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It can be helpful to hear from others going through the same struggle or journey as you. My guest today shares her powerful story of determination and never giving up on finding the root cause for her rashes which started in childhood.
Today's guest is Dominika O'Sullivan, a former city girl thriving in the beautiful West of Ireland and transitioning to countryside living. She is a lifelong eczema warrior and Protopic withdrawal sufferer who was failed by several medical, skin and alternative medicine professionals and is currently discovering and addressing her root causes of the original condition while happily witnessing symptoms reduction and disappearance. Professionally, Dominika is a Human Resources and employment law consultant working with businesses and assisting employers in identifying simple solutions to complex people challenges.
For those who are not familiar with Protopic — it's a non-steroidal immunosuppressant drug also called Tacrolimus.
Whether it's Protopic Withdrawal or suffering from other rashes, what has helped you on your journey? Let me know in the comments what was a turning point for you!
Or, listen on your favorite app: iTunes (Apple Podcasts) | Spotify | Stitcher | TuneIn | Subscribe on Android
In this episode:
- Dominika's journey of childhood to adulthood eczema + Protopic Withdrawal
- The many treatments she tried (both natural + conventional)
- What was the turning point for her?
- Where Dominika applied Protopic
- What has changed since working with Jen's practice
- Dominika's advice to others struggling with Protopic Withdrawal
Quotes
“Throughout my childhood, I just remember the stories of having to wear gloves like many kids with eczema and atopic dermatitis would have to, because I was scratching so bad that my hands would be covered in blood in the morning.” [01:17]
“I was probably at the verge of a nervous breakdown because I kept my full-time job, which is relatively stressful and it requires high focus of attention. But I couldn't sleep and I was experiencing all those debilitating symptoms.” [7:05]
Links
Follow Dominika on Instagram here (Please note she can pick up messages but doesn't post.)
TSW Podcast with Jennifer Fugo, MS, CNS interview mentioned by Dominika
Book an assessment session with Jen's clinical practice here
272: Protopic Withdrawal: A Personal Story w/ Dominika O'Sullivan FULL TRANSCRIPT
Jennifer Fugo: Hi, Dominika, thank you so much for being here. I really appreciate you coming on the show to share your personal journey.
Dominika O'Sullivan: Thank you so much, Jennifer. It's an absolute pleasure to be here and I look forward to having this chat.
Jennifer: Would you mind sharing with everybody what was your original rash story? When did all of this start and what was the recommendations from doctors at the time?
Dominika: So my original condition was atopic dermatitis, and I was diagnosed with it shortly after I was born. And at the time, I guess in Poland where I'm from, they performed allergy tests and they actually interpreted the results the other way around. So they advised me to be receiving a specific treatment and it was actually just worsening my condition.
So throughout my childhood, I just remember the stories of having to wear gloves like many kids with eczema and atopic dermatitis would have to, because I was scratching so bad that my hands would be covered in blood in the morning. And I suppose my mom was a believer in natural healing overall.
And while she was respecting to some extent what the doctors were recommending, she was completely opposed to putting me on steroids at any point in time. So she was trying all various alternative ways between acupuncture and homeopathy and millions of other things. And I suppose nothing really was resolving the issues. And I just learned to let this condition coexist and it never stopped me from living my life. I actually just would have a rash every three weeks and then it'll go away, and then I would be fine again.
When I was a teenager, I remember that my symptoms have worsened, and this was the only time when I was a teenager that my mom allowed me to use a steroid cream because my face was covered in scabs and I would have to go to school wearing a scarf. So obviously she understood how troubling it was for me.
So I think I used it only three applications, and it all went away and it was fantastic. And then I just lived my life again with continuous rashes every few weeks, every month. But as I said, I was completely accepting of this and I just decided to live my life and I never looked back.
I was a very healthy person, is what I believed. I never had to actually visit GPS or dermatologists because I didn't think that they were going to offer me anything that was going to actually get down to the bottom of what my issue was. And then at the age of 30, when I met back then my boyfriend and now a husband, he was concerned that I was suffering from those rashes and blotches and I didn't look my best at times. And he suggested that I go to a dermatologist and I made an appointment.
And without any testing whatsoever, I was diagnosed with eczema. I was told that it was a genetic condition. And as a result of that, there was nothing I could do to address any of the issues I was experiencing. And I could only manage my condition. And these are the words that are really stuck in my memory actually.
