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.

Interview #4: Robin Winkler

screen-shot-2016-11-09-at-12-36-22-pmRobin Winkler

Sugar Hill, GA

“…and never could I have known the taste of heaven, had I not swallowed the pieces of hell, first.”

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

I was first prescribed topical steroids when I was 17 months old- I had an allergic reaction to detergent in some clothes my mom was trying on me.

2. What was the name of the topical steroid?

I started out using triamcinolone- the pharmacy would mix it into Aveeno or Eucerin for me. I remember that my parents would put it all over my arms and legs every night.

3. Were you ever prescribed more potent steroids? 

As I mentioned, I had a nightly routine with my triamcinolone. It never stopped once it started, and became a norm for me. When I was about 10, however, my face started showing signs of ‘eczema’ so I was prescribed a different steroid called desonide for my face. Over the years, my eczema slowly consumed my entire body, and I would keep it at bay with triamcinolone, desonide, fluocinonide, mometasone furoate- you name it, I have probably been prescribed it. I also tried alternatives to topical steroids, such as Protopic or Elidel.

4. How did you find out about RSS?

I found out about RSS in May of 2015. I had a one year old, was working full time, was stressed, and I had used oral steroids for my skin. I actually got the shingles and then of course, more steroids. After the shingle was gone, I had a particularly bad flare, and none of the steroid creams were helping- not even the really, really, strong ones. So I googled “the steroids don’t help my eczema anymore” and it led me to ITSAN.

5. What made you feel you had RSS?

I observed the TSW/ITSAN Facebook groups and researched for a long time before I was determined this was indeed my same affliction. What I couldn’t ignore was the obvious rebound effect after stopping steroid use- and it was classic, and my skin matched every picture on the ITSAN site. The Red Sleeves are not something I have ever had with my original eczema. On top of all of these things was the fact that my original eczema had never affected these areas of my body before

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

I was diagnosed by a dermatologist with ‘steroid dependent eczema’ – which at least meant she recognized that I needed to stop using them. She was key in helping me come off of the steroids, but the only way to do so was to use an immunosuppressant- basically, a drug that people take when they have organ transplants to keep their bodies from rejecting the new organ. I eventually sought, and am still working with, a naturopathic doctor. He has been immensely supportive, calls my condition TSA (topical steroid addiction), has helped me find the root cause of my original eczema, and has even helped me do research about topical steroid addiction.

7. What were your first symptoms?

I had been on oral prednisone for the shingles and topical steroids for my eczema; as soon as I ceased using them, my skin peeled and cracked and was just so tight and dry. That was immediate too- within 24-48 hours of stopping. One week into stopping, and my skin was not only tight and dry and flakey but simultaneously oozy and waxy and hot – my face swelled, my entire face, neck, chest, arms, legs- all turned bright red and there was an unbearable nerve pain. Like a million razor cuts in every square inch of your skin, or a million fire ants biting all at once. It was basically a cycle of hot, red, oozy skin to the crusty, scabby, painful skin, then to flaky skin that fell off everywhere…and then back to square one with the intense inflammation.

8. Is your family supportive? Friends?

My mom and my brother have been amazing. I am a single mom, so when this started and I realized I wouldn’t be able to work, I moved in with my mother. She has paid for medical expenses, taken on the duty of caring for me when I couldn’t even take a shower. She has helped me with my son, and helped me financially as well. I know it has been a huge strain on every aspect of her life. Friends who have little knowledge of eczema or RSS in general are supportive, but wary. They don’t understand why I don’t use steroids or why I needed so much help from my mom, and can be quick to judge or criticize. I worry people will see me as entitled or lazy, since they have no idea what’s really going on.

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

I went to the ER on 1/29/2016. My scalp was green and yellow and bloody, my skin was peeling and cracked and bleeding from my scalp to my toes. I couldn’t eat. I couldn’t sleep. I couldn’t shower. I couldn’t even think straight because the pain was unbearable. My brother says I’m a tough cookie, so he knew that this was serious when he saw me crying from pain. It takes a lot of pain to make me cry.

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

This is a tough question. Ask me the easiest part. HA. From one aspect, just not being able to LIVE in any measure of the word has probably been the most difficult part to adjust to. I was working full time, I took my son to daycare and picked him up-everything, on my own. Once RSS took over, I couldn’t even do the dishes. The other part that was/is infuriating is the lack of knowledge and research about RSS. I joke that everyone going through this is like a lab rat, because we have to find out what works for us since there are no medical guidelines, much less real recognition from the medical community. The stress is also a lot- there were days I wanted to crawl into a box and literally die. There was financial stress- I couldn’t contribute to my own life or my sons life, and living costs money. I tried to get on disability several times (temporarily) but was never able to. There was emotional stress- I vividly remember lying in bed, in a lot of pain, and thinking, why should I be still and do nothing if its STILL going to hurt?? Again, naming the hardest part of this isn’t easy.

