IID Conference 2018, PART 2

It was quite the struggle getting up Friday morning after the swift burst of excitement from Universal. We were shuttled back into the event location around 11:30pm. By the time we got home and I was able to shower/get ready for bed, it was past 12am. So preparation for Friday’s long events seemed arduous at the start of the day.

Once we were back in the venue, it was time to work. Kelly was alert and ready with a smile, manning our booth, and I was keen on hitting every poster and mini-symposium I could before we needed a food break (and I didn’t want to eat my weight in candy). Luckily, at the large Mary Kay symposium, I was handed a lunch bag!

The symposium was on air pollution and the effects it has on the skin, especially in places that are high in pollution like Asia, the Middle East, and parts of Africa. A few things that are affected by air pollution are eczema, skin cancer, uticaria, acne vulgaris. There was a study presented that showed how pollution in Saudi Arabia was contributing to obesity and type 2 diabetes. And if there is chronic traffic pollution, facial letigens were increased. Researches were trying to find out if anti-oxidants (a specific mixture for the skin) could help suppress pollution-induced issues on the dermis. For example, DEP exposure induces skin darkening and melanin production. An enzyme called CYP1A1 is shown to reverse this damage.

When I linked back up with Kelly, she was super excited to have spoken with the NEA (The National Eczema Association) and felt confident that our voices were finally being heard. Just 5 years ago, TSW was deemed a myth on their website. Then a few years later, they had a task force put together to investigate this phenomenon because so many asked about it. Now, we have TSW being discussed on podcasts and being seen as one of the 3 leading reasons for worsening eczema. We also, while seated at our booth, were able to speak to two separate men (a researcher and a professor) who are in works with natural remedies for our atopic issues. They both agreed that topicals were dangerous to mess with long term.

Friday night was the big talk given by Amy Paller entitled, “How our Increasing Understanding of Pathogenesis is Translating into New and Emerging Therapies.” There was a lot of repetition from the early lecture on atopic dermatitis, however she delved into a few other therapies a bit more, particularly JAK inhibitors. This can help reduce inflammation. There was a study done (and I don’t believe steroids were allowed to be used) where 90% of the participants had mod-to-severe atopic dermatitis. It lasted 4 weeks, 2x a day using the JAK inhibitor or placebo, and they saw that it seemed to do slightly better than tacrolimus.

Two other newer treatments were 1) Topical Tapinarof. It resembles coal tar and can improve the skin barrier, along with lessening inflammation. It worked 50% of the time, fully clearing or almost clearing patients. The other treatment is 2) Commensal bacteria. This was touched upon in the other lecture, but Amy Paller mentioned a treatment called Roseomonas Mucosa. It is in open label study that is sprayed on the fossae and showed reduction of bad bacteria and improvement of the local SCORAD, along with reduced steroid use! (SCORAD is one way researchers and doctors measure the success of a drug or treatment).

One treatment that has already been out for a couple of years is Crisaborale, or Eucrisa. It is a non-steroidal PDE4 inhibitor. The trial for the drug lasted 48 weeks, and showed minimal detection in the blood. I do not remember the percentage for the effectiveness of the drug, but I do remember it being a bit low.

She, too, brought up antibiotic resistance issues, as well as the side effects AD can have on children. It showed that some may be more prone to having ADD — however, that may be happening because of the large amount of antihistamines being prescribed to patients. There are also many studies showing that 16% of patients showcase anxiety, and 14% have depression.

Overall, her talk was informative of new treatments, but it’s easy to tell that she is still very defensive of steroids and their cherished use in dermatology. She had shared a slide about allergies/contact dermatitis, and topical steroids were on the list of culprits. She would not mention their name and quickly scanned over the slide. I feel it is really hard for many dermatologists to acknowledge how unsafe topical steroids can be because it has been engrained in their mind that this is the one effective drug that works for patients — the end all, be all healer of eczema. I do appreciate how hard some of them are working though to find better and safer ways to deal with atopic dermatitis, long term. Change is coming, and I am glad she is talking about it!!

Instead of staying Friday night for the dinner after Paller’s lecture, we called it a night and cooked together at the apartment. She and I were exhausted, both of us still dealing with our individual TSW issues. We still didn’t get to bed until very late, myself strategizing about the next day and trying to decompress (I bought a new TENS stem machine at the conference from a booth next to ours and I was using it while cooking).

Saturday was a bit of an unpleasant surprise. The morning was fabulous. I came in earlier than Kelly to our booth and ended up speaking to two separate groups of medical students who were looking around. They had never heard of topical steroid addiction before, one even stating that she was learning about steroids at that moment and nothing like this had ever come up. Such a red flag knowing this isn’t even being touched upon in a class. However, to my and Kelly’s dismay, we had another run in with why we are encountering so many unpleasant and arrogant doctors.

