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!

NYC Mount Sinai Integrative Medicine Conference

New York City is one of my favorite places, so when I was informed by Henry Erlich that this conference was being held in the Big Apple, there was no hesitation in buying a plane ticket.

The conference was this past weekend, May 13th-14th. I was only able to attend the primary day. However there was plenty of information to be absorbed. My main reason for going was to hear the prestigious and awe-inspiring Dr. Xiu-Min Li spill her knowledge on allergic disease, ASHMI, and her take on Red Skin Syndrome. She will be one of the doctors I humbly get to interview for the documentary this summer, and I am stoked! Such an amazing woman whose research I know will change the way we treat eczema in the next decade. I see a Nobel Prize in her future.

Dr. Li has a phenomenal opportunity while working at Mount Sinai, bringing together both Western and Eastern medicine in a clinical setting. No Western doctor will be able to deny her results and her rigorous efforts to show how wonderful Traditional Chinese Medicine can be (and is!) for our growing allergy and eczema problems.

Besides Dr. Li, there were a plethora of doctors participating, some even flying all the way from China. We had headphones and a translator present in order to understand everyone speaking.

At the bottom, I will be posting a video of Dr. Li’s talk and all that I was able to film. Sadly, I was told we couldn’t video anything so I wasn’t prepared. It was only very late the night before that I was told I was misinformed. I did my best filming with my heavy camera and old phone while trying to listen. It’s a bit shaky, so I apologize. It had been down pouring that day, which soaked my shoes, so most of the conference I was bare foot, attempting to sit on my feet in hopes of warming them up in that already frigid auditorium room.

But here are a few highlights from the conference:

1st Speaker: Susan Weissman

Her son, Eden, had horrific allergies, asthma, and skin problems. She found Western medicine was not helping their son improve. She is an avid promoter of Dr. Li’s work and is happy to say her son is finally able to enjoy life because of her protocol. She is the author of Feeding Eden, a memoir about raising Eden with all of his serious health problems. I think the most profound thing she mentioned was her question to Western medicine doctors: “How do we treat the entity of allergic disease?” Medicine seems to be extremely narrow-minded instead of looking at the body (or a condition) as a whole.

2nd Speaker: Dr. Xiu-Min Li

She gave a brief oration before her longer one at the end of the conference. The merit of her work is astounding and she emphasized how necessary it was to be able to show how TCM brings results that Western doctors can believe in and not have them be able to dispute them as “false” or “not supported.” All of her work has to be proven through science.

4th Speaker: Shi-Ming Jin, MS

*Apologies since I skip over a few speakers*  I loved how she spoke about how the integrative world is striving to be more innovative and adaptive to Western world medicine in hopes of showing how TCM is helpful and important in giving patients relief.

8th Speaker: Jing Li, PhD, FDA Botanical Review Team

Basically, there are FDA guidelines/guidance for using botanicals (herbs) in medicine. They are tested in clinical trials just the same as Western medicine, so they are treated equally. It can not be written off. A demonstration of quality control was given, and how they wish to minimize any chemical, biological and pharmacological variations to obtain consistent drug substances.

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10th Speaker: Ke Xing Sun

He gave a speech about how using TCM is about keeping harmony in health with our whole body working together as a unit. We are individual people with individual needs, something Western medicine does not always provide. We should be more patient-centered with medicine. He also advocated health in daily life, reiterating how prevention is key.

11th Speaker: Arya Neilson, PhD

*She was a stellar speaker* She deals with acupuncture and the benefits it can give to certain patients, even those with eczema. One of the most interesting things was how this type of treatment post-surgery can help with opiod sparing since we, in the US, take up the vast percentage of opiod use around the globe. Opiod abuse it sky high and having this available is quite a remarkable treatment. Acupuncture is now even included by Western doctors in some therapies! When it comes to allergies and eczema, there was a study done to show how dust mite IgE levels were down regulated after using acupuncture, and how itching was reduced in eczema patients. However, acupuncture is more of a rescue therapy for patients and herbs should come first in eczema treatment. (She is featured on the video)

