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?
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!