Interview #6: Maartje Francisco

maartje2016Maartje Francisco

Holland

“You will never get better until you stop trying to get better”

1.When did you start using topical steroids? And why?

I started applying when I was 16, because the doctors said I had children-eczema that I would grow out of eventually. So we used it for my neck and nipples.

2. What was the name of the topical steroid?

Bethametasone (potent 3)

3. Were you ever prescribed more potent steroids? 

When I was 24 I took a allergy-test with the derm and nothing came out so they gave me potent 4, dermovate. To apply on my hands/wrists.

4. How did you find out about RSS?

I’m a typical case of Topical steroid addiction, one day I googled this in Dutch first but I couldn’t find anything. I had a feeling I really needed the TS to make it normal again. For a while. But then it would come back within 5 days or so. I stumbled on the itsan website, saw the animated clip and it was such an eye-opener!

5. What made you feel you had RSS?

My hands and arms would gradually worsen and it burned, was bright red and spreaded like fire. With the dryness after every flare.

6. Were you diagnosed by a doctor? Did you have a supportive doctor?

No, I am a beautytherapist so this was a crazy but educational and inspiring ride for me! I found a great product for my company and skin and the manager in Holland of this product is Chinese and she knows a lot about TSW and the Chinese derms that dó treat this in different ways but without TS.

7. What were your first symptoms?

Itchiness, redness, and burning.

8. Is your family supportive? Friends?

YES! And it is oh so important, my mother is the strongest person I know and I couldn’t have done it without her. My husband, father, sister and kids have been by my side the whole ride. Some friends were interested and asked how it would go sometimes. But as we all know, if you don’t go through this you really don’t know what it is.

9. Have you ever been to a hospital for this? 

I made an appointment with a derm to get UVB Therapy. I got it at home! That was great for winter 2015.

Had a skin infection one time through TSW and I was on antibiotics for one week.

10. What has been the hardest part of this condition?

ITCHENESS! And the lack of sleep and almost no physical contact. But after all, the mental struggles on bad days are the hardest.

11. How long have you been in withdrawal? 

Im 31 months in now, but I stopped counting after 2 years, because it became bearable after that, and I got to do everything I wanted to do again. But I think I’m not healed yet.

12. What do you use as comfort measures during this?

Dermaviduals, my skinbarrier creams.

13. Are you employed? Has this affected your job status?

I have my own business. I worked throughout the whole process but of course it affected everything. But for the better…at the end.

14. Have you gone to therapy/wish to go to therapy because of this condition?

For a while, and it was more in a coach/mindfulness-way than a psychologist.

15. If there is one thing you could say to another sufferer, what would it be?

One day at a time, and time will heal!


Amazing interview! Thank you tons, Maartje!

Feature #12: Carol & Bara

carol-arsenaultCarol Arsenault

Age: 67

Career: Graphic Artist part time

When did you cease using topical steroids: May 2015

What type did you use: I used Ultravate for hand eczema and  clobetasol for my lip

What is your favorite product for comfort? Favorite product was neem cream and dead sea salts

What is the hardest thing to deal with during this condition? Hardest part was the itching, not sleeping, clothes bothering me and the constant thinking about suicide.

What is the first thing you are going to do when you are healed? First thing I did since being almost cured – visit my sister.


Bara Křepínskábara-krepinska

Age: 15

Career: studying book culture in high school

When did you cease using topical steroids: 1/26/2016

What type did you use: I don’t remember what I first used as a baby, but my eczema disappeared, then reappeared with puberty – I used mild steroids like Advantan on and off for 3 years

What is your favorite product for comfort? Hairbrush for sratching, comfortable cotton hoodies and pajama pants

What is the hardest thing to deal with during this condition? It happened the year I was finishing primary school. The hardest part was losing all the months I could have spent with my friends lying on sofa under blanket and eating ice cream. I lost time in my life I can never get back and I’m so sorry for it.

What is the first thing you are going to do when you are healed? I have lots of things on my bucket list! Get multiple tattoos, pierce my nose (and other body parts), cut my hair and dye it crazy colors, wear bold makeup, wear wool, lace etc, grow long nails and do different nail art every day, and take long showers and long baths !