12th Speaker: Scott Sicherer, MD

He spoke eloquently about his field in allergy/immunology in babies and what could be causing such an exponential climb in allergies these past few decades. No one is for certain, but he feels having exposure to the skin could be a factor. For some reason, there has been found to be peanut dust inside of homes, which is where skin contact could become an issue. If babies have eczema, they are at a higher risk for allergies. He would use oral immunotherapy to try and desensitize the allergy, hoping to eradicate or raise the threshold. Scott touched upon using biologics (omalizumab) for some cases for 20-22 weeks (it’s an anti-IgE), but he says it doesn’t mean it’s going to be any more effective (just perhaps speeds the process).

14th Speaker: Rachel Miller, MD

Rachel continued to speak on allergies and issues in infants and children, focusing a bit on pregnant woman. She showcased how if a pregnant woman is under stress, her child is more likely to have wheezing. She also explained how methylation and DNA does play a role in some of these areas and how Dr. Xui-Min Li’s protocol, ASHMI, has shown good results in pregnant mothers.

16th Speaker: Anna Nowak-Wegryzn, MD

She gave a very in-depth speech about allergies and infant treatment. When she mentioned starting oral tolerance as early as 1 year old, a question popped into my mind. If we can detect and start to treat allergies at that age, why is it that Western doctors are so quick to lather steroids on a baby, but claim they can not test for allergies until about 3 years old? That’s something that I feel should be addressed. When it comes to peanut allergies, she said she personally thinks using boiled peanuts instead of baked are safer to use for desensitization without losing efficacy.

** Funny side note** Dr. Xiu-Min Li came up and asked a question during Q&A. She asked it in Chinese, and the speaker answered back in Chinese. Everyone asked what was said so Dr. Li offered to translate. She started to do the translation, but didn’t realize she was still speaking in Chinese, so someone stopped her. She didn’t realize she wasn’t speaking English. We all had a laugh.

18th Speaker: Julie Wang, MD

 She spoke about a drug trial (See pics below)

20th Speaker: Dr. Kamal Srivastava, PhD

One of his best and to the point notes was that IgE is central to the pathology of allergic disease. Another subject he touched on was FAHF-2, which is another herbal formula much like Dr. Li’s ASHMI. Berberine, an herb, is the most potent at reducing IgE levels, and can even help lower glucose. However, it is very badly absorbed taken orally, so they are trying to make it more effective (perhaps, adding to a molecule).

22nd Speaker: Dr. Ying Song, MD

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23rd Speaker: Anne Maitland, MD, PhD

She studies Mast Cell Activation Disorders. Anne used the Great Wall of China as an analogy, how it’s not always effective for keeping the bad out. Mast cells can release different things, like histamine or tryptase, and just like a police call, you want to send the correct team out to help for the correct situation. She also touches on how when we figured out how to decrease certain bacterial-based diseases (like Measles), hypersensitivity disorders increased (like allergies). Naps, apparently, are something we need more of to help with stress (which I totally agree!).

24th Speaker: Julia Wisniewski, MD

She spoke about our skin barrier and how we shouldn’t use alkaline soap on baby skin. The best thing she mentioned however was that at the latest AAD meeting, she saw a slide that said steroids do, in fact, have the ability to cause allergic reactions in patients. Near the end, she spoke about Vit D and how it’s definitely important for our bodies.

The last two speakers were Tiffany Camp Watson, the mother who gave her testament about using Dr. Li’s protocol, and then Dr. Xiu-Min Li herself! They are both on the YouTube video speaking. Most of the video is of Dr. Li speaking. After 6:30 mins, it is all Dr. Li and her presentation.


I hope this was informative and I can’t wait to have all my equipment in to shoot these upcoming interviews! 2.5 weeks to go!

Feature #32: Kirk

KIRKKirk Robertson

Age: 19

Career: Self employed Personal Trainer (currently on hiatus)

When did you cease using topical steroids: 29th of December 2016

What type did you use: Eumovate

What is your favorite product for comfort? Dead sea salts

What is the hardest thing to deal with during this condition? Not being able to build my business or build on my plan of becoming a professional natural bodybuilder

What is the first thing you will do when healed? Train with my girlfriend and go out for a meal with my family.  Followed by an overdue night out!