Dr. Steven Feldman, a man who is supposed to be a professional dermatologist who teaches students, was ABSOLUTELY APPALLING. He gave a huge lecture on atopic dermatitis. I knew it was going to go downhill (and I mean, steep-no-brakes type of downhill) when he gave us an anecdote about this one patient who was getting worse and worse despite the amount of steroids he was using, so Dr. Feldman admitted him into the ER on a Friday, lathered him in triamcinolone, and by Monday he was better. He goes, “… there are 3 reason why someone who is extremely atopic, has tried everything, and then is sent to the ER where they cover them in triamcinolone and suddenly clear up … 1) poor compliance 2) poor compliance 3) poor compliance.” He reiterated this ALL throughout the lecture. It was always the patient’s fault if they weren’t getting better.

I can not even touch upon the nastiness of his scorn and condescension towards patients. What upset me most is when I looked him up and saw how his practice is unbelievably two-faced. On one website that showcases Dr. Feldman, this is what is stated below his biography: Screen Shot 2018-05-20 at 7.39.13 PM

“Patients should recognize that physicians do care (even if it doesn’t seem that way.” — I witnessed this man show a presentation on how biologics work, turn to the audience with a prideful smirk and say, “We should play that video for patients. They’d leave with more questions than answers.” The little laugh that came out after just cranked up my anger.

“Sticking with one doctor and building a strong, trusting relationship…” — Trusting? He gave MORE than one scenario where he said he’d manipulate or lie to a patient. One instance is him manipulating the patient into using a new drug. He said if a patient was concerned about trying a new drug, he’d tell them an anecdote about how he JUST saw a patient in his office, in THE VERY SAME CHAIR they were sitting in, and they were using the drug and are super happy! YEA! *super sarcastic* The story didn’t have to be true; it would be told to ensure that the patient would be more swayed into taking the drug.

The biggest lie, which was told with SUCH condescension (like nails on a chalkboard) was  his policy on “skirting around” the steroid question. He literally stated that he wouldn’t answer the question “is this a steroid?” when a patient asked. Instead, he would say (and this is WORD FOR WORD since he said it SO MANY TIMES throughout the lecture):

*in a soft-spoken, patronizing tone*

“This is an all natural, organic, anti-inflammatory designed to compliment your natural healing mechanisms to bring the immune system back into balance and harmony because I like to take the holistic approach to the management of patients with skin disease.” BUTTTTTTTT then he’d add on “gluten-free, made in a nut-free facility” if they dressed like a hippy and were from California. ANNNNDDD THENNN, he’d add on, “made in America” to anyone who was wearing a red hat that said make America great again.

How unprofessional is that?

And this is a man who is EDUCATING students! The whole lecture itself counted as a continuing education course!!! Everyone that needed a continuing ed credit could receive one at the end by filling out a survey!! Despicable.

How are we supposed to trust doctors when this is what is happening behind our backs? We weren’t allowed to film the lecture. Why? Because then THIS type of behavior would be exposed? This was my reaction afterwards:

It truly brought our fighting spirit out that afternoon. These are the kinds of doctors so many sufferers are up against in the office. When we are told to hold a conversation with our doctor, THIS is what most are met with — haughty, know-it-alls who blame the patient for everything! We are the reason for our suffering, not them. They are devoid of any responsibility. Not all dermatologists of course are in this man’s category, but it’s very apparent that people who share his views are scattered all around the United States.  It’s dangerous allowing him and others like him to be the leaders of ‘continuing’ education.

I needed to have a quick ‘harness-yourself’ moment before Kelly and I got ready to sit through 2.5 hours of atopic dermatitis poster discussions. We were at the end of our ropes and tired but we managed to get through them! We couldn’t miss out on those while we were there.

There were 11 poster presentations in total. I’ll give snippets of each (if there were things of importance to share.)

1. How most adults with AD have it mainly on their face and neck. So they were trying to target certain genes that may be linked to this. They found 3 specific ones to re-sequence that may help these types of patients.

2. Talked about OX40 inhibition (one of the biologics are targeting this) and how it may be helpful to those with T-cell driven AD. The clinical trial was very small, though. More trials still need to be done.

3. Talked a lot about IL-22 expression and trial being done. I have a feeling steroids were used during the trial, and they also said IL 22 by itself isn’t significant, but if it’s tied with other cytokines, it can play a role.

4. Spoke about JAK inhibitors — they reduce IL 2, 4, 6, 13 and 31. They had 419 participants in the study but many were dropped because they didn’t allow rescue medication, and they were transparent with the fact that once the person stopped the drug, they went back to baseline (meaning lack to their original state).

5. Spoke about PAR2 over expression and how it shows dysfunctional barrier, entry of allergens, which then activates immune response (mast cells go up), and then ends with deterioration of barrier.

6. This one was a bit overly scientific for me to fully follow. Spoke about Suprabasin (SBSN), an amino, and how nickel absorption is heightened in mice that are deficient in SBSN.

7. This speaker was talking about pH balance, but his accent made it difficult to follow, sadly.

8. Discovery of filaggrin loss of function variants in Hispanic and African American/Native American children with AD – High prevalence in central and south America for AD (which maybe can be because these places may not have regulation of steroids? — just my thinking). There are 3 known filaggrin models (10, 11, or 12 repeats). High loss of filaggrin in Asia and in some parts of Africa. The frequency of FLG loss of production is enriched in mod-to-severe AD observed in kids. Basically, she’s found 6 different discoveries in variants.