And to manage my condition, because I was completely not interested in steroids, he said that there was this wonderful drug called Protopic that I could use for as long as it's working. I wasn't given any instructions in terms of how often I should use it. And because my rashes weren't very frequent, I was only use it very sparingly for maybe two or three applications at a time, maybe once every month, maybe once every month and a half.
And then I suppose, five and a half years later when everybody in the world was preoccupied with the pandemic, I developed symptoms that I haven't experienced before and my rashes were spreading. It started with really itchy eyes, my forehead, and then all the other symptoms associated with TSW also appeared. And I don't think I need to, I guess, explain to anybody that knows what I'm talking about in terms of the condition, how debilitating and how hellish it is.
And I had no idea what was going on with me. I thought about stress that I was experiencing at work. At the time, I thought maybe my diet has slipped a little bit because of the convenience foods we stored in the house, because we thought that the world was ending. And I decided, of course, I'm going to clean up my diet and my skin is going to improve. And it wasn't. And then I started looking for answers and I got in touch with skin specialists and I was put on certain supplements. And then I got in touch with herbalist, and then I got in touch with naturopaths.
I am a very determined person. I always want to get to the bottom and have a full understanding of what's happening. And that was my mission as well. I was driving myself insane while I was trying to establish a lot of this. And I suppose that was March, 2020 when my condition has worsened so significantly. And then in August, I was probably at the verge of a nervous breakdown because I kept my full-time job, which is relatively stressful and it requires high focus of attention. But I couldn't sleep and I was experiencing all those debilitating symptoms.
This is when I went back to the doctors and I had expressed that in terms of what I believe has happened is that I developed tolerance to Protopic and that it's no longer working for me. I was diagnosed on a video call because that was the only options at the option at the time with infection and severe eczema. And I was prescribed steroids, for the first time in my life, oral steroids. And I was in such a bad place that I felt like I had no option but to take it. In addition, I was prescribed more Protopic, which I decided not to apply anymore because again, my intuition was telling me that this was the wrong thing to do.
So then, I guess once I stopped the steroids, the condition came back. And at the time, I was with a naturopath and she was a lovely lady, but she was totally stabbing in the dark. And it took me a while to figure this out because when you are so down and when you are so concerned about what it is that is happening to you, you become desperate. And this is what happened to me and to many people in the community. And I just accepted everything that she was saying. But at some point I understood that she wasn't going to be the resolution.
I tried other things as well because again, I'm very determined. And I suppose at some point I tried no moisture therapy, which I decided to try because my skin developed some sort of severe reaction to certain things that I was using to moisturize my face. And for three months, I was doing no moisture therapy. However, I felt like I plateaued and my ears were still not clearing, and there were certain areas that just were consistently flaring. So I needed to find something else. And I guess few months before that, I actually figured out that it was TSW, albeit I never encountered anybody that would developed it from Protopic, only from immunosuppressants only.
And again, I was trying various things, however, nothing really was making a difference. I was experiencing flareups maybe every week nearly. I did have one more attempt with a different doctor that is who on his website advertises that he deals with people with TSW. However, when I described my history to him, he said it wasn't really a real condition and that I just had bad eczema and I had to go back on steroids.
Jennifer: Oh my… Wow.
Dominika: Yes.
Jennifer: I'm a little flabbergasted by that.
Dominika: Yeah. So that was a little disappointing.
Jennifer: Yeah, that is disappointing.
Dominika: Yes. So he prescribed me a bit more steroids. He also gave me someone antibiotics. I was fighting with him, but then again, a lot of people around me were saying, “Just say what the doctor tells you to do. You're not getting better with what it is that you're trying to do.” And I said, “Okay, I'll give it one last chance.” And I did. And it was a mistake because when I stopped the steroids, I actually got a massive flare up and my right hand opened up and is weeping for months on end.
But at that stage, I just decided that I just have to ride it out. And in February, I guess that's few months later, I listened to Clare's TSW Podcast and you were the guest on it. And what I found extremely interesting is that I know that everybody's TSW journey is completely different and a lot of people have healed completely naturally. However, those people weren't necessarily the same way I was in the sense, I was never on any the medication, but I was continuously getting my rashes.