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.

 

Feature #28: Kayla & Kleidy

Kayla.pngKayla Clarke 

Age: 26

Career: 3rd year resident of Naturopathic Medicine

When did you cease using topical steroids: Dec 19 2016

What type did you use: Betamethasone valerate 0.1% on and off for 18ish years

What is your favorite product for comfort? A big fuzzy blanket, a hot cup of tea, and cannabis salve

What is the hardest thing to deal with during this condition? Acceptance. For a long time I couldn’t accept what was happening to me. I thought (being in Naturopathic medicine), I would be able to find a quick fix. Not the case. I can support my body where it needs help, but in the end, I have to let it do its thing.

What is the first thing you will do when healed? Hike up a mountain and get all kinds of sweaty.


Kleidy Sevillakleidy sevilla

Age: 10

Career: Grade 4 student

When did you cease using topical steroids: June 2016

What type did you use: Prednisone, elidel, hydrocortisone in different strengths

What is your favorite product for comfort? Only product I can handle is vaseline, love icecream to keep me cold because I’m hot all the time. Also love to hear music to calm me down.

What is the hardest thing to deal with during this condition? Not being able to have a good night sleep. I’m always tired.

What is the first thing you will do when healed? I am going to wear a bathing suit and go to the swimming pool.

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 #27: Donna & Whitnee

Donna MDonna Marinkovich

Age: 42

Career: Mum and recently back to my old life (especially since skin is so much better) but part time, art dept for film/tv in NZ

When did you cease using topical steroids: December 15th 2015, as soon as I had read the ITSAN site.

What type did you use: I wish I’d paid more attention but mixed in there was hydrocortisone, elidel, elocon sporadically on and more so off for over 30 odd years.

What is your favorite product for comfort? Ice packs particularly at night for the itch. I didn’t use any products during the early months (1-6) as did moisturizer withdrawal, but since my skin took a turn for the better I have been using Avene products, namely the spring water spray and Xera calm moisturizer.

What is the hardest thing to deal with during this condition? Physically – the insane itch can drive you pretty crazy, the trance of the itch-scratch cycle is all consuming. The skin flaking. Just the general pain, discomfort and constant awareness of how your skin feels so foreign and sore and alien. Mentally – not knowing what’s really going on, the doubt about whether you’ll ever get better (you do though!) As the healing is not linear, eventually one day you may have calm skin, but the next it feels like you have regressed again with no rhyme or reason, so you have to dig deep to accept and just surrender to all this on some level. I am still trying to practice this 15 months in. Trust is a big one, that your body knows what it needs to do to heal. I am humbled by those whose journeys with this are really tough.

What is the first thing you will do when healed? I couldn’t wait to hold my baby against my bare skin and not have it make me uncomfortable or anxious or itchy. The healing was so slow to unfold, but I felt elated when I saw glimmers of my ‘old skin’ again, and so grateful for my body and what its been through. It was awesome to not feel super self conscious of going out in public and showing my face. To feel the anxiety ease off a bit. And every time I settle from a flare, even though it’s only for a day or so, I am still grateful my body can get there and hopefully will one day stay there.


Whitnee SpringfieldWHITNEE

Age: 25

Career: Creative Designer – had to leave work due to TSW

When did you cease using topical steroids: 01.20.2017

What type did you use: Hydrocortisone, escalating to daily use of Betamethasone and Elecon. Also had 3 month course of oral steroids and Tacrolimus

What is your favorite product for comfort? Avene Cicalfate Restorative Skin Cream has significantly improved my face and neck which were super tight, dry and flakey with slight oozing

What is the hardest thing to deal with during this condition? Due to debilitation I have had to move across the country to live with my mum to care for me. This means I don’t see my fiancé often and we have had to postpone our wedding. I miss him terribly.

What is the first thing you will do when healed? Marry the love of my life and return to my passion as a live performer (singer songwriter).