11. How long have you been in withdrawal? 

I started my withdrawal 8/12/2015. I would say I am about 14 months in, but I have used oral steroids during this time though, for asthma, and an anaphylactic reaction I had. I would not say that I am completely healed, but I am now about 85-90% better.

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

In the early stages, apple cider vinegar baths and zinc oxide paste (like desitin for babies) were life savers. As time went on, I was able to tolerate sea salt baths, and oatmeal baths. I really liked hydrocolloid bandages for very raw and deep wounds, as well as elaj (a highly concentrated oatmeal cream). As far as mental measures, I actually sought a health coach who helped me with stress management and meditation.

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

I was. I stopped working as a medical assistant purposefully so I could start my withdrawal. As I mentioned, though, I am a single parent so I tried to hold down a couple different odd jobs in the beginning, and I couldn’t. I’m hoping to return to work soon…

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

As I mentioned, I did enlist a health coach for 10 weeks. Now that period is over, however, and I find myself wishing I could utilize her again. So, yes, I think therapy would be helpful. To be honest, I’m still scared that I will wake up one day, full flare, back at square one with no eyebrows and hot painful skin everywhere. It kind of keeps me from diving fully back into my life just yet.

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

It’s hard to narrow my advice down to one pointed piece. I would say, take pictures. Even if you don’t share them on social media; keep them for yourself. I wish I had taken more. Also, I think a lot of this journey is hard because we feel like we have lost ourselves and any sense of a ‘life by OUR design’- but please, remember, you are still there and you are still YOU. The most important thing during this journey is to truly invest in yourself, even if you cant take time off work- don’t’ obsess over what other people will think. Take it one day at a time, one minute at a time, or one second at a time. Get through it however you have to- remember no one’s journey is the same and the only real goal is to restore health to our bodies without steroids.


Thank you so much, Robin! You’re interview was inspiring! 

Feature #8: Claudine and James

claudine-arcClaudine Arce

Age: 47

Career: ESL teacher and currently studying a Diploma in Holistic Nutrition

When did you cease using topical steroids: November 2014

What type did you use: Cortoderm, Clobetasol, Fluticasone, Hydrocortisone drops,Topiderm, Prednisone, hydrocortisone 0.5% and 1%

What is your favorite product for comfort? Irritable skin balm from Moo Goo and Edermaid face and body spray from Merry Clinic. and many supplements that helped my body during the process.

What is the hardest thing to deal with during this condition? The burning and never ending itchiness in the beginning was almost unbearable .  Having to sweep and clean every place I went because of the dry and flaky  skin. The emotional burden on me and my family. The 24/7 discomfort because of the irritation on my entire body was huge.

What is the first thing you will do when healed? Hug people, wear my clothes again and enjoy each day as never before.


James De Vuyst kames-de-vuyst

Age: 31

Career: Unemployed due to TSW

When did you cease using topical steroids: July 4th 2016

What type did you use: I used so many different types of TS including Elocom and Dermovate which I’m pretty sure are the strongest ones. I used them for about 3 years.

What is your favorite product for comfort? Ice packs and Vaseline.

What is the hardest thing to deal with during this condition? The pain and extreme discomfort from the itching and inflammation have been torture. The length and unpredictability of Red Skin Syndrome are also tough to deal with.

What is the first thing you will do when healed? The first thing I’ll do once I’m healed is  thank my family for helping me get through this awful process. I’m also going to thank everyone involved with ITSAN for spreading awareness of this mostly unrecognized condition. Without finding information about RSS online I probably would have lost my will to live.


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.

 

 

Feature #7: Paloma & Juli-Anne

paloma-macarioPaloma Rumsey

Age: 33

Career: Stay at home mom

When did you cease using topical steroids: November 5th 2015

What type did you use: Protopic (immnunosupressant) for about 10 years & triamcinolone acetonide for a few months

 What is your favorite product for comfort? I used a lot of Acquaphor, original brand of Walmart brand or RiteAid brand. Also bepanthen nappy cream

What is the hardest thing to deal with during this condition? Not being able to care or interact with my children and husband

What is the first thing you will do when healed? Take my babies for swimming classes and I will workout until I drip sweat


Juli-Anne Cowardjuli-anne-coward

Age: 49

Career: Artist and commended picture framer

When did you cease using topical steroids: 19th September 2016

What type did you use: Injected cortisone 6 months ( age 9), varyious topicals ranging from otc to most potent dermavate, betnovate, eumovate, hydrocortisone. Inhahled becotide, several courses of oral prednisone.