9. AD is associated with fragile homes in US children – Can worsen with anxiety and stress, and create financial burden. Higher odds of AD in children living with single adult families, non-biological fathers, unmarried mothers, and single mothers. Stress can trigger early childhood trauma and genetics. (There is a chicken or the egg scenario here though, depending on how in depth this study went — did the children have AD which caused a rift in the household ,thus playing a role in the couples splitting? Or did the couples splitting worsen the child’s AD due to stress?)

10. Another study on Staph aureus and how different good bacteria may help — such as S. hominis and S. epidermidis.

11. Another Dupilumab study and safety profile. They only seem to see a slightly higher prevalence of conjunctivitis in patients who use the drug. About 10% I believe in the trials had this side effect.

Once all the presentations were over, we went to the closing ceremony (which many didn’t care to attend), and it seems this is the last IID conference. They are now calling it the SIID (I believe) and it will be held in Tokyo in 2022. The next SID conference will be held in Chicago next May. I’m sure ITSAN will be attending, hoping to make even more connections.

As we were walking to our cars, Kelly asks, “Want to get Pho?” My mind was so cluttered and overwhelmed, I just stared blankly and couldn’t even recall what pho was. I’m glad she suggested it — delishhh. What the doctor ordered.

The conference was a wonderful experience (with a bit of sour thrown in). I think we still have a ways to go, but it is refreshing to see curious med students and other doctors who see what an issue long term use of steroids has become. There are still those steadfast, obstinate doctors who aren’t able to look past archaic ideals and views, but we will prevail one day for the betterment of treatment and patient care. #IID2018

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It was an honor so sit beside ITSAN. They have been doing such a stellar job being professional while advocating for Topical Steroid Withdrawal. It’s not an easy road they are on. Changing minds in a tactful and responsible way for the sake of saving others from pain and years of suffering is extremely commendable and worthy of a round of applause!

IID Conference 2018, PART 1

This past week, Kelly Barta and I attended the International Investigative Dermatology Conference in Orlando, Florida. Kelly is the new President of ITSAN, the International Topical Steroid Addiction Network. We had met on two other separate occasions, so I trusted the week would be filled with both fun and advocacy.

On Wednesday night, we entered the Rosen Creek Hotel dressed in our best and hoping to mingle. To say the conference was packed is an understatement. Doctors and researchers from around the world were stuffed into the open buffet and bartended area, chatting and greeting old friends. We figured out there must be around 3,000 people present. Our mingling strategy was a no-go since there was not much opportunity to interject into already matured conversations between colleagues. We however caught up amongst ourselves and shared our thoughts of what we expected, what he hoped would come to pass, and how to best utilize our time at the conference. Kelly had already set up a fabulous booth in the poster presentation room and all we had to do now was make an impression.

Thursday was our first long day of the ‘marathon’. With Kelly being such a warm and intelligent conversationalist, I would leave her to man the booth while I attended some of the smaller poster sessions and mini symposiums. I was interested to see what else was happening in the field of dermatology surrounding the skin (that perhaps could intersect with our advocacy). There were LITERALLY over 1500 posters being showcased, all with different research topics. Quite overwhelming for an onlooker who didn’t understand every facet of research or jargon being used. The only place I felt confident was at the Atopic Dermatitis presentations.

That night, before the IID shuttled us off to The Wizarding World of Harry Potter, we had a large lecture on Pathoimmunology and Management of Atopic Dermatitis. There were 4 different speakers: Emma Guuttman-Yassky, Jonathan Silverberg, Eric Simpson, and Amy Paller. They are some bigger names in the AD community. Many topics were discussed during this blocked period, most of which were echoed and further looked at in other sessions. One is the two main categorized causes of AD: The INSIDE-OUT, and the OUTSIDE-IN. The former comes from a Type 2 response in the body (like allegories) and all the different IL pathways. IL stands for interleukin, which are certain glycoproteins responsible for immune response. There are many ILs that seem to play a role in AD and other autoimmune issues, such as psoriasis. The latter cause stems from our epithelial barrier and innate immunity– things like filaggrin, which are what help seal out allergens and irritants from entering our bodies.

One huge element I took away from the lecture was “AD (atopic dermatitis) IS REVERSIBLE AND IMMUNE DRIVEN”. That word, reversible, is a word filled with hope. So many patients have heard doctors tell them that they will be on steroids for the rest of their life because eczema is incurable. But, if we can find a way to reverse the damage, it will be a day of joy. I truly hope in the next decade we find out how little we will ever need to prescribe steroids since we will have found safer and more effective drugs that target the causes of our symptoms, not just the symptoms themselves.

At one point, when they were discussing statistics (adults with A.D.: 7%/Children: 15-20%), they were not sure why A.D. was becoming more persistent into adulthood. All I could think in my head was: steroids. If patients are being treated constantly with steroids, some are sadly going to be in the steroid-induced eczema column. They also gave statistics on our lack of sleep and teetering concentration throughout our work days. 90% of sufferers said they experience sleep loss 1 night a week. 50% said they experience sleep loss 5 nights a week! What a large number!

