At the age of 12, 1994, we got 2 cats. I was very allergic and the constant exposure caused increased asthma and frequent eczema and hives. Getting rid of the cats wasn't an option, I was too attached. (I'm slapping my past self in the face) And so began my tumultuous relationship with doctors and steroids. I relied heavily on my rescue inhaler, started trying every allergy medicine under the sun, used steroid creams that helped for short periods and then stopped working, and eventually started rounds of the "MIRACLE" drug prednisone. Ohhhh, prednisone. I would typically sleep for about 14 hours and wake up with renewed, pink, NON-inflamed skin. Of course the psychotic mood swings and rage were a small price to pay for the skin of a baby. I couldn't get enough. And they had no trouble prescribing it. Doling it out like candy. Eventually, I was a regular to the allergist, had TONS of new food allergies, and was taking a daily steroid inhaler for asthma.
In 2001 (7 years later), I moved to Texas. I found an allergist, started college, and began going through my "I WANNA BE SKINNY ALL THE TIME NO MATTER THE COST" phase and began taking diet pills. YEESH. There was a period of about 6 months were I used the pills all the time and eventually it wore my immune system into the ground. I got impetigo and pink eye in both eyes. I would put bandaids on my face and ended up allergic to the bandaids and had more hives on top of the NASTY impetigo. The doctor gave me prednisone to no avail and prescribed me antibiotics that barely worked. Eventually, I got over the impetigo and got my life back on track sans diet pills. I nearly had to drop out of school but managed to get several extensions on my finals.
Still suffering with off and on eczema that no longer responded to steroids (oral AND topical), inflamed neck and skin, and bouts of asthma, I decided to figure out eczema once and for all! In 2007 I went on a healing binge on my summer off of teaching. After a little research, I discovered I probably had Candida. I had also just gotten some blood work done and discovered I was allergic to cow's milk, gluten, and rice. With this information, I decided to change my diet and start killing the yeast with Capryllic Acid and also decided to stay away from all steroids topical and oral . With the lack of calories from not knowing what to eat and the high dosage of Capryllic, I had a TERRIBLE die off overload (Herxheimer Reaction). I hallucinated, had racy heart episodes, HORRIBLE anxiety, CRAZY thoughts, and an overall feeling of being out of my body (to name a few). It was so intense and scary. I also developed a weepy, golden crusted rash all over 90% of my body. I figured it was the die off. I needed a cleansing diet, so I went on The PH Miracle Diet and cut out Capryllic all together. Once on the diet, my energy soared and my skin SLOOOOOWLY started to heal. I felt better than I had in years. I started the healing at the end of May, and by the end of August, when school started, I was mostly but not completely healed. (I have NO pictures of this withdrawal. It was as golden crusty as it could get and was HORRIBLE and I was too depressed to take pictures.)
I was strict on my diet and wasn't eating anything I was allergic to, but still had intermittent inflammation over the course of the next year. I searched high and low to figure out what was causing the inflammation?! Was it the cleaners the school used?? Was it pollen?? Was I allergic to (I now realize these were withdrawal flares...If I'd only known) By my wedding in August of 2008, my skin was great. I immediately got pregnant after our wedding and ate EVERYTHING I was allergic to just to try to keep ANYTHING down from so much vomiting. It resulted in full body eczema and with that I picked up steroids again. (NOOOOOOOOOOOOO!)
For the last 4.5 years I have used Bethamethasone 0.05% ointment regularly and in the last 1.5 years I have used it nearly 1-2Xweek on my face, chin, neck, chest, shoulders, arms, back, and stomach. Always searching for the cause of the reaction and having no idea it was the one thing that "fixed" it.
About 2 years ago, I developed a host of crazy and bizarre symptoms with NO rhyme or reason; crazy blood sugar fluctuations, hyperthyroid symptoms, anxiety, palpitations... They were maddening and I tried EVERYTHING to fix it. At the end of February 2014, I went to the mall with my sister and had a crazy weird episode. She asked me, "You live with this every day? I don't know how you do it..." It was at that point I decided enough was enough. I drove to whole foods and got a protein powder supplement and began only eating organic, whole, foods. The protein powder seemed to provide some relief of symptoms. Then, after a week, I had what I thought was a crazy "allergic reaction" that resulted in a red spot on my chin and neck. Over the next week, the rash spread and spread and spread and was soon so hot and inflamed and prickly that I felt like I was going crazy. I had night sweats, muscle and bone aches, crazy dreams, shakes, chills... I truly thought i was losing my mind and cried for an entire day. And then... I found Juliana. And ITSAN. And Josh. And Libby and Jake. And Dr. Rappaport...Sweet, angel Dr. R. They were JUST. LIKE. ME. I was NOT alone. I had a name for what I was going through! THE ECZEMA FINALLY MADE SENSE!!! I was in Topical Steroid Withdrawal. The long and short of it? I was in for a hellish ride... but I knew there was an end in site.
Since ceasing steroids, my blood sugar and thyroid symptoms have gone away completely. I couldn't go more than 2 hours without a full meal and can now go 4 before really "needing' food. The weird symptoms have gone away, and now the flares begin.......
I started my withdrawal on March 1, 2014 and have taken photos daily as well as kept a well documented journal. I will share all of this in future posts.
#TopicalSteroidWithdrawal #TSW #Diagnosis #History #RedSkinSyndrome #RSS #TopicalSteroidAddiction #TSA