Day 98 – “topical steroids are your best friend”

In late-October (month 2 of TSW), I asked my GP to refer me to a different derm because the last one I’ve been seeing over the last 3 years would only prescribe potent steroids and Prednisone. This derm was the one who recommended I take Prednisone during my 2010 and 2012 flareups. (FYI, I’ve never taken oral steroids.) I knew going back to this guy was a no brainer because appointments with him usually last 5 minutes or less and his ultimate fix-it was Prednisone, Prednisone and more Prednisone.

I went to see derm #2 this week. Let’s just say it was a waste of time. There were 2 things I wanted to accomplish. 1) To see if she will recognize TSW/RSS and 2) to get a referral to see an opthamologist and to get a body check as well as blood work done. (I don’t know if it is like this for other countries but all of this is apparently covered by medical care in Canada.)

Please see below for an excerpt of our convo. I don’t know whether or not I should be angry or laughing at the absurdity of our appointment.

I showed derm #2 the pictures of my face during the first 2 weeks of TSW (will not post this since it is pretty friggin’ gruesome) as well as the picture in my day 71 post.
Derm: Wow. It was pretty bad huh? Your face was infected. Did you go to your GP for some antibiotics?
Me: I went to the ER and the only thing they would give me was Prednisone.
Derm: Prednisone is not a very helpful drug. You’re all good when you’re on it but once you finish your course, everything comes back.
Me: I know that. That is why I opted not to take the Pred. and completely withdraw from topical steroids.
Derm: What? You’re not currently using steroids? Did you experience r a rebound?
Me: Yes I did. That is why I’m here to see you. I’m currently going through TSW.
**At this point, I whip out the 2 research articles by Dr. Rapaport and hand them to her.
Derm: (Skims the front page and starts shaking her head) This is NOT you. What happened was an infection and worsening eczema because you stopped topical steroids.
Me: I’m certain this is me. I displayed all of those symptoms (spreading eczema, clobetasol, desnonide no longer working on my FACE, red oozing rashes)
Derm: I’m certain this is not you. What you need to do is to get back on topical steroids. Then everything will be better and the light brown scars/pigmentation will be gone as well.
Me: I don’t want any topical steroids. I firmly believe steroids are the root of the cause. I stayed away from it and things got better.

And now for the scary part. Wait for it…

Derm: Don’t be afraid. You’re shouldn’t be afraid. Topical steroids are your best friend. You need them. You will benefit from them.

****This is the part where I go, WTF? She said it in a very soothing, doctor-esque tone of voice. One that sounded almost hypnotizing. If I didn’t know any better, I would’ve totally fallen for it.

She proceeded to write prescriptions for cortisone 0.1% (mild) and betamethasone (medium potency).
Derm also asks me to show her my battle scars and I showed her my arms, neck/chest area and upper back.

Derm: Btw, I want to say that I’m very impressed at how much you have healed since September. That is very stoic of you to endure so much pain and suffering.
Me: This is only because I stopped using steroids. My body is rebuilding from the damage caused by steroids.
Derm: What are those marks on your back. What other treatments have you pursued?
Me: Acupuncture. It has helped me a whole lot.
*I realized this is exactly what you should NOT say to Western doctors. She had that ‘what-kind-of-nonsense-are-you-talking-about’ face. The acu-WHAT? That shit is witchcraft face.
Derm: I don’t believe acupuncture can help with eczema. Eczema is incurable. You have to learn to accept that. Topical steroids will help to alleviate the symptoms.
*Brainwash, much?

At this point, I figure there is no point in arguing. Time to move on to objective #2.
Me: Can I get a referral to see an ophthalmologist? My eyes were often blurry and I had trouble seeing out of one eye during the first 2-3 weeks of the ‘infection’. I have hereditary kidney disease. I don’t know if any of this has impacted my health but I would also like to get blood tests and a full body scan.
Derm: You’re right. When your face goes through an infection, it normally attacks your eyes and makes it extremely dry and uncomfortable. (My eyes were often yellow and dry). I will give you referrals to see an ophthalmologist and also arrange for you to get blood tests and a body checkup.

*So no doctor ever took the time to explain the painful side effects of withdrawing from steroid use. Bottom line: Topical steroids are drugs. You will pay the price when you decide to stop using it. Ah, pharmaceutical companies and Western medicine… Thanks for all the trouble!

Note: She also talked about cyclo, Protopic and light therapy. I opted to get a referral to get light therapy but that will be 1-2 months down the road since there is a wait list. I also feel like I should wait a bit first. IMO, too early for light therapy since it has only been 3-ish months.

You win some and lose some.