What is your favorite product for comfort? Dead Sea salt in the bath and sudo cream on the skin.

What is the hardest thing to deal with during this condition? There are many hard parts, not knowing how long, the intensity of pain, mentally crippling, all consuming. Not being understood by doctors .

What is the first thing you will do when healed? It is hard to say at the moment there will be lots of things I will look forward to I am sure one will be renovating our Spanish house,  but trying to help others and raise awareness of this disease

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.

Interview #3: Kelly Fasciana

kelly-fasciana-jpgKelly Fasciana

Pennsylvania, US

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

Roughly ten years old. I’ve had severe eczema since birth; however my mom tried to hold on being as natural as possible throughout my early childhood.

2. What was the name of the topical steroid?

I’m 24 now, and I have about 13 years of usage under my belt (quit when I was 23). I started off with the usual hydrocortisone ointment and triamcinalone for most of my later childhood. I’d say these two were actually used properly and sparingly as I had bouts of time with nice normal skin and usually only flared in the winter. Next we move to Cordran ointment 0.05% (flurandrenolide), which was used EXTENSIVELY in my late high school/college years. I’m talking multiple times a day, every day, for about 7/8 years. Not one doctor ever told me otherwise –so I just continued to get scripts filled like it was anything. Lastly diprolene cream 0.05% (betamethasone dipropionate) was prescribed to me around early 2015 when I was starting to catch on that steroids were causing me more harm than good. I only used this for a couple weeks before I quite steroids cold turkey. Also in 2014 and early 2015 I had multiple steroid injections and a couple rounds of oral prednisone.

3. Were you ever prescribed more potent steroids? 

See above.

4. How did you find out about RSS?

From googling uncontrollable, incessant, terrible, (etc) eczema in adulthood and stumbling across ITSAN, Cara Ward’s, and TReczema’s youtube videos.

5. What made you feel you had RSS?

I started to suspect I had RSS early Jan-March 2015. I would flare so terribly if I didn’t keep up with my incessant and inappropriate use of my steroids. I would have anxiety or panic attacks if I ran out and didn’t have a refill called in because I knew what was to come. I couldn’t go away or do anything without steroids. I was 12564641321% completely dependent on those tubes of cream/ointment. And was for years, and had no idea. I couldn’t tell you how many dermatologists I saw around this time. They all said I had uncontrollable severe adult eczema and kept trying to push the stronger steroids/immunos. I saw a naturopath, who agreed to stop the steroids, and pushed a million and one expensive supplements on me (which just killed my pocket and honestly didn’t ease the start of the tsw symptoms).

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

None of the derms I saw believed in tsw. “Intrinsic atopic dermatitis” has been my stricken supposed diagnosis my entire life.

7. What were your first symptoms?

Symptoms: red raw burning itchy oozing skin. The burning feeling is out of this world. In the beginning mostly my face, neck and hands were afflicted. The initial flare was from March 2015-May 2015. I then had a bit of a break, followed by a bunch of shorter, less severe flares. Suffered/suffering from severe anxiety, depression, insomnia, body temperature regulation, hair loss, eye problems. The overall pain was extremely difficult to cope with, and is still to this day. I constantly feel like my flesh is being torn from my limbs with every movement. I’m constantly on fire. I’m near constantly oozing from somewhere on my body. My entire life has been turned upside down. I do not live a life as a normal 20-something, and haven’t in a very long time.

8. Is your family supportive? Friends?

My family has been my rock through all of this. My mom has been my main caretaker. Helping me to bathe, wash my hair, feed me (at some points my arms and hands have been so bad I have very little use of them) and pretty much everything else needed to function on a daily basis. My older brother who is a pharmacist has been immensely helpful in helping me to research and learn new things every day. He is also an advocate for the dangers of topical steroids with his pharmacy customers after watching what has happened with me. And lastly, although tsw has seriously tested my relationship with my boyfriend, he has been there for support and encouragement through it all.

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

No, although family members considered taking me multiple times. I avoided going for a fear of just receiving more steroids because of the state of my skin.

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

Emotionally, I am so drained. I don’t feel like myself. I lash out at the people I love, the people who take care of me. Chronic pain and very little sleep really messes with your head. Physically, I feel like my body is failing me every day. Financially I am ok (for now) as I have managed to continue to work through withdrawal for the most part. I took two months off of work from 15-17 months. So I struggled with money for a short time, too.

