitted to the Task Force."

I am really encouraged by this news. If the NEA understand about the dangers of steroid addiction, then ITSAN will have a strong ally in spreading the word to even more people. Not only that, but more doctors and dermatologists would be informed about red Skin Syndrome too.

Two of the aims of the committee are to:

Prepare article/commentary/editorial for publication in dermatology literature.

Produce patient-friendly NEA position statement/video on TSA for distribution on NEA communication channels.

These documents would be really useful tools for patients to share with doctors.

My only slight reservation with the research is the fact that the NEA currently receive funding from some of the big pharmaceutical companies. I sincerely hope that this does not create a conflict of interests when it comes to publishing the final results.

Despite this, I am very hopeful about this development and hope that it signals a new era in the fight to publicise this much misunderstood condition and spread awareness.

Thank you NEA for taking our concerns seriously and best wishes for the success of the project.

Search Engine Optimization Tips

I'm so happy because today, my blog reached the 300,000 pageview marker!

I've been up and running for just over two years and I am so happy to reach this point. I hope the blog has helped the people that have been reading my posts.

In that time, I have also seen the number of steroid withdrawal blogs grow exponentially. It is fantastic that each blog is a little beacon that someone may find in their search for a better way than steroid creams.

A few weeks ago, I posted some blogging tips, to help all of the bloggers reach their full potential. If you haven't read the blogging tips guide, go and do it now and then come back to this page when you are finished!

Point 7 on the list was SEO, or Search Engine Optimization. I wanted to talk about it a bit more today, because I think that my tips will really help bloggers to get more pageviews and increase traffic to their blog. As most of our blogs are linked, we thus increase traffic for all of the other steroid withdrawal blogs too.

SEO Basics

Title:

When we type something into Google, we want to get the most relevant results for our search. To make this happen, Google use "bots" to crawl the web, checking out websites.

To deem whether a blog is relevant, the bots will first look at the title of the site. This is why it is so important to have a strong title for your blog. There is a temptation when you set up a blog to give it a humorous or clever name, perhaps a play on words, but it does you no favours in the Google rankings. If someone types in "Eczema" on a search, the most likely sites to rank high on Google will be those that have "eczema" in the title. For me, one of the best examples of good SEO in a title is Jenny Stradling's I Have Eczema blog. Imagine someone is searching the web for information. They are likely to type in a term like "I have eczema" and Jenny's blog will pop up high on the rankings.

By the way, if anyone is unhappy with the title of their blog after reading this, it is very easy to change it in the blogger settings to something a little more SEO friendly. It is worth it in the long term as it will make your blog more visible.

Post Titles

The next thing the bots are looking for is the name of your post. I wish I had known this in the past, especially in the beginning of this blog, as I used to just put the day as the title of the post. Who is going to type "Day 276" into a search engine? Probably nobody.

These days I try and think carefully how to word my titles. Simple is best. Think about who you want to reach with your post and use it in the title. Think about what people are typing into a search engine. For example, I recently posted about my experience with moisturiser withdrawal. I entitled the post "What Happens When You Stop Using Moisturisers?" It was a strong title because it was what I imagined someone would type in if they were searching for this information. Now if I put "A Month of MW" as my title, it would be a very weak title, because nobody types in "MW" into Google when searching for information about moisturiser withdrawal.

 

Keywords and Content

Now its time to look at the body of your blogpost. You want to fill it with as many keywords as you can, but don't overstuff it or the Google bots will detect that something funny is going on. For example, if I used the term "Topical Steroid Withdrawal" 20 times in a short post, Google would actually count it against me, because the language is not natural.

Again, think about terms that people use for searches. Unless someone is familiar with the term "Topical Steroid Withdrawal", it is more likely that they will be searching for things like "eczema", "rash", "steroid cream" or "burning rash". So try and get these terms and phrases into the body of your text whenever you can, so that the search engine picks up on them. Be diverse! Cast your keywords out like a net. Try and think what people will be typing when they search the web.

