Saturday, April 12, 2014

My 20 Year History With Topical Steroids and Diagnosing Topical Steroid Withdrawal

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


10 comments:

  1. Hi Jen, I also used betamethasone ointment, one of the most potent ts there is. You are in for a brutal journey but I want you to know I'm always available for support, information, whatever you might need to get through it. You will get through it as you probably know from others who have done tsw.

    The best thing I ever did in my own tsw was to stop moisturizing and do dss baths. It made a tremendous difference in all symptoms. Most who did tsw and moisturized had very long recovery periods as in 3+ years. Most who do tsw via no moisturizers recovery in less than a year and a half. But far more importantly, there is a major difference in how one is able to function during tsw depending on whether one moisturizes or not. I hope you choose the best way and don't get influenced by the well meaning people who promote moisturizing for comfort. It is a myth and exactly the opposite. Not moisturizing during tsw is the most comfortable way. The truth is moisturizing during tsw will make your life a living hell, and not moisturizing during tsw will enable you to be able to function mostly normally. It will still be difficult for the first few months but not near as difficult if you moisturize. Most vets moisturized during their recoveries and don't realize this fact because they didn't experience it. I wish you the best.

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    1. Hey Dan, I would love some more info on MW. Did you shower daily? How long after MW did you start to feel somewhat normal? I live in Denver (very dry climate) and am worried the elements will rob my skin of it's natural moisture. I have used only coconut oil until yesterday I used a body lotion and had horrible results w/ it. I am in day 57 of TSW and have really hit a downside. I am looking for any advice/comments out there. Thank you for any input--Dan

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    2. Hi Shrimpr, please check out my blog. You will find the info you are looking for there. Feel free to ask me any questions you might have there as well. Dan

      http://topicalsteroidsurvivor.blogspot.com/

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    3. Shrimpr. I ok 57, too, and on a landslide! Do you have a blog?

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  3. Hi Jen,

    You're very welcome. I know how it feels. May I ask, how did you arrive at the conclusion to stop moisturizing? How long ago did you stop? Thanks, Dan

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  4. Out of disgust.. Haha. The ooze is too much for me to take. Dead dry and crusty is MUCH better to me than oozing. Also, I wanted my body to start creating it's own moisture. That and when my skin has moisturizer on it, the flakey skin gets soft and sloughs off, leaving my new, raw, undeveloped skin exposed. Which feels horrible.

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    1. Interesting. Most people end up moisturizing because of conventional wisdom and the false assumption it is necessary and brings comfort. Dead Sea salt baths did wonders for my skin, and also helped heal the spots where I applied very little ts on my face, ears, and other areas quite quickly. I have a lot of info on this and other effective methods to mange tsw symptoms on my blog in case you haven't seen or read it.

      http://topicalsteroidsurvivor.blogspot.com/

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  5. Jen, I'm glad your started a blog! I think we're very similar, I had my "must be skinny at all costs phase" too! Lol. Have you had any issues with your adrenals that you know of? Also, how's your skin feeling now with the moisturizer withdrawal?

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  6. I was cringing reading this post. Yikes. As I typed up my history I was cringing too. Oh how stupid we have been! I hope your journey isn't too rough. I know that given my history, I am doing really really well and I believe MW was part of the reason. I hope you do even better than I do!

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