The hottest topic however was new treatments being studied or already in trial for helping relieve patients with atopic dermatitis. The one we already have available in the United States is Dupixent (Dupilumab), which is an injectable treatment that targets IL 4 and IL 13, two culprits in AD inflammation. They are seeing it help around 50% of patients (noticeable to massive improvement), and studies that even show improvement in filaggrin production.

The drugs that are in phase trials going on are the following
(name of drug: the IL it targets):
Tralokinumab: IL 13
Lebrikinumab: IL 13
Mepolizumab: IL 5
Nemolizumab: IL 31RA receptor
ANBO2O: IL 33
Tezepelumab: TSLP
GBR830: OX40.

So many!! And these are just the monoclonals (or also known as biologics). You may be wondering why we have so many IL targets that differ, and it’s because not only can many play a role, but different ethnicities have issues with different ILs. One drug may work wonders for one person, but it may not help another very much. Doctors and researchers are doing their best to tackle this puzzle.

Something I did not enjoy hearing about with these trials however is that many allowed steroid use. So, when you see the number 68% in the placebo group, it’s not because it was just a psychological improvement, but because they were using steroids when needed. How are we supposed to know the efficacy of a drug by itself if steroids are also being used in tandem? Not all trials but too many to count are allowing this. Nevertheless, it still seems to be helping some individuals who are now off of steroids because of it. That is a plus.

Another stellar branch they are trying to utilize is bacteria. It has become apparent that Staph aureus (Staph au.) plays a part in irritating atopic patients. Many doctors present spoke about the need to keep antibiotic-resistence at bay, so this new study (hopefully going to be conducted within this year) is going to be using good bacteria to try and combat the bad bacteria. Different strains of bacteria are able to fight against Staph au. and a couple in particular will be in the trial (I am not sure exactly the one that will be in the trial, but I believe it will be Staph hominis or Staph epidermidis). Exciting times!

At the end of the lecture, Eric Simpson allowed us to partake in an electric quiz. He gave us a scenario and then asked us (mind you us meaning a room mostly consisting of AD dermatologists or researchers) to answer a few questions surrounding what treatment route we would take for the patient. So, this patient in particular had used plenty of steroids, the scenario even including that he had taken oral rounds of steroids. Now, this patient is coming to see you — Your first step at the new office would be?

a. Repeat course of oral steroids
b.Consider patch testing
c. Start ustekinum
d. Biopsy

The majority of us (including myself) put B — patch testing. However, 16% answered they would do ANOTHER round of orals. Right there, in that room of maybe 100 people, that many jumped straight to the easy go-to that was obviously NOT working. It blew my mind since the % for answer “a” should have been 0%.

Then, he gave us a new scenario (I can’t remember all the criteria), but his first question was “You think the patient has AD. Your first line treatment for this condition would be”: and 58% stated topical steroids. It is still very much the go to, first line treatment. I was sad to see this, but this is what is taught. And it doesn’t make me sad because I think steroids are evil — that’s not my thought process. It makes me sad because when they are given steroids, it is most likely going to be for a much longer prescription than advised by the FDA guidelines (which is around 2-4 weeks of use). However, I was pleasantly surprised/perturbed by the next question: “He fails aggressive topical therapy, what is your next form of treatment?” Great, right! He is saying if the patient fails the first prescription, you move onto the second and not keep the patient on steroids forever! But, vaguely, what does “aggressive” therapy imply? Quick but super potent dose? Excessive use of steroids at different potencies? That part did catch me off guard. And his answer for the question was Phototherapy. I wish that would be considered as first line treatment and not steroids — but it can be impossible for a patient to do since it requires coming in 2-3 times a week for a short burst of UV treatment. Inconvenience, cost, and slower progression in skin repair is NOT what we want (or can sometimes even have as an option). We want the RIGHT NOW, which is steroids. They are quite the temptation. But that was the ending of the conference day, educational wise.

During the day on Thursday, while I was out scouring the posters and soaking up as much lecture information as possible, Kelly did a stellar job networking! I am in awe of her skills. She has a knack for starting conversation and speaking fluently with any stranger. She was able to talk with a few different doctors who were aware that steroids were not the chronic bandaid patients should be dawning, and thankfully she had a wonderful talk with two women from the Psoriasis group! Plus, a plethora of individuals came by the table checking out ITSAN case studies printed out in a binder, ITSAN brochures, and even USB drives with the case studies loaded on them. I’d say it was a pretty successful Thursday! Plus… Universal Studios!

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(stay tuned for Friday and Saturday)

Also, I am not on ITSAN’s board and do not speak on their behalf. We are both advocating for the same cause and I am honored to be working beside them in raising awareness. 

Interview #15: Keina Sabay

Keina SabayKeina Sabay

Manila, Philippines

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

As far as I remember, I started using topical steroids in mid-2014. Unlike most people who started getting eczema as a kid, I only started to experience it when I was already 27 years old. It all started when I got insect bites from a trek that I did in December of 2013. The bites morphed into rashes that became eczema later on.