Interview #5: Caroline Langdon

caroline-langdonCaroline Langdon

Adelaide, South Australia

“You are the sky. Everything else – it’s just the weather.” ― Pema Chödrön

1.When did you start using topical steroids? And why?

I was treated with steroid cream from infancy for atopic eczema.

 

2. What was the name of the topical steroid?

My mum thinks the first steroid cream was called Celestone.

3. Were you ever prescribed more potent steroids? 

Yes. All kinds. All strengths. For eczema.

As a young child I had severe eczema and was prescribed mild to strong steroid creams and ointments for different parts of my body. I think from around the age of twelve, I started using it on my face as I’d developed eczema there as well. Mostly around my eyes and mouth at that point. By the time I was a young adult I used steroid creams and ointments on and off, of varying potencies.  On my face and different parts of my body. By this time I knew steroids were not a great option long term and endeavoured to use them sparingly.

I tried all manner of things for managing my eczema naturally (without steroids), via nutrition, supplements, lifestyle, natural creams/potions etc…. but my skin would eventually become completely unmanageable after a few mths if not before. I would need to use steroids again to control my eczema, so that I was able to sleep, work, care for my children and function properly. They suppressed it, it worked temporarily/superficially, that is, until it didn’t. Such a vicious cycle.

4. How did you find out about RSS?

I typed into my computer something like: red, burning, severely itchy skin… and eventually stumbled onto ITSAN.

5. What made you feel you had RSS?

I was desperate to find out what was happening with my skin, it was not like the eczema of my past (though that was no walk in the park, this was much worse). It was often red, itching and burning. It didn’t matter how great my diet was or what else I tried, it kept getting worse and spreading to areas I’d never had eczema before. My asthma and hayfever were super bad on top of it. I’d always been an allergy prone person but I seemed to be allergic to everything! I was getting nowhere with the dermatologist I’d been seeing, except sicker and sicker. My skin was so unmanageable, it was affecting every facet of my life! He had me back on steroids telling me I had eczema urticaria and said, ‘Many people have to manage it with steroids the best they can the rest of their life, you’re not the only one!’ (I think this was meant to be comforting??). He put me on an immunosuppressant drug used for cancer and transplant recipients, which is what they give people with very bad skin conditions too I discovered but I agreed as was desperate.

My immune system was at such a low ebb, I felt so sick and run down and I had skin that was red, burning and incessantly itchy most of the day/night.

I indeed wanted relief but I didn’t want to be taking these drugs for the rest of my life, especially when I seemed to be getting progressively worse, not better!!

There had to be a better answer.

I was in such despair. I started googling my symptoms, things like ‘burning, red skin/ hives/ rash spreading to new areas/ relentless itching/ palpitations/ severe anxiety/ no sleep etc’ and found other people who described EXACTLY what I was experiencing and going through, the common thread having been the use of topical steroids.

Then I stumbled across ITSAN which was such a relief.

I had finally found a site and support group (so many people going through exactly the same thing as me!) that talked about Red Skin Syndrome.   The site linked many studies and medical publications about how Topical steroids can cause this condition in the body …..and people were finding a way to overcome it!!

Stop using them!! Ha, sounds easy right? Not so. If it were easy to stop them, I guess there wouldn’t be so many using them. Hardest thing I’ve ever done!! Also the best thing I’ve ever done!!

6. Were you diagnosed by a doctor? Did you have a supportive doctor?

No I wasn’t but my gp had seen me get progressively worse over time. When I told her that I believed it to be the steroids promoting the condition and shared info from ITSAN and others experiences with her, she found it to be very plausible, though she had never seen anybody else that was in the state I was in personally. She’s an Integrative Medicine GP so she was very supportive in monitoring me, etc. I don’t know what I would have done without her in those first 12 months, for moral support alone!

I had a great naturopath as well. Very lucky in this respect.

7. What were your first symptoms?

Spreading rashes, hives, red skin, burning sensation, crazy itchiness, sore eyes, poor sleep, heart palpitations, anxiety, depression.

8. Is your family supportive? Friends?

Yes, I’m so grateful to those who were/are.

I fell out of touch with many people though (or they with me). Mostly because I could no longer go out and socialise for quite a long time. It’s a very isolating experience in that sense.