So there was obviously something that was causing them. So when you said that TSW is one thing and then you have your underlying condition, and unless you address that, then nothing is going to… Well, your healing is going to be impeded. And this really resonated with me and I said that this is what I need to do. I need to get in touch with people who have a good understanding of underlying causes.
And then I obviously made contact with your practice and I love the fact that were really asking me tons and tons of questions and there was a reason that those questions were asked in terms of my travel history, in terms of my mom's history. And that gave me confidence that we are getting to the bottom of this, which is what I need to do. So yeah-
Jennifer: Oh my goodness. So I think-
Dominika: … that's my long-winded story.
Jennifer: … some questions that I think listeners would be curious, so did you use Protopic everywhere? Where were you generally using Protopic?
Dominika: I would only use it on my face because again, at that time, I was only ever getting a small patch on my face or maybe around my mouth as well. So these were the only areas, maybe once or twice I use it around my armpit. But I guess my face was the most common area, so a patch above my lips or around my lips because they would get red and they would burned and my skin will be peeling. So those were the areas where I used Protopic.
Jennifer: May I ask, did they ever tell you that you could experience rashes that would… I mean, obviously the idea of the medication is to try to shut down the immune system so that you don't have these rashes. I'm just curious, were you ever told that they could spread?
Dominika: No. I was never told that they would spread. The only advice I was given was, “Use it for as long as it's working, and then when it stops working, we'll worry about that at that point.” But it was working for five and a half years because I was using it so sparingly. So I felt no need to go back to the doctor. Yeah. So that's where I ended up.
Jennifer: So I think it's important… Again, and you and I had this little chat ahead of time that there is a time and a place for medication, but we also want to ask what's going on under the surface, which the whole Healthy Skin Show podcast is about that. Like, what else could possibly be going on?
And unfortunately, I think the common conventional route is to mask the symptoms rather than to ask that question. And I don't say that with any disrespect to colleagues and physicians. I meet and talk to many people, but I think that this is a reminder potentially that there could be other things under the surface going on that perhaps it's the… I always look at it as it's your body's way of trying to tell you something is off. And if we just ignore the check engine light of the car, what do we expect to happen down the road? Something's going to break.
Dominika: That is 100%.
Jennifer: Now can I ask when-
Dominika: I couldn't agree more. And it was-
Jennifer: … when you experienced…
Dominika: I think it was foolish. I'm so sorry. I think it was foolish of me to think that suppressing something that was clearly a red engine light was going to resolve my challenge. So I couldn't agree more with you in that you regard.
Jennifer: So you started working with Michelle. And for those of you who are going, “Wait, Michelle, why do I know that name?” You all have probably heard her on the Healthy Skin Show. She's done a number of episodes. She is an associate in my practice and Michelle is amazing. How did that differ? I know people ask me a lot of times, “What is the experience? Can I talk to a client of yours to find out what the experience is?” What was your experience and what has your experience been I guess, in working with Michelle versus you've worked with a lot of other practitioners?
Dominika: I had immediate confidence in her because she was so extremely thorough in the way she was questioning what has happened to me up until then. And she was always very caring and she's always been extremely responsive. And I guess, when she blew me away was when we done some tests and she started going through them and analyzing them. The depth of information that she was able to offer me, just was incredible.
And she also was able to explain how the specific things that she uncovered were potentially affecting me. And that gave me confidence as I said, that we are getting to the root causes, and that's exactly what I needed at that point in time in my journey.
So overall, she has been an incredible support, obviously an incredible, professional, extremely knowledgeable, and I'm delighted to have an opportunity to be working [inaudible 00:18:57].
Jennifer: Yeah, it's interesting. In my practice, we find too, and I don't know if you had this experience with other practitioners, but people will bring to us a lot of tests that no one ever explained to them before. And my feeling is that if I have testing run on myself, I want to know what it says. I don't need to know the exact biochemistry, nitty-gritty, but it should be explained to me sufficiently so I understand what's going on, so that way I can also be on board with how we get to the solution.
And that's a big deal to me and to Michelle, to always make sure that we explain labs very clearly to clients. Sometimes we have to come up with, I will say, creative solutions because sometimes people can't swallow pills, sometimes people are very sensitive to certain herbs or they're allergic to certain herbs. And so it's a really big deal for us to make sure that we're meeting someone where they're at and helping them.
And I know that you've been working with Michelle for, I guess about six months now? Yeah, about six to seven months now.