2.  What was the name of the topical steroid?

I can’t remember the exact kind, but it was a mixture of clobetasol and some other substance. The thing is, my dermatologist would just hand out the creams to me and tell me to apply them twice a day without discussing what they were and without warning that they should not be abused. I may have overused the steroids, as sometimes I would use them more than twice a day.

It was not until a few months later that I realized that these were actually steroids that I was putting on my skin. The same doctor also prescribed Iterax (I think it’s Aterax in the US) to help with the itching and sleeping problems.

3. Were you ever prescribed more potent steroids? 

Yes. I decided to stop steroids in November 2014 when I consulted a holistic doctor. But in March 2015, I experienced my first TSW flareup and I ended up going back to a dermatologist. My face was so red and swollen, so I was desperate to feel better. She prescribed a clobetasol cream plus Prednisone. It worked like magic, but my skin would just become worse later on.

4. How did you find out about RSS?

I was searching for natural remedies online and came across Briana’s story. Before I found out about RSS, my holistic doctor had already told me about the possibility of a healing crisis, where my skin would get worse before it starts to get better.

5. What made you feel you had RSS?

The eczema started from insect bites on my arms and legs, and that was where I’d get the rashes. But after stopping steroids, I started getting bumps on my face as well and after a while, my whole face had become one big rash. It was red, swollen, and weeping the whole time. Then my skin would crust over and I’ll have these flakes coming off.

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

My dermatologists would diagnose it as eczema or dermatitis and just give me medication for my symptoms. My holistic doctor, however, made me go through blood tests and assessed that what I was experiencing was chronic inflammation that stemmed from imbalances in my hormones. This doctor was very supportive in helping me overcome my condition with lifestyle changes, proper nutrition, and supplements.

7. What were your first symptoms?

Patches of red rashes on my face, arms and legs.

8. Is your family supportive? Friends?

I am so lucky to have supportive friends and family. My mom took care of me when I was at my worst and couldn’t take care of myself. She prepared my food, washed my clothes and helped me research natural remedies for my condition.

My friends would always consider my food restrictions when we go out for dinner. I appreciate the simple gestures such as letting me pick the restaurant so I’m sure there was something I could eat.

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

Thankfully no. There was just that one time when I went to the ER because the insect bites morphed overnight.

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

I’d say the hardest part was putting my life on hold to focus on healing. It affected so many factors in my life such as my overall disposition, my finances, and my self-esteem. I was used to being independent, so not being able to take care of myself was a painful blow.

11. How long have you been in withdrawal? 

I first stopped steroids in November 2014, but I went back around March 2015 before stopping them for good. That’s a little over 2 years.

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

Epsom salt baths helped a lot to dry up open sores. I also used VCO (virgin coconut oil) to moisturize dry patches. I also cut my hair short so it wouldn’t irritate my face. Early last year, I discovered hiking and it played a big part in my healing. Being tired from the hike helped me sleep better and the following day my skin would always exhibit a marked improvement. I’ve been hiking at least twice a month since and I am almost completely healed now.

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

I was working in TV when this happened. I had to take a leave for 1 month, which extended to 5 months. I quit my job eventually.

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

I didn’t go to therapy, but I did make major changes to my lifestyle.

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

Listen to your body. Whatever is happening to your skin is a manifestation of what is happening inside. My doctor also told me this, healing is marathon and not a sprint.


Thank you for such a wonderful interview, Keina!!!!!

Feature #31: Magda & Elspeth

Magda RoszMagda Lima

Age: 23

Career: Property Manager

When did you cease using topical steroids: April 2016

What type did you use: I’ve only used steroids topically: Hydrocortisone- eyelids, neck , Betamethasone valerate and many more but I can’t remember them all. Immunosuppressants : elidel, protopic

What is your favorite product for comfort? Dead sea salt + Himalayan salt baths, castor oil, calamine lotion- when oozing, tubular bandages

What is the hardest thing to deal with during this condition? The hardest part for me was first 9 months when I was red from head to toe, horrendously itchy and I could not sleep! I am now 12 months in and still having good and bad days, the worst areas now are face, neck and hands.

What is the first thing you will do when healed? Put make up on! Enjoy my life again!


Elspeth JellisonElspeth

Age: 35

Career: Speech Language Pathology Grad Student (Finally graduating May 2017 – Woo-hoo!)

When did you cease using topical steroids: July 7, 2016

What type did you use: OTC hydrocortisone, Dermasmoothe, Clobetasol .05%. Also used Elidel and had 3 or 4 short bursts of oral steroids. This was all during a year and a half period.

What is your favorite product for comfort? Safe Soda (Pharmaceutical grade sodium bicarbonate). I started using this around 8 months TSW and it really changed my life. Funny Youtube videos also saved my sanity during my toughest periods of TSW.

What was the hardest thing to deal with during this condition? The hardest part of TSW was the feeling that I wasn’t even me anymore. I was in so much pain and so sad all the time that living felt like a chore. I also hated how I felt I couldn’t be there for my husband and son the way I wanted to be.