There is a tool on Blogger where you can actually look at the terms that people used in their search. It can give you a good idea of which search terms are popular and what words will be beneficial in your text.

A word to the wise about abbreviations. I'm VERY guilty of this, but I am thinking about it more seriously these days. In the ITSAN community, we waffle on about RSS (Red skin syndrome), TSW (topical steroid withdrawal), TSA (addiction) and MW (moisturiser withdrawal). I know that it saves time by using the acronyms, but its poor for SEO. Do you really think that if someone types TSW into Google, that they are going to be directed to one of our blogs? Of course not, so let's try and minimise the use of abbreviations in our posts unless our fingers are getting really tired typing!

Links and Comments

Links and comments are the lifeblood of a blog. It changes the blog from a standalone piece to a community piece. We share, others share back. links are created. People visit our pages and our visibility rises.

A word of caution though. Avoid excessive and unnecessary linking that is designed to manipulate the system. Deliberately and purposefully creating many like-for-like links for the sole purpose of manipulating Google page rank is AGAINST THE WEBMASTER RULES and can get you into a lot of trouble. Don't do it!

When linking to another blog, try and include a keyword in the link. For example, let's imagine that I want to link to Tracy's blog "Stopping Topical Steroids" (great SEO title by the way!). I could do it like this:

To read Tracy's blog, click here

This is BAD SEO!!!!!

Better SEO would be:

Read Tracy's blog about stopping topical steroids.

This time, the link highlights relevant keywords. This means that if someone searches for that term on Google, they are more likely to be directed to Tracy's blog. Using the "click here" link doesn't really benefit anyone.

Of course, the links don't have to be external. You can see at the beginning of this article, I added an internal link to my post about blogging tips. Its another great way to increase pageviews and encourage people to look at the rest of the content on the blog.

Comments are also very important. Encourage readers to comment and debate and then remember to reciprocate by leaving comments on other people's blogs. Lots of comments on a post will give the blog a sense of community and encourage readers to return.

Google Plus

This is a relatively new one for me, but as soon as I joined Google plus, my pageviews rocketed to about 800 a day! It's all about the community. So remember, if you like a post, don't forget to hit the +1 button!

Summary

Ok class, I know its a lot to take in, but let me summarise the main points:

1: Think about your blog title. If it doesn't include one of the following words, it really should: Eczema, steroids, steroid cream, cortisone, rash, skin, corticosteroids, Red Skin Syndrome, topical steroids.

2: Give blogposts meaningful titles. Don't be like me in the early days! If writing in diary style it is better to write "Day 40: Spreading Rash" than just "Day 40". Add a few keywords to the title. Keep it simple.

3: Put plenty of keywords in the body of the text and try not to use abbreviations like TSW too often!

4: Make links count. Highlight important keywords when creating a link, rather than putting "Click here".

5: Be part of the blogging community. Engage with other bloggers by leaving comments and linking to their pages. Don't forget the Google plus +1 button!

Now go out and get lots of pageviews! What are you waiting for?

 

 

Compression Bandages and Rolled Gauze

Yesterday, I briefly touched on the fact that we have to sometimes be creative and inventive in our methods for dealing with TSW symptoms.

Fellow blogger (and good friend) Heather, over on the eczemancipated blog has just written a post about compression bandages and rolled gauze and how she uses these items in the management of her symptoms.

Please take the time to read her well-written and researched blogpost on the subject. It has lots of useful hints and tips about the best products to use and how to use them.

Remember to share any tips and hints in the comments section below if you have a particular method that works well for you.

Intertrigo

It pays to enrich your word power.

I swear that since I started the whole process of stopping steroid creams, I have increased my vocabulary substantially. Maybe that is one of the good side effects of TSW; we become walking dictionaries.

Anyway people.... I have a new word for you today:

INTERTRIGO.

Any idea what it means? C'mon, I have to hurry you. 10 points for the first person to get it....

OK. No takers? For your information, intertrigo is an inflammation or rash of the body folds.