9. Have you ever been to a hospital for this? 

In the early weeks of tsw, I was in a very severe state and had come up on the waiting list with the Dermatology Dept at the hospital.

After my previous experience with the dermatologist I wasn’t sure about going but was in such a bad way, thought I should keep the appointment because at that particular point, I felt like I was close to dying, no kidding! I had no idea how, or if the body could cope with this for much longer. Complete head to toe, burning, red, oozing and tremendous oedema. My face and entire body was filled with fluid and leaking it out everywhere at the same time. Nobody who knew me would have recognized me, I barely recognized myself. I walked in, in a knee length cotton night singlet, which was agony in itself. At home I couldn’t wear anything it was so painful. I looked like a maniac, itching insanely everywhere. The nurse at the counter got a cold, wet sheet and threw it over me, it was heaven for counteracting the heat in my body. By the time I was called in to see the dermatologist, I was shivering like crazy. I tried to explain that I had been reacting badly to steroid treatment and had ceased using any creams in the last few weeks.
They deemed me ‘critical’ and that I should be admitted immediately! I asked how they would treat me if this happened and they said with steroid wet wraps and oral cortisone.   I said that steroids were responsible for what had gotten me into this mess and so that was not an option really.

They basically said, ‘Oh well, if that’s not what you want we can’t help you today… but how do you think you will manage this by yourself at home’. I was gobsmacked, I thought they may have been able to provide some help or checking of vitals etc to make sure they weren’t sending me on my way if they were deeming me ‘critical’!

I said, ‘I don’t know, I guess I’ll go to my gp and get her to monitor me, make sure there is no infection, or something..’, to which they responded, ‘oh, your gp won’t be able to do anything for this’.

If you don’t want to be steroid tempted, hospital is not the place to go. I walked out and went home. It was truly the hardest yet best thing I could have ever done for myself.

10. What has been the hardest part of this condition?

The debilitating and painful nature of it, the fact that it unpredictably effects not only the skin but many aspects of the body’s internal and systemic functions. The continuous lack of sleep. The fact that it takes an undetermined length of time to recover from. Hmm, I guess there have been a few hard parts.

11. How long have you been in withdrawal? 

I’ve been in withdrawal since February 2014, so 33mths so far.

12. What do you use as comfort measures during this?

Tsw support groups have brought much comfort along the way.

Baths with Epsom and ACV (apple cider vinegar), icepacks, pressure bandaging, soft cotton clothes and bedding.

Sudocrem and Robertson’s skin repair ointment.

Meditation and drawing.

Good food.

Reading .

Many things but these are the staples.

13. Are you employed? Has this affected your job status?

I have been unemployed throughout tsw. Was unable to work and fortunate to be able to take time to repair my body. Have been doing some volunteer work but am only just recently beginning to seek work again. It’s been a financial drain of the highest order.

14. Have you gone to therapy/wish to go to therapy because of this condition?

Yes, I went to see a psychologist over the first 2 yrs. I found it to be really helpful in keeping me sane. Fortunately for me, he was very interested in nutrition and health, had a good comprehension of the impact prescriptive drugs can have on effecting body chemistry, health and well-being. It was an incredible support at a time when I really needed it, he provided good counselling space for me. He also used hypnotherapy in some sessions to help with pain and itch management. It made a dent.

15. If there is one thing you could say to another sufferer, what would it be?

The intensity subsides.

Time and perseverance definitely has its’ rewards, IT DOES GET BETTER!

Trust that your body has incredible ability to right itself.

Tsw is a lesson in loving patience, with oneself.

That was more like four!


Caroline, thank you! Such an in-depth interview!

Generic Brands: Are they really Equivalent?

When we are prescribed steroids, we sometimes choose to use the generic brand because it is cheaper. Why spend tons of money on the brand name if you can get the same cream for a lower price?

Well, we may need to rethink our bargain.

A study done in 1991 showed that not all off-brand topical steroid products hold up to their supposed counterpart.

From the abstract: “Six generic formulations of 5 topical steroids were compared for bioequivalence with their trade name counterparts using an in vivo vasoconstriction assay. Two of the six generic forms were found to show significantly less vasoconstriction then the respective trade-name topical steroids.”

Without even meaning to, you could be using a topical steroid that is less potent than the prescribed objective. I have not been able to find evidence that this has been rectified since the 1990’s. This is extremely troubling, something that needs attention if it is still an ongoing occurrence.