What is the first thing you will do when healed? My skin has already improved enough to accomplish my first goal which is to enjoy a vacation with my family. This weekend I’m going to go get a dog, which I’ve wanted to do for ages but haven’t felt well enough to for a long time. I still have some left to go on my healing but I’m grateful to be able to enjoy life again.

 

Interview #13: Nina Nelson

N.A. NelsonNina Nelson
Darien, CT

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

I first had eczema as a child but really didn’t use anything for it other than Keri lotion since my parents believed it was just something I had and there was no “cure.” Around 8th grade it disappeared. It reappeared when I was 30 and pregnant with my first child. The top of my hands became very itchy. The doctor didn’t want to use topical steroids, so he prescribed Protopic. At first Protopic worked beautifully but after a week, it started to burn and make my skin even redder, so I stopped using it. My hands got better on their own.


2. What was the name of the topical steroids? 
Protopic.

3. Were you ever prescribed more potent steroids? 

After the birth of my daughter, my eyes became very itchy and red. I saw ophthalmologist after ophthalmologist. They diagnosed me with dry eyes and ocular rosacea. The eye drops (Restasis and over the counter wetting drops) they put me on didn’t work. So I saw a specialist from Yale. He tried the same things the other did…in addition to antibiotics ointments in case it was conjunctivitis. Still my eyes didn’t get better. In fact, they got worse. Finally, the doctor put me on a compounded steroid ointment. Didn’t help. We moved on to steroid drops. This whole eye thing went on for about 2 years. After awhile, he said he didn’t know what to do and that he didn’t want me on the steroid drops any more. I didn’t either, so I stopped.

That’s when the skin rashes started. And I saw dermatologist after dermatologist. And allergists. And gastroenterologists. And naturopaths. And acupuncturists. And neurologists (lupus).

Through it all, I was prescribes topical steroids, oral steroids, and steroid shots. From low potency to high potency, for my face, my scalp, my arms, my hands, my legs, I’d walk in and doctors would say, “Whoa, first we need to get rid of this flare with a steroid shot/round of prednisone, then once we get you back to normal, we’ll get you on some creams.” Of course it would work, until the steroid shots/pills wore off and then it would start all over again. And I kept trying different doctors thinking maybe THIS one will have the answer. Nope.

4. How did you find out about RSS?

One day I was googling online and I don’t even remember what I was googling…itchy rash on face/hand/shoulder maybe, and I saw an image of a girl with red circles around her eyes and a “muzzle mouth” just like mine and I thought, “That looks just like me.” When I went to the page, it was the ITSAN site and the more I read, the more I realized that this is exactly what I had…what NO doctor had been able to diagnose me with—even the best-of-the-best-who-other-doctors-referred-me-to-who-didn’t-take-insurance-experts in New York.

5. What made you feel you had RSS? 

When I read the symptoms and the history and saw the pictures of all the other people who were going through this, the similarities were too many to ignore. With every new bit of information or every video, and every study that was linked to that site, I kept saying, “This is me. This is me. This is exactly what happened with me. Oh, my God. I know what I have. I’m addicted to steroids.”

I was actually excited. Excited that I finally figured out what it was after all these years of knowing something wasn’t right but not knowing what it was. Excited that there was a cure. And I was ready to stop steroids that minute.


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

I was never diagnosed by a doctor. I had compiled a book of the past 12 years of medical visits, prescriptions, and pictures of me in various stages of flares and when I took them to my GP she looked at them and listened patiently to what I had to say. She said she didn’t think I was over prescribed or that the doctors did anything wrong, but she believed me and was very supportive in my decision to quit steroids and said that she would support me in any way to help me get through this. This included prescribing a low dose hydroxine for the itch and the insomnia and an anti-depressant if I got too low. The hydroxine didn’t really work for me and I never filled the anti-depressant prescription, but I was so grateful for her time, patience, and response. For the first time I felt like I was being heard and taken seriously.

7. What were your first symptoms?
Itchy eyes and then an itchy rash on my face, my scalp, and all over my body.

8. Is your family supportive? Friends?

Yes, although there were some definite rough patches in my marriage

I think the hardest part is that without an “official” doctor’s diagnosis, the withdrawal is not taken as seriously as it would be otherwise.

Obviously, we are sick…we look sick, but I don’t think people realize just how sick we are—on the inside as well as the outside. They don’t realize how exhausted we are from the damage done to our adrenal system and the lack of sleep; how our confidence is gone because we look and feel horrible; how we are in a physical and mental state of torture because of the itch, and the nerve zings, and the sweats, and the cold chills, and the above things I already mentioned. There is no WebMD site to go to that explains that this is absolutely debilitating and patients need time off work and from family responsibilities to heal.

There’s no rehab center for steroid withdrawal like there is for other drug addictions, or pamphlet to hand to family and friends that explains what to expect.

And I felt guilty that I couldn’t be the wife my husband married, or the mother I used to be. But I also put my foot down and stood up for my health and myself. I demanded the time and the rest and the passes from a lot of things and this created friction. I spent huge amounts of money on dead sea salt and water for daily (sometimes twice daily) baths. But I believed so strongly in this diagnosis and my body’s ability to heal and I knew all I needed was time.