Dominika: Yes, absolutely.
Jennifer: Can you share with everyone what the difference has been for you, where you started in the beginning compared to your symptoms then versus symptoms now? And I want to be very clear, everyone, Dominika is still in her journey. So this is not a conversation of someone who is perfectly healed. It's important for you all to know that this is a journey. And I want you to also know that going into her answer.
Dominika: Absolutely. So I suppose, one of my first protocols was given to me in April, and a couple of weeks later, I saw immediate improvement in respect of nearly all of my symptoms. The advice that I was given in terms of nutritional supplementation because I was deficient in many nutrients at the time. And obviously the advice in terms of food has made an immediate difference. So I actually couldn't believe how my symptoms were changing because as a part of working with the practice, we are tracking them. And it was evident that whatever has been suggested made so much difference.
My quality of life has changed so much. I also remember having this energy that I probably never have had in my life, and it contributed to the fact that I never ate enough animal protein because I was a vegetarian for over 30 years. And the advice in terms of protein intake has really made significant difference in terms of even my body composition. And even my lip color has changed through supplementation of iron, which is incredible.
So two months in, there was such a significant improvement. I was able to really engage with people socially again. I was able to travel. So I guess it was a really well awaited change that has happened as a result of the work Michelle and I did.
Jennifer: And you're still on the journey together. And I think that's important that everyone knows that this is not… And I think also too, that it's a reminder that everybody's case is different. I mean, I am so happy for you and looking at your before and current photos has just been like, “Wow, I'm so happy for you.”
And some people take longer, it just depends on what's going on. But I love the fact that we can hold space for everybody's journey, whatever it may be, and offer them some opportunity to look a little deeper into what's going on.
Dominika: And that's exactly what I was looking for. Because I'm a very inquisitive person by nature and I have to understand what is happening on a deeper level. So it has really worked for me. And having some evidence to suggest a specific intervention is really important for me to buy into it.
Jennifer: May I ask Dominika, if someone was to ask you what your recommendation would be if they're in a similar boat to you, what should they do? What would you tell them now, where you having all of these experiences with not only using Protopic for a long time, but also using steroids and getting to a very severe place where your skin was incredibly compromised? What would you suggest to them?
Dominika: I probably would say that they should find a professional that will be able to take some of that pain away. And it could be various therapies. There's different things that work for different people. And that I do believe that looking into the root causes is so vital because it's not only the fact that there was an original condition that led you to use either steroids or immunosuppressants, but also, my experience is that whatever underlying issues I had were actually making my symptoms worse. So that was a suffering that I didn't have to go through if I came across the right people to help me.
Everybody's journey is different and everybody's root causes are different, but I think it would give people a lot of comfort to actually start looking at something in terms of evidence because there is so much uncertainty with this condition. And it's one of the reasons why it is so difficult to get through because there's no research and we're only going by what we see on social media or what we're able to research on the internet. And so to have any sort of, I guess evidence-based knowledge is so incredibly important. And it gave me so much peace because I totally felt like I was running around like a headless chicken, from one person to another.
And I guess in the last few months, I feel so much more peaceful because I feel like I'm getting the help that I need. This is a very long answer.
Jennifer: That's okay. I think that it's important for people to hear what your experience is. And I think you're the first person to ever talk about having issues with Protopic on the show. So I appreciate you for sharing what has happened to you. People will ask me questions if there is a withdrawal with Protopic and what happens with Protopic. And I do think it's important to underscore that Protopic is not topical steroids. They are very different. But I think this is something we do need to wonder about is could there be long term consequences to using something like Protopic?
And your story, and I've seen others, there are very large Facebook groups that have people in them who are sharing stories, asking questions that I don't know that doctors may have an answer to, and they may be uncomfortable giving clear answers about why this is happening to certain people. But I do appreciate you sharing your story to help highlight something that is going on and perhaps as we learn more about this, we'll understand it better.
Michelle, and as an aside myself, and obviously I do work with Michelle on all her cases. I'm so grateful that we've been able to support you on your journey to actually having a much better quality of life.
Dominika: Pleasure is all mine. And that's for sure.
Jennifer: Yes, thank you so much-
Dominika: Thank you.
Jennifer: … for being here and sharing your journey and I'm sure that it will be really inspiring to others out there.
Dominika: I hope it helps. Thank you so much.