 According to Wikipedia:

"An intertrigo usually develops from the chafing of warm, moist skin in the areas of the inner thighs and genitalia, the armpits, under the breasts, the underside of the belly, behind the ears, and the web spaces between the toes and fingers. An intertrigo usually appears red and raw-looking, and may also itch, ooze, and be sore. Intertrigos occur more often among overweight individuals, those with diabetes, those restricted to bed rest or diaper use, and those who use medical devices, like artificial limbs, that trap moisture against the skin. Also, there are several skin diseases that can cause an intertrigo to develop, such as dermatitis or inverse psoriasis."

Ouch.

As you can imagine, this type of rash is very common in topical steroid withdrawal, which is why I am posting about it.

During my last flare a few weeks ago, I had intertrigo behind my ears. When I went to bed, the side that I lay on would ooze behind the ear, matting up my hair. I also had a horrible oozy rash appear under my bra line, which I had to treat by stuffing kitchen roll under the bra wire!

One thing that we need to be careful about with this kind of rash, is the fact that moist, warm areas can be a breeding ground for bacteria, viruses and fungi. We need to monitor the rash to see if it starts to differ from regular TSW rash, either in appearance, feel or smell, which may suggest secondary infection. Of course, this is incredibly difficult, as ooze usually has an unpleasant smell anyway and there is rarely such a thing as a "typical" TSW rash. But it is important to get familiar with your own body so as to be aware of anything out of the ordinary.

The best way to treat intertrigo is to get air to it, which is obviously pretty darn difficult. Getting the air to it will dry up the ooze quickly. Epsom salt baths are good, or alternatively, many prefer to use dead sea salts. This type of bath will help dry out oozy areas and prevent secondary infections.

Like I said, sometimes it is impossible to get the air to the rash, in which case we have to get inventive! I have my "kitchen roll in bra" method (No way am I posting photos!), whereas others have adapted bandages, wraps and towels to keep oozy areas under control!

Intertrigo is a distressing symptom of topical steroid withdrawal, but symptoms tend to die down with each flare.

Do you readers have any clever or inventive methods for dealing with the ooze? Please share!

I'm Moisturising Again....(photos)

So here we are at the end of the moisturiser withdrawal experiment. I gave it five weeks, but to be perfectly honest, I wasn't enjoying it and neither was my skin!

I try to keep up to date with all of the other TSW blogs and I noticed that quite a few people were trying the experiment at around the same time. I saw that some of them had absolutely fantastic results going "no-mo", whereas others, like me, struggled with it or only saw limited results.

I still think it is worth a try, especially if you are not getting any results using moisturisers or feel like you are getting too dependent on them for comfort. Giving the skin a break can be a great way to "reset" the healing process. Another good thing about this method is that the skin is a lot less red and angry.

In retrospect, I wish that I had tapered the moisturisers rather than stopping them cold turkey. I didn't really give my skin time to adjust in making its own oils. I ended up "hard landing" like Dr Fukaya warned.

The first two weeks were very hard. The skin looked bad and I was embarrassed to face people. The skin was very itchy and it was hard not to scratch off the flakes. The skin was tight and moving my mouth was hard, as it cracked.

The third and fourth weeks were a lot better. Instead of large flakes, the dryness was more powdery. I started having more faith in the process and a growing belief that I would improve with this method.

Unfortunately in the fifth week, my skin flared badly. It went back to how it was in the early weeks and oozed badly.

A couple of days ago I decided to resume moisturising. The effect was almost instant. My skin looked calm and clear. It felt nice too!

 The process has changed my habits forever though. I now realise how moisturising had become a "habit", whether I needed to do it or not. Every morning and night I used to slap on creams and I had top ups in my bags and on shelves around the house. Stopping altogether made me rethink my routine.

I am going to continue trying to use as little moisturiser as possible and will only apply it when I NEED to rather than as part of a routine. I also have a strict policy not to moisturise at night, as this is when the body makes its own oils and repairs itself. In practise, this may mean going several days without moisturiser, but not denying myself a dab of cream when I need it.