And that’s the second hardest thing about this fight…it takes a long time and that’s hard on spouses who are also losing out on time and life for an illness that is not even recognized by doctors.

But yes, my family was supportive. I hid out mostly from society at the beginning. I was so embarrassed that only my closest friends knew what I was going through. Even after I went public on FB and shared my pictures, my story, and all the links with people so they could share with others, I tended to be less outgoing than I used to be.

But that’s gotten better as my skin has gotten better and more time has passed. Now, I go out all the time even with a flare. Who cares anymore? Judge me, don’t judge me. I’ve been to hell and back; your opinion doesn’t matter to me.

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

No, I was lucky. I never had to be hospitalized. I kept infection at bay by taking Dead Sea salt, apple cider vinegar baths. And I’ve gotten cold sores since I was a kid, so I have a backup stash of Valtrex to turn to so I never got eczema herpeticum.


10. What was the hardest part of this condition? 

Phew. I have to pick one thing? I’d say not having the energy that I used to before I got sick. The brain fog was tough too…I wondered why I didn’t have the mental clarity. I guess the hardest part was not being my best person and feeling like I was missing out on life because of it.

11. How long have you been in withdrawal?

I will start my 28th month on Jan 18th, 2017, so I have 2 years and 3 months behind me. I began November 19, 2014. Every morning I put a big X through the day before as I marked the days off. It gave me strength to see all those crossed off days.

When I discovered RSS, I was on the first day of a 3-day shoot for a popular sleep aid commercial—I was playing the role of the wife of the man who couldn’t sleep. I tried to stop the topical steroids that day, but my skin immediately rashed up and my husband said, “Nina, you can’t do this to these people. They’re paying you to look good. You have to take it for the next three days.” He was right; I had a professional obligation not to show up looking like I fell into a patch of poison ivy, so I sparingly used the topical steroid until the last day of the shoot and then I stopped cold turkey.

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

Dead sea salt baths have been my oasis. I’ve done 20 min DSS baths since day one and am still doing them. I also did moisture withdrawal up until about 3 months ago. Now I feel my skin is healed enough that I use an essential oil mixture on it: jojoba, geranium, lavender, frankincense, myrrh, carrot seed, pomegranate, Vit E.

I also competed in 2 triathlons during this and I know the swims in the ocean and the pool helped to dry out the ooze. I think yoga helped with the detox and the running helped with the lymphatic system…not to mention all these things helped with my mental state. It gave me some power and control over my limited lifestyle. I itched like crazy during the workouts but I felt stronger afterward.

Rest. When I felt exhausted, I knew my body was going through a big healing push, so I slept. I felt so guilty sleeping during the day, but I knew it’s what my body needed, so I dealt with the guilt. I still got up every day with the kids for school, but sometimes I’d fall right back into bed after they left.

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

I was a commercial print model and actress so yes, I had to book out with my very-understanding agent this entire time. She’s been a big champion of mine and I’ll return to it when I’m sure I’m better. The good thing about commercial modeling/acting vs. fashion is that you never get too old—you can always do denture, arthritis, and grandmother commercials. ;D

I’m also a writer, so I was able to do that from home—although the brain fog was a real butt-kicker.

Because of having to give up the modeling, I ended up picking back up with a past job of mine, which is teaching hydrofit classes. I’m teaching twice a week at my local Y and loving it. It gets me out of the house, pays me, and gets those endorphins going…all things that are vital for my happiness.

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

No, but only because several times daily, I turned to the ITSAN and Topical Steroid Withdrawal Facebook pages for comfort. Just hearing about other people going through the same thing I was made me feel less alone during this. Posting on my own FB page helped as well. Social media was my therapy.

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

Stay strong. Head down and do what you need to do to make yourself comfortable. Eat healthy; sleep as much and as often as you can. Listen to your body, it will tell you what you need. Keep living, but above all, be patient and know that even if you can’t see it, your body is healing every single day—on the inside and then on the outside.

Sorry, I know that’s more than one thing.


Thank you so much, Nina! What a wonderful interview!

 

Feature #26: Casey & Tammy

CaseyCasey Pratt 

Age: 39

Career: Associate Professor of English

When did you cease using topical steroids: I stopped using all steroids on May 10, 2016

What type did you use: I used Desoximetasone .25% ointment, Triamcinolone .1% cream, and Clobetasol .05% solution

What is your favorite product for comfort? Dead Sea Salts and a basic zinc-oxide cream. And Instagram #tsw

What is the hardest thing to deal with during this condition? I’ve seen a lot of people talk about how hard the “not-knowing” is, and how hard it is on families (thanks for helping Mom & Dad) —that’s all true. But for me, the hardest part was the horrendous itching and sleeplessness. It was like being possessed by a demon.

What is the first thing you will do when healed? The first thing I’ll do when I’m healed (this question makes me cry) is play in the ocean with my wife and young daughters. I missed them so much while I was laid-out. Then I’m going to have a word with my dermatologist.