11. How long have you been in withdrawal? 

I stopped all steroids March 18, 2015. Currently 19 months. I am no where close to being healed. Currently I am switching between immunosuppressive drugs to remain in a functioning state.

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

Pain meds (tramadol, vicodin), anxiety meds (ativan, paxil), anti-itch meds (allegra, benadryl, atarax), lots of zinc cream/bandages, lots of baths, lots of aquaphor.

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

I’m a vaccine specialist for a pharmaceutical company. TSW has tremendously affected my job, because unfortunately in the pharmaceutical industry it is important to look your best. I had to take an unpaid leave of absence for two months, as well.

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

At 19 months in, the emotional burden has really taken a toll. I have recently scheduled to see a psychology and psychiatrist.

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

If I could say something to another sufferer, maybe just beginning this journey, I’d say to just hang in there…. It seems like you can’t get through and I know how you feel. But the body is capable of amazing things and eventually bouts of healing and relief do happen.


Awesome interview, Kelly!

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.

Feature #6: Sally & Susan

sally-yirkaSally Yirka

Age: 33

Career: Nurse (opiate addiction field)

When did you cease using topical steroids: 10/3/14

What type did you use: Triamcinolone and Betamethasone 

What is your favorite product for comfort? Dead Sea Salt in the bath

What is the hardest thing to deal with during this condition? It has changed since the beginning months to now. Now the worst part is not the physical symptoms, though I still have them and they still suck, it is the mental battle. Currently battling some pretty heavy depression/anxiety.

What is the first thing you will do when healed? I have a whole list, but the thing I have been wanting most is a tattoo. Thinking of getting a tiny Elephant (can’t help but feel connected to them with all my Elephant skin) holding a phoenix feather in its trunk behind my left ear (we all are rising from burning ashes that is for sure).


Susan Ryzasusan-ryza

Age: 63

Career: Jewelry Designer, Crafts teacher

When did you cease using topical steroids: 9/29/2011

What type did you use: FML eye ointment, OTC hydrocortisone, 2.5% hydrocortisone, Rhinocort nasal inhaler, Asthmacort inhaler

What is your favorite product for comfort? I used Vaseline in the early months, then palm oil, then beef tallow. In the last few years, I decided not to put anything on my skin that I wouldn’t eat or at least be a pure, natural ingredient. I’ve been making my own cream mixing beef tallow, shea butter, avocado oil, sunflower oil almond oil and a few drops of lavender essential oil. I also use Hoskings cream (from Australia) on my eyelids. In the last few weeks, however, I’ve found that I’m better off with nothing most of the time, even though I still have dry, rough areas on my arms, hands and parts of my face.

What is the hardest thing to deal with during this condition? Itching! And lack of sleep the first 6 months. I only oozed twice for a day or two, so that wasn’t a problem for me. I also never had lack of energy.

What was the first thing you did when healed? See my friends. I was a recluse for a long time because I was so itchy I couldn’t sit still. Also, just sitting still is such a pleasure!

Feature #5: Levi & Alicia

levi-akkermanLevi Akkerman

Age: 7

Career: Student

When did you cease using topical steroids: September 6, 2013

What type did you use: Desodine cream, then ointment, then Triamcinolone

What is your favorite product for comfort? During TSW was Lemongrass balm and zinc balm from the Home Apothecary

What was the hardest thing to deal with during this condition? Nights are the hardest part of TSW, it’s like around 3am the whole body heated up with insane itch.

What is the first thing you will do when healed? Live life! We (his mother and Levi) got sporadic breaks between flares and we just tried to live happy and normal when we could. Went to Adventureland and swimming, but the best thing is just seeing his beautifully clear and smooth skin. I just rub it in disbelief and pure joy now.


Alicia Akkermanalicia-akkerman

Age: 38

Career: Homemaker

When did you cease using topical steroids: September 6, 2013

What type did you use: Desodine cream, then ointment, then Triamcinolone

What is your favorite product for comfort? Renew Intensive skin therapy lotion was my favorite product during TSW, and ice!

What was the hardest thing to deal with during this condition? I had swollen, oozing hands for the first year and was very handicap with 5 children, 1 going through full body TSW. Mornings were the hardest and would soak them in ice water to help numb the intense itch. I lived in cotton white gloves for about 6 months.

What was the first thing you did when healed? Mainly I am just so thankful for my hands now. Being able to cook and prep food again!