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

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 #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!

They Struggle, Too

In September of this year, I had the privilege to accompany ITSAN (the International Topical Steroid Addiction Network) to the CSD/AAD conference in Washington, D.C. as a patient advocate. CSD stands for “Coalition of Skin Diseases” and AAD stands for “American Academy of Dermatology.” There were many dermatologists present, as well as non-profit groups with their patient advocates.

Before flying into D.C., I already had anxiety knowing that many dermatologists weren’t going to 1) know about Red Skin Syndrome or 2) were going to brush me us off as not real.

On the first day, we mostly met with the non-profit groups. However, the second day was geared mainly towards dermatologists. For awhile I was feeling oddly used. I knew that when we had to go speak on Capital Hill, they’d want me to share my story to get what they wanted, not because it would help me in any way about Red Skin Syndrome. So, I had mixed emotions all day long.

What didn’t help was that at the end of all the meetings Day 2, we ran into an older doctor who told us he didn’t like prescribing steroids very much. Intrigued, we sat down with him. We then entered into an hour long conversation about how his method is to dowse his patients in steroids 6x a day to get rid of the eczema. I think I stopped taking him seriously when 1) he looked at me (and I look WAY better than I have been) and told me “I’d consider you severe atopic” and 2) then went to get up and touch my face without my permission. I told him very bluntly he was not touching my face. If someone starts a sentence off with “I know this may sound conceited, because it is…”, how am I supposed to find you educated? Our conversation was getting nowhere with him and it was very disheartening.

On that same day I had met with everyone from Florida and we exchanged names and how we should go about getting business done on Capital Hill. There were two other advocates amongst all the dermatologists. One was for vitiligo, and one was for alopecia. Both of these conditions are known in the dermatology profession. When my turn came, I felt a bit of  the ‘deer in the headlights’ come on when I tried describing Red Skin Syndrome. One doctor in particular stared at me and asked,

“How old are you?”
“I’m 27.”
“Oh.”
“Why how old do you think I am?”
“I thought you were a teenager.”

Others nodded in agreement that they thought I was much younger. I felt defeated in a sense since I wasting viewed as this young, meek advocate, not the educated adult that I am.

Well, the next day, I rode into Capital Hill feeling slightly inadequate. All the legislation that we had been learning about didn’t directly affect or help my fight for awareness, but I tried to find a way for my voice, in my conscience, to matter.

At one point, I was alone with two other dermatologists. One was from the Orlando area, one was from the Melbourne area. The one from Melbourne also had his wife and son with him. While waiting to meet with our representative (Mica), we spoke to his assistant about our wants and needs. When I waited to share my story, I was able to listen to these dermatologists speak about their troubles and business woes due to how the system is run. I suddenly felt a twang of empathy for them. I believe that doctors should be regulated, but it seems the system in place is making it very difficult for them to practice good medicine. They are run down, unable to give their patients adequate attention. They are fighting with insurance companies, being forced to stay later and later at the office to finish menial paperwork, searching for affordable medications for their patients since prices have skyrocketed, and now are faced with their compounding rights being highly regulated. These are things, as a patient, I have never thought about.

So, when it came for me to speak, I felt much better speaking out for the entire group’s plight, not just my own. It helped me realize that patients are not the only ones struggling. Yes, there are plenty of doctors who still give patients a hard time about Red Skin Syndrome and need to be better educated on steroid use, but there are also doctors who are probably just so exhausted that they are going to be defensive.

The way the system is being run now is for money. Representative Mica even bluntly opened up about one of our legislative asks. There is a call for more research money, of which he whole heartedly agrees. However, when I explained our condition he said it was sad that I would most likely not see any research being funded for my condition since it doesn’t generate a profit. This may not be verbatim, but he said, “Generally they will put money into research if they know they’ll see a profitable return, but with you, they wouldn’t be getting that.”

Even HE sees the uphill battle we face. It’s unfair to push us aside because we don’t fit into their pockets.

So that is why I heavily push and advocate for PREVENTION. If the medical community was aware of the correct way to utilize topical steroids, and what the consequences are if they overprescribe them, then we have a fighting chance to keep patients away from this turmoil. And not only does the medical community need to be educated, but so does the public. Too many times we are given a medication and not taught what it is, how to use it, why we are using it, and what the side effects may be when used.

So doctors, please understand that we are just fighting for our health since the system doesn’t seem to be. And patients, please understand that doctors are fighting for their sanity since the system doesn’t seem to be.

The struggle is real. #WeNeedReform

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!

How is this Legitimate?

This is the abstract from a review done in Australia on the effects of TCS in children.

Screen Shot 2016-09-03 at 3.37.33 PM

“… and their unfounded concerns…” Ya, you read that right. I’m quite concerned as to what they deem unfounded?

“Contrary to popular perceptions, (TCS) use in pediatric eczema does not cause atrophy, hypopigmentation, hypertrichosis, osteoporosis, purpura or telangiectasia when used appropriately as per guidelines.”

Screen Shot 2016-09-03 at 4.06.43 PM

Link for above article

It is well known that using topical steroids on children should be used with extreme caution, and if parents have questions or concerns, they didn’t just suddenly make them up in their head. No, they have undoubtedly heard things (that are likely founded) and have every right to be concerned. Often times, children even outgrow eczema. If their case is mild, there is no reason to start lathering them in topical steroids (in my personal opinion). Babies get rashes and skin blemishes. If they aren’t bothering the child or aren’t severe, perhaps finding a more natural way to deal with their skin would be best before jumping onto steroids.

A problem I also have with the “use appropriately as per guidelines” sentence is that doctors often stray from the said guidelines. If the product says to only use the drug a certain way and the doctor’s discretion is different, then there is a huge problem. No amount of “don’t worry” or “it’s totally safe” will in actuality make it safe for you to go past the 2 to 4 week rule in children. And, the larger the surface area you are told to put the steroid, the higher the potential of adverse effects (you know, those “unfounded” ones).

To further my proof, you can read the FDA Evaluation and Research paper.

Founded by three different references, it states, “… HPA axis suppression has been observed in infants and children with both high potency and low potency topical corticosteroids.” Why on earth would you put a child at an even higher risk with potent steroids when they should only be placed on the least potent steroid first, of which they could still risk having side effects if used over the guideline mark? For example, this evaluation states Fluticasone (Class 5 steroid), is said to be approved for patients 3 months old and up for a maximum of 4 weeks. Other studies show an even shorter period of 2 weeks should be utilized. The potent and super potent steroids are Class 1 and 2.

The best part of this research paper: “… the labeling of each product should advise practitioners of the appropriate duration of use of the product. The labeling should give information regarding how quickly improvement in dermatoses should occur after therapy with topical corticosteroid is started, and practitioners should be advised to discontinue the product if improvement does not occur within this time frame.”

It doesn’t say if the steroid isn’t working, immediately up their potency. It says DISCONTINUE. They need to be reassessed.This is what is supposed to happen.