Tammy Tammy

Age: 42

Career: Administrative Assistant (but had to take 5 months sick leave from work due to TSW)

When did you cease using topical steroids: September 3, 2016

What type did you use: Clobetasol

What is your favorite product for comfort? Epsom salt baths, glaxal base cream, zinc cream, tea tree spray with peppermint

What is the hardest thing to deal with during this condition? When I was at my worst, I would have to say the pain of my skin was unbearable everyday. The open cuts, swelling and the constant itch was so hard to deal with. Missing out on so many events and limited time with family and friends.

What is the first thing you will do when healed? Spend the day at the beach, and swim in the ocean

Feature #25: Iylah-Rose

Rhea and iys

Iylah-Rose

Age: 5 and a half years old

Career: Just started school this year (currently manages to attend 50% of the time, and homeschools the other half due to TSW)

When did you cease using topical steroids: March 11,  2016

What type did you use: She started on over the counter low doses in 2014 sparingly (Dermaid, Hydrocortisone Acetate 1%, mild potency), before being put onto moderate potency betnovate 1/5, cortival 0.02%. It would clear for a few days and she’d be pale white, before her skin would erupt in eczema worse than it was previously and she’d be put onto antibiotic cream (bactroban ointment) and a round of internal antibiotics (usually cefalexin) to settle what had turned into a skin infection.

This cycle continued for a few months, while she became more allergic to foods and environmental factors.

We finally got her in to see a reputable dermatologist and she was then put on further antibiotics, potent steroids- Eleuphrat (x2 daily for 4 days with 3 days break, the rebound flares in this 3 day break were horrid for her), Tacrolimus 3% (immunosuppressant protopic – we were told by the derm that this was better for her face because it didn’t have steroids in it, after which I questioned why I couldn’t just use it all over her body instead and his answer was “because it’s too expensive”, it was $50 for a 30g tub, it didn’t last long, we had no idea it was an immunosuppressant!), the next appointment her dosage was upped again, and we were told to keep up with the creams 3x a day for 7 days OR UNTIL IT CLEARED (this was after explaining how horrid the flares were when we stopped for her 3 day break as prescribed in the previous appointments).

She was already showing all the symptoms and signs of RSS, we had NEVER heard of it before, but knew she was getting more and more unwell, this was Dec 2015 and she could no longer eat anything (even her safe food of chicken and rice would cause a facial flare that was similar to that of the beginnings of an anaphylactic reaction) During this time, she had been given oral steroids 3 times in emergency (the latest being january 2016 after she ate half an orange and had painful hives for 48 hours straight).

By February 2016, she was no longer well enough to attend daycare, she was constantly covered in blood and sores, unable to sleep, needed her ventolin puffer twice daily, her IgE levels were 10 thousand times above the normal range and we decided with our GP to trial 6 months removal of steroids as all other triggers had been eliminated. When we contacted our derm and told him our decision, he ceased all contact with us.

What happened next was beyond hell. That’s when we found itsan.org and it all clicked! I remember being so happy we found the solution and thought, a few months is going to be hard but we can do this… after 6 months I remember promising her by summer she would be better, when summer came I promised her by next summer she will be better…

What is your favorite product for comfort? It has changed during the months, to start with she could not stand any water and we sponge bathed her a few times a day, she also spent the first few months in soft pj’s and resting as she had no energy. We did full GAPS with her to heal her gut, this was hard but she was so sick and so reactive she didn’t mind having soup every day (and gummies!). Then, by month 3, the only place she was comfortable was in the tub, the water had to be hot and she would stay in there for hours, sometimes up to 6 hours a day. She would watch movies in the bath, eat her lunch in the bath.. we spent a lot of time in the bathroom! This was her main comfort for months, and the only way to ease the constant crippling itch attacks and keep her body clean as her skin was raw and open with ooze, and again it was pj’s everyday, we even had day pj’s and night pj’s! She was wet wrapped all over to stop her from sticking to her pj’s, and her face was bandaged to keep the open rawness protected (even the wind would sting if she went outside)

By month 8, she was showing signs of healing and was finally seen by the specialists at the Children’s hospital, they applied for IVIG therapy for her (Intravenous Immunoglobulin) and this started in month 9 TSW, she has the infusion monthly via cannulation, and she absolutely hates the needle but when I ask her now what makes her feel better – she says her medicines from her needle. She has improved ten fold in the last 4 months, and although the hospital hasn’t agreed to her being in TSW (she is considered as severe eczema) it has been a godsend in helping her move forward, she was even able to start school this year! There was no way she was able to leave the house for more than 45 minutes a few months ago with out having a complete crippling itch attack, so it’s comforting that her immune system is on the mend.

What is the hardest thing to deal with during this condition? Not being able to play, to run, to jump, to go to school, to dance, to do sport, not being able to be normal like before steroids.

What is the first thing you will do when healed: Go to school full time! – Iylah

When we can afford to, we will be taking our family on a much deserved holiday! To the sunshine, to enjoy the water, the sand and the sun without any pain xx