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11 thoughts on “Day 98 – “topical steroids are your best friend”

  1. Hi Kay,
    Omg this has to be one of the funniest entries I’ve read! ‘Topical steroid is your best friend’? Wtf???
    I am so glad I am not lonely in this journey. I’m only a week in but am totally on your side. Gotta love western medicine and their theories hey? What a load of croc.
    Linda

    1. I know right? I was literally like, WTF!?

      Good luck with your journey, Linda. I know you’re a week in and I want to let you know that it will only get harder. Don’t give up. Surround yourself with people that will support you and try not to stress over things. You’ll be fine. Give it time and just remember that things can always be worse. =]

  2. Wow, I can’t believe how brainwashed your dermatologist is. It’s frightening. I can’t wait until topical steroid addiction is recognized by the medical community in the future. Hopefully this doctor is still around so she realizes just how brainwashed she is.

    1. I know right? I shocked at how she refused to acknowledge this even when I had published articles about TSW. To be totally honest, I’ve lost faith in dermatology and western medicine as a whole.
      Btw, I’m gonna check out your blog this weekend!

  3. As I read this, I just couldn’t help but think, “what a dumb ass”. Why are you itsan freaks so brain-washed that you think you know more than the docs? Your derm was 100% spot on with everything said but your own prejudice would not allow you to listen. Millions and millions of people end all their suffering with topical steroids and when prescribed right, there are zero, zilch, nada, no side-effects. If you’re seeing those, you’re not on the right prescription. It’s that easy.
    TSW people are the only ones I can think of who deserve the suffering they endure because they believe one dumb broad who started a website and a doctor than 99% of all other doctors think is a quack.
    When oh when will you open your eyes and see? Never I suppose.. and that’s just sad.

    1. Hi Wendy,
      I think those are unfair statements. There are no absolutes in this world. Not many doctors are perfect and give prescriptions with their best educated judgement. You seem to know “millions and millions” of people and that there are “zero, zilch, no side effects” of corticosteroids.

      There are numerous TSW patients who have withdrawn for years and have recovered, like myself. Steroids have their place – absolutely though in some cases; they can be wonderful and lifesaving in dire situations. But drugs are drugs, and it is possible for the body to grow dependent on them. This is the case for some people; a bulky percentage of people are prone to dependency, and few are lucky to have a genetic disposition that allows them to be more resilient.

      Those who question “the system” are not crazy. I think the quote, “Insanity is doing the same thing over and over again and expecting a different result” is something TSW’ers can relate to. They are people who have seen their trusted doctors again and again, taken their prescriptions again and again, but without improvement. In most of our cases, they worsened; and of course, worsened further after withdrawal from necessity to live a greater quality of life. Anyway, don’t knock it ti you think about it.

      1. Hi Leizel,

        Thanks for taking the time to respond. Glad to know you’re still around and kicking butt! I wrote a response to “Wendy” last night and totally share your sentiments. Hope you’re well!! = )

    2. What a slug. “She” put ITSAN as “her” webpage. Here’s the deal, I’ve done a lot of research and have 20 years of personal experience with steroids. I’ve been through withdrawal once already (unknowingly) and when I quit this time my skin looked “perfect”. For the last 5 years I’ve managed to head off the flares at the pass with a class 1 steroid. However, I started developing a host of debilitating endocrine issues. ALL of my doctors told me I suffered from generalized anxiety. ALL of my doctors told me IT WAS IN MY HEAD and prescribed me antidepressants and anti anxiety meds (which I refused to take). After going on s cleanse and stopping topical steroids inadvertently, I started a HELLISH withdrawal; BUUUT ALL OF MY PLAGUING SYMPTOMS were gone!!!! The steroids were making my skin look fine, but were wreaking havoc on the rest of my body. In this case; I knew better than 5 doctors I saw. It was NOT in my head. The severe blood sugar fluctuations were REAL and STOPPED upon cessation of steroids. The hyperthyroid symptoms STOPPED upon sensation of the steroids. The confusion STOPPED. I could go on. I’ve looked into some other alternatives of applications of steroids and have found withdrawal necessary for all of them. I am not criticizing those people for their decision. I was steroid reliant for 20 years. I GET it. However, I don’t understand how someone could be so cruel, callous, and condescending to someone for choosing this route. OBVIOUSLY this isn’t easy! And sticking with it is a daily struggle. But OBVIOUSLY we believe it. What a coward.

      1. Thanks for leaving a comment and sharing your story. It is always interesting to hear about the other issues related to using topical steroids.
        LOL. I also saw her website link to ITSAN. She sounds like a troll. HAHA!

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