“I don’t think anyone who hasn’t gone through something similar will understand the desperation that comes with trying to find something to ‘manage’ your ‘Eczema.’ Even after knowing that Protopic gave me liver spots when I used it in my teens, and the awful burning sensation I felt when I came into contact with water, I STILL used it again because I was desperate not to use steroids and felt like I didn’t have a choice.

I felt completely trapped by all this medication and stuck in a vicious cycle. People will end up using Protopic, which they know is bad for them, because we have all been put in a position that no one should ever have to be in, and so we reach for (what we think is) the lesser of other evils because we have been let down as a result of not being made aware of the dangers of medication we used for our skin.”

-Cara Ward, excerpt from “Let’s Talk About: Protopic (Tacrolimus)”

In “Let’s Talk About” Protopic (Tacrolimus)” writer and TSW survivor Cara Ward shares the Protopic experiences of 32 adults. She highlights concerns and health outcomes following Protopic use and how these experiences may have impacted Topical Steroid Withdrawal recoveries. Michelle Li, ITSAN Executive Board member is among those featured and shares her personal experience using Protopic.

Please note: ITSAN does not diagnose or recommend treatment or medication. Individuals going through TSWS (Topical Steroid Withdrawal Syndrome), should discuss treatment options with their doctor. Every medication brings the risk of side effects. All issues pertaining to the care of patients with TSW Syndrome should be discussed with a physician experienced in the treatment of TSW Syndrome. ITSAN maintains a list of member recommended TSWS supportive doctors available under Files in ITSAN’s Facebook group: Topical Steroid Withdrawal Syndrome Support Group – Private Group.

Excerpt from “Let’s Talk About: Protopic (Tacrolimus)”

By Cara Ward

Michelle Li

1. Brief overview of your steroid/immunosuppressant use.

  • Childhood use of topical steroids like Elocon.
  • 1-2 years of Protopic use at age 17.
  • 8 months of topical steroid use unknowingly (disguised as herbal cream).

2. When did you use Protopic?
When I was 17 (I’m 30).

3. How much Protopic did you use?
1-2 tubes.

4. Did you use Protopic during TSW?

5. Did you use Protopic just before going into TSW?

6. Do you believe that Protopic has affected your withdrawal, and if so, how do you believe it has?
Yes, my TSW was the worst on my face which was the only area I applied Protopic. I had raw patches that oozed and they were hard to heal.

7. If you could go back, would you use Protopic?
Absolutely not.

8. Thoughts on Protopic and your experience of using it.
It’s marketed by doctors as a steroid alternative. They assure you it’s safe to use long-term but ultimately, the withdrawal is similar. Why does it burn when applied on the skin? Are the side effects worth the red rash?

Read “Let’s Talk About: Protopic (Tacrolimus)”

By Cara Ward