What is more discouraging is the fact that this relates to ALL generic drugs, not just to topical steroids.

In 2011, a Supreme court decision was made: If there is a side effect seen in a brand name drug, the company must place it on the label. However, the generic company is not under such law and does not have to share those findings on the label.

As explained by Dr. Roger Steinert in his article, Generic vs Brand-Name Drugs: An Ongoing Debate, he describes the fatal flaw of how generic drugs work. The FDA says that the generic brand must 1) use the same concentration of active ingredient as the brand name and 2) same route of administration as the brand name. However, they are not reviewed and are not as monitored as their brand name “counterpart”. This leaves an immense room for error.

So, next time you pick up that generic brand, remember what you are paying for. What a backwards world we live in…

 

Study From: A Double-Blind controlled comparison of generic and trade-name topical steroids using the vasoconstriction assay. Arch Dermatol. 1991;127(2):197-201. Olsen EA.

Feature #9: Will & Ashlee

will-hannahWill Hannah

Age: 5 1/2

Career: Pre School

When did you cease using topical steroids: October 13, 2015

 

What type did you use: Advantan and Eleuphrat  (high potency)

What is your favorite product for comfort? First two months “Simply Natural Oils” chickweed ointment. Month 3-4 Natural Shae butter. Month four moisture withdrawal. Epsom salt baths and wet wraps soaked in coconut oil for first four months.

What is the hardest thing to deal with during this condition? Will says sensitivity to the elements– wind, sun, rain etc. His mother says he hated zingers and the ‘fire ants’ feeling

What is the first thing you will do when healed? We went camping and swimming in the beach last weekend despite mild anniversary flare. IT WAS AMAZING!!! Living the dream already!!!


Ashlee Coxashlee-cox

Age: 26

Career: I’m currently unemployed due to TSW. I was a track rider/stablehand in a horse racing stable.

When did you cease using topical steroids: July 2016

What type did you use: I used various different types of TS, primarily Betamethesone, Diprosone and Prednisolone.

What is your favorite product for comfort? I find Dermeze Ointment has provided me some relief during TSW. Also cool baths.

What is the hardest thing to deal with during this condition? There are so many negative sides to TSW, it’s difficult to pick just one. For me it would be the utter destruction of my career and sense of living. Not being able to leave the house due to such severe skin for so long leaves its mark.

What is the first thing you will do when healed? The first thing I want to do when my skin is better is take up horse riding again! It’s painful not being able to spend any time doing the things I love.

Topical Steroid Label Part II

Class 1 steroids, like Clobetasol Propionate, will always be the ones you see in studies showing bigger problems than less potent classes. However, that does not mean less point steroids are super safe.

So, I looked up the insert for the steroid I used, Alclometasone Dipropionate, which is a Class 6 steroid (Classes range from 1-7, 1 being the highest).

“May be used in patients 1 year of age and older, although safety efficacy of drug use for longer than 3 weeks have not been established.”

Not…. been… established. That translates into “we don’t know anymore after 3 weeks.” Also, it should NOT be used in children under 1 year old (although my personal belief is to steer clear of steroids on newborn skin).

The insert says to apply 2-3 times daily. We still see wavering views on this subject, some research showing putting on steroids creams more than once a day does not increase the likelihood of it working, but actually just increases your chances of overusing. Source

“If no improvement is seen within 2 weeks, reassessment of diagnosis may be necessary.” This doesn’t say “if this isn’t working we will just give you more potent steroids,” it states that there my need to be a reevaluation. Speak to your doctor about such matters because it is unbelievably important that you are diagnosed correctly. Perhaps you need a swab done to see if you have an infection? Or perhaps you are allergic to something inside the medication, or to a chemical or food you are use.

“In another study, Aclovate (alclometasone dipropionate) was applied to 80% of the body surface of a normal subjects twice daily for 21 days (3 weeks) with daily, 12 hour periods of whole body occlusion.” The HPA axis decreased 10% in these patients. This is a Class 6, mildly potent steroid, and within 3 weeks there was HPA axis suppression. First, 80% is almost full body, and some doctors will tell you to do that. Secondly, what is a normal subject? Someone with healthy skin? If so, someone with eczema will be even worse off since our skin barrier is damaged. Source

One of my favorite quotes is, “Topically applied Aclovate cream and ointment can be absorbed in sufficient amounts to produce systemic effects.” There is that word again: systemic. This Class 6, mildly potent steroid, can start affecting our adrenal glands. If a doctor says this isn’t true, hand them an insert.