With this new method, I think I will get to a stage where I naturally don't need the creams anymore. I call it the "soft landing" method!

I'm also incorporating a few positive lifestyle changes including less junk in my diet, more juicing, more exercise and supplements of vitamin D to replace the sunshine I have missed. Hopefully these measures will have good results.



Here are the photos I took when not moisturising....

 

 

....and here are some pictures I took today, after using moisturisers again for a couple of days:

 

 

 

 

 

Please share your experiences of moisturiser withdrawal in the comments section. Have you tried it? How did you find it? Do you believe it can speed up TSW?

 

*When leaving a comment, please have respect for the opinions of others, even if they differ from your own. Trolling, sarcastic and bullying remarks will not be published and the person will be barred from commenting on future posts.*

More People Healed From Topical Steroid Addiction

This week, I have been really happy to read lots of stories from those either almost healed or fully healed from Topical Steroid Addiction.

Stories like this give the rest of us hope and prove that the process, tough as it can be at times, can have a happy outcome.

The first person I want to talk about is Josh from Australia. His blog is full of pictures and video logs charting his progress. I like Josh because he always has a positive spin on things. At one point, he was as red as a lobster and had lost a lot of his hair, but he was still smiling and positive. I really believe that his positive mental attitude helped him through this process.

Josh is healed from Red Skin Syndrome after 14 months of withdrawals. I am so happy for him and grateful that he has shared his story with us. I have a LOT to learn from Josh. I've got to be less moany and more upbeat!

My second success story of the week is the lovely Leizel, who jokingly calls herself "Leizel Lizard" because of her skin. I have been following her blog story and was so pleased to see her post yesterday with all her healing pictures on it. Please visit her blog to see her great photos. She is 12 months into withdrawals and her skin looks amazing. She is 90% healed.

Another special mention has to go to brave little Zainab, over on the "My Side is Greener" blog. She is so young, but has just finished her 7th month of withdrawals and is looking so much better already. She is such a cutie pie.

Please visit the blogs and see for yourself the great results that people are having when they stop using steroid creams after long-term usage.

If you would like to share your healing story or do a guest post on this blog, please leave a comment below or PM me on the Itsan forum and I will be in touch.

Public Humiliation...Just What I Need.....

So as you can see from yesterday's photos, I'm still in a bad flare.

I've been wracking my brains as to why I am flaring, especially as my skin healed in summer. The only pattern I can see is the fact that my flares have occurred in winter, as soon as the clocks changed for daylight savings and then my skin improves in spring again.

One of our healed Itsan vets was explaining how his skin improved in sunny conditions and used to get worse when he lived in colder climates. I think many have seen the same thing in winter.

I was recently reading Tracy S's blog about how she improved drastically by combining her no moisturiser regime with tanning sessions (her pictures are amazing, folks!) so I thought I would pop round to the local salon which is 5 minutes away from my house to find out more.

Anyway, I go inside and explain why I'd like to try the sunbed. The shop owner looked quite agitated and explained that they don't like to let people with "skin conditions" use the sun beds, then started frantically fumbling in the drawer to find her "disclaimer".

I continued to explain that I wanted to try I because my skin cleared up last summer and that a friend of mine had tried it and recommended it. She went into the back room and came back saying that the owner of the sunbed would not allow me to use it because my skin was broken. She referred to a small scab on my forehead, which you can see in yesterday's photo.

Luckily there was only one other customer in the shop, because I was starting to feel a little embarrassed at this point.

I can't see the problem, as I was quite willing to accept and take full responsibility for any risk associated with the procedure. Maybe they thought I was contagious!

Anyway, it was all pretty humiliating. She did add that if my skin improves I should come back, but to be honest, I have no intention of putting myself through that again.

Anyway, I've had a good cry about it and blogging is always cathartic, so I'm good.

My next plan is to get some vitamin d supplements to see if they help.

As always, I will report my progress.

What Happens When You Stop Moisturising Your Skin? (photos)

Today marks exactly one month since I stopped using moisturisers on my skin...