This insert also says the same thing as Clobetasol Propionate regarding child toxicity and infection warnings. It also specified that it should not be used on diaper dermatitis.

“The following local adverse reactions have been reported…”

Who reports this? I never have. Where are these reports being made, or sent? Who sends them? Patients? Doctors? I know when I’ve stated adverse affects I’ve been told I was wrong by a doctor, so I know they weren’t reporting what I saw. I can only imagine that the list given is much smaller and/or incorrect due to lack of reporting.

But, check this out, you CAN do something: REPORT YOUR ADVERSE EFFECTS

Overall, there seems to be many unclear and unknown scientific facts about this steroid (most likely for all, but I can’t speak fairly on that since I have not read every single insert). Are we as patients supposed to be fine about this? When doctors tell us they are perfectly safe when we have concerns and see adverse affects, what evidence do they possess?

More research, management, and reporting must be done for the safety of patients.

Not Just A Dermatology Subject

Dermatologists are not the only ones allowed to prescribe topical steroids. Other persons whom prescribe these drugs are general practitioners, our family doctor. However, they are not specialized in this area. We already know some dermatologists push past the guidelines, but GPs are even less educated on steroids and all of their adverse effects if overprescribed or prescribed incorrectly.

In the FDA Evaluation and Research paper, they point out how our GPs can be truly hurting us. “… family physicians frequently prescribed betamethasone dipropionate and clotrimazole to children younger than 5 years of age and for use on genital skin disorders.”

Not only should this super potent steroid be prescribed with utmost caution to adults, but then add an anti-fungal (clotrimazole) into the mix, and you’ve got mega trouble. NEVER mix antifungals with topical steroids, and never use a steroid on a fungal infection. It is also stated in topical steroid inserts to never use these topical steroids on the genitals since it is extremely sensitive and most likely under occlusion (diaper).

This paper also talks heavily about research they constructed from 202 cases. The median age was 7 years old, a mix of both genders, and drum roll…. A median of topical steroid use for 169.3 days. That comes out to a little over 5.5 months of consecutive use. The shortest time was 1 day, and the longest was 7 years. This is why people have steroid phobia from this type of disregard for topical steroid guidelines.

If doctors wish to have the trust of their patient, then patients need to see that doctors can be trusted. We are the ones who have to endure the consequences. We are the ones who will have to suffer. There has to be open and honest communication on a level playing field. So many lives can be saved from needless pain if topical steroids were not only used strictly by a guideline (NOT by someone’s discretion), but also to know that the guideline set is correct and appropriate.

 

 

The Symptom Game

When you are sitting on your couch watching television, an advertisement may come up for a new drug. Pay attention when this happens. Listen to the commercial and take note of all the side effects that new drug may entail.

You decide you want to take that drug despite the risk. But, suddenly, you have two symptoms pop up. Your doctor says not to worry, there are drugs for those symptoms. Now, instead of one medication, you are taking three.

Then, one of your new medications is bringing on a side effect. Your doctor says don’t worry, there is a drug for that symptom. Now, instead of three medications, you are taking four.

This is how the world goes ’round. You went from one problem, to four.

Ever read the story about The Little Old Lady who Swallowed a Fly?

 

There was an Old Lady, who swallowed a fly.
But, I don’t know why, she swallowed the fly. 
Perhaps, she’ll die!
 
I know an Old Lady who swallowed a spider.
It wiggled and tickled and jiggled “inside her.
She swallowed the spider to catch “the fly.
But I don’t know why she swallowed the fly.
Perhaps, she’ll die!
 
I know an Old Lady who swallowed a bird.
How absurd – to swallow a bird!
She swallowed the bird to catch the spider
It wiggled and tickled and jiggled inside her.
She swallowed the spider to catch the fly. 
But I still don’t know why she swallowed the fly.
Perhaps, she’ll die!
 
I know an Old Lady who swallowed a cat.
Imagine that!  She swallowed a cat!
She swallowed the cat to catch the bird.
She swallowed the bird to catch the spider
It wiggled and tickled and jiggled inside her.
She swallowed the spider to catch the fly.
But I still don’t know why she swallowed the fly.
Perhaps, she’ll die!
 
I know an Old Lady who swallowed  a dog.
What a hog!  She swallowed a dog!
She swallowed a dog to catch the cat.
She swallowed the cat to catch the bird.
Swallowed the bird to catch the spider
It wiggled and tickled and jiggled inside her.
She swallowed the spider to catch the fly.
But I still don’t know why she swallowed the fly.
Perhaps, she’ll die!
 
I know an Old Lady who swallowed a goat.
It stuck in her throat, that silly old goat.
She swallowed the goat to catch the dog,
Swallowed the dog to catch the cat,
Swallowed the cat to catch the bird, 
Swallowed the bird to catch the spider 
It wiggled and tickled and jiggled inside her.
She swallowed the spider to catch the fly.
But I still don’t know why she swallowed the fly.
Perhaps, she’ll die!
 
I know an Old Lady who swallowed a cow.
I don’t know how she swallowed a cow.
But, she swallowed the cow to catch the goat,
Swallowed the goat to catch the dog,
Swallowed the dog to catch the cat,
Swallowed the cat to catch the bird,
Swallowed the bird to catch the spider
It wiggled and tickled and jiggled inside her.
She swallowed the spider to catch the fly.
But I still don’t know why she swallowed the fly.
Perhaps, she’ll die!
 
I know an Old Lady who swallowed a horse.
She’s DEAD, of course!

-Recorded by Dr. Mike Lockett 

 

Down the rabbit hole, further and further. Always weigh out if your first initial problem is worth potentially incurring many, many others.

Feature #11: Gabrielle & Hollie

gabrielle-guisewiteGabrielle Guisewite

Age: 23

Career: Unemployed due to TSW, I worked as a Front Desk Manager for an alternative medicine wellness center until 5 months TSW.

When did you cease using topical steroids: End of July 2015

What type did you use: fluocinonide, triamcinolone acetonide, hydrocortisone

What is your favorite product for comfort? As much as I hate using it, Aquaphor – I wish something natural worked better, but not yet.

What is the hardest thing to deal with during this condition? Not being able to look at myself in the mirror because of shame and disgust and pure fear that I would never look like me again. Being in pain and discomfort every single day, leading me down the long dark path of depression and being suicidal; hating your life to an entirely new level where you know you are no longer yourself. When you don’t complain about how you’re doing so others automatically assume you’re doing better, and when you complain too much others get annoyed or don’t really know what else to say to comfort you.

What is the first thing you are going to do when you are healed? TRAVEL, ENJOY LIFE & HELP OTHERS WHO ARE GOING THROUGH TSW! I am currently getting my Health Coaching certification (this is partially due to my TSW experience) and I hope to help prevent this debilitating disease while encouraging others who are going through the journey. I will never take life for granted again and will appreciate every single day in an entirely new light.


Hollie Dixonhollie-dixon

Age: 38

Career: Teacher and a server

When did you cease using topical steroids: May 20, 2014

What type did you use: I don’t know for sure. I know I used a lot of the mild strength creams for my face, then I used Clobetasol and Mometasone for a bit after the rash had started spreading around my body.

What is your favorite product for comfort? Vaseline and gauze and Cerave lotion

What is the hardest thing to deal with during this condition? The hardest part was the unknown and the loneliness. I also feel inadequate and like I’m not doing my job to the best of my ability. I feel like I’m robbing my students of an education. Waking up, if I was able to fall asleep, and feeling the pain and the itch immediately. From the second I opened my eyes, it began. From the second I woke up I started thinking, “I can’t do this today”. The mental struggle is harder than the physical. Every day I wonder how much longer can I go on, but in reality I don’t have many other options.

What is the first thing you are going to do when you are healed? The first thing I’m going to do when I’m healed is appreciate not being in pain. Appreciate everything around me. Waking up and getting ready to leave the house in 30 minutes. Showering. Getting in and out of the car easily. Not having dead skin surround me 24/7. Get a massage. I’m just going to live and appreciate life.