It's been a four months since I stopped taking Dupixent and I'm happy to share that I've been doing okay! My eczema has maintained mild to moderate, as it became with the help of Dupixent.
Being On Dupixent
I began Dupixent one year ago and took it for eight months before stopping it in order to get pregnant with my second child. I came to the conclusion that Dupixent, along with periodic use of Protopic (which I also took before Dupixent), significantly improved my skin. Aside from healthier skin, Dupixent also caused an intense face-flushing reaction to my first sip of alcohol (very red and super hot), but it would wear off once the alcohol was out of my system and I would be able to have more drinks at that point without the flushing.
Based on available animal testing data, my allergist and I estimated that I should be off Dupixent for three months before trying to get pregnant. It's now been four months since I stopped Dupixent.
Being Off Dupixent
I was scared to get off Dupixent, but it's been okay - my skin has not worsened. Currently, I have flare-up spots throughout my body, but I can sleep, there's no shedding and the spots are containable with Protopic. And there are even times when my flare-up areas are sparse. Let me be clear: the only products I'm using are aquaphor on my face and Protopic for any flare-ups. I'm not even using an antihistamine at this point and have rarely touched my steroid creams. I find my healthy skin situation to be remarkable.
I do still have a face-flushing reaction to alcohol, but it is very minimal. Does this mean that Dupixent is still in my body and whatever's left behind is still helping? Or is the face-flushing caused by something else — maybe Protopic, as a few fellow eczema fighters experience? If so, did Dupixent permanently improve my body somehow? Who knows?! Time will tell. For now, I will continue to live my life, grateful that it does not revolve around my eczema and staying positive that the future will stay on this healthier path. And I will keep my fingers crossed that when I do get pregnant again, I do not experience the eczema nightmare my first pregnancy triggered. I'll take it one itchy day at a time. It's easy to do when the days are unbearably itchy!
Preface: I originally wrote this in my personal journal a few days ago, thinking it was too dark and weird to be included on my blog. In the spirit of transparency, though, and because eczema triggers dark thoughts at times, I'm sharing it here. It's in response to my stopping my eczema medication Dupixent in order to get pregnant later this year. My next dose was due a few days ago.
Walking Towards Darkness
Waves crashing, sun shining.
Beautiful face, calm skin.
Sand in my toes, smell of salt.
Old memories of torture.
Laying in the heat, good sleep.
Just one year ago, all coming back.
I stand up and look away.
A child, a baby. Another one.
I walk forward.
A brother or sister.
I walk further.
It's going to hurt; it's starting.
Motherhood - I want more.
Past the beach, it's getting darker.
Red, pain, hiding.
I'll do it again.
Tiny fingers, my own. #2.
Here I go.
2/16/19 update: 2 years after my first pregnancy, I’ve realized I was probably going through Topical Steroid Withdrawal (TSW). Read more about it on my post about my second pregnancy. Below’s post is unedited and how I reacted to my first pregnancy at the time.
I gave birth to my first baby 15 months ago after a roller coaster pregnancy full of challenging eczema flare ups. True, I'm a chronic eczema fighter, but my ten plus years of eczema did not compare to the eczema I experienced during my pregnancy.
1. My Eczema was Pregnancy-Induced
For the first few months of my pregnancy, I blamed the disruption of my eczema treatment for the severe flare ups. When I wasn't pregnant, I used acupuncture and took herbal pills to control my eczema, but I had to stop both when I became pregnant.
Months later, I changed my conclusion: my pregnancy itself was the reason for my severe eczema flare ups. Maybe it was the pregnancy hormones or my body reacting to the changes in my body, but I blame my pregnancy for causing eczema.
2. Doctors Told Me Steroids are Safe and Okay
My OB/GYN doctor told me that I could take a steroid pack to help handle my eczema. According to my doctor, this medication does not cross the placenta, so is fine.
What a relief I felt! I almost got a steroid pack, but then ...
3. Doctors Told Me Steroids are Dangerous and Not Okay
All my other doctors - allergists, general physicians, even my pharmacist scared me away from taking oral steroids. They all resorted to "ask your OB/GYN," because it seemed they didn't want to be held accountable for a formal recommendation. Ultimately, I didn't take any oral steroids while I was pregnant.
4. Second Trimester: Horrible Eczema
Months four through six were the worst for my eczema, although it started in month three. By "worst," I mean the worst eczema I've ever had in my life. It was the worst few months I've ever experienced, complete with debilitating, leaking eczema all over my face and body that didn't even let me sleep for days at a time. There was edema, weeping, flaking, redness, hot, dry, full of lines. My recovery was swift, hard to believe and with no explanation. After 3 - 4 months of all-consuming eczema, my skin cleared up. Redness went away. Swelling went down. Al the lines on my face left, so I looked 20 years younger. And no more oozing. I could finally sleep.
During the fifth month, my eczema drastically improved on its own, similar to how morning sickness goes away during the second trimester. It felt good to finally shift my attention to the little baby I was baking.
5. Last Weeks of Pregnancy: Eczema Returns, Not as Bad
Late in my third trimester, my eczema came back, although it was not as severe.
6. Giving Birth with Eczema
My skin didn't look or feel great when I went into labor, but it at least my body and face didn't feel like a statue. My eczema didn't get in the way of my giving birth, thankfully. And my husband and I welcomed our first child!
7. Post Birth: Eczema and Medication
After being shamed by doctors to not take steroids while pregnant, I kept battling my eczema without much help. However, I went straight to the pharmacy to pick up my Prednisone pack as soon as I gave birth. Unfortunately, my pharmacist lectured me for taking oral steroids while I was breastfeeding. I have no words for that.
After I gave birth to my daughter, my eczema stuck around. My face looked purple when I took her to baby yoga. My skin wasn't as horrible as my pregnancy's second trimester, but it was definitely not good. It has since turned around and my skin is beautiful, with only mild-to-moderate eczema due to my getting a new allergist and starting Dupixent and Protopic earlier this year.
8. Getting Pregnant Again
Today, according to my OB/GYN, I can stay on Protopic if I get pregnant again. Dupixent, however, is not safe. I took my last Dupixent injection two weeks ago. I will stay off it for about 3 months, then will start trying to get pregnant again. I'm more terrified than excited at this point and am keeping my fingers crossed that my second pregnancy produces another healthy, beautiful baby, but without the eczema torture this time.
One year ago, I felt absolutely defeated. I had been losing in my battle with dermatitis for years and had just experienced the worst eczema of my life, which occurred during my first pregnancy. I felt frustrated and exhausted by my own body's attack on my skin.
I Was Just Not That Into My Doctors
I had been seeing an allergist for years and, though they were helpful at first, I no longer felt confident they could help me. I kept hearing the same typical suggestions: avoid dust mites, don't keep your dog in your bedroom, do a food-avoidance diet, etc. And these things didn't really help. I also didn't have a specific dermatologist at that point for a similar situation: I'd gone down that route and there was nothing else they could do for me. Chronic moderate-to-severe eczema doesn't have a cure - at least it didn't at that point.
Hope on the Horizon: A New Allergist
Feeling hopeless, I decided to search for a new allergist. I knew my skin allergies were serious and a big part of my eczema; maybe I should get a second opinion on my treatment with a new allergist. I did some Google searching and saw there were mainly two best-in-class allergist options in Houston ... and it turned out I already had one of them as my allergist. "It's okay. Maybe the other doctor is different," I thought to myself. I made my appointment and felt hope for the first time in a long time.
Game-Changing Eczema Treatment
Dr. David Engler from the Allergy Clinic in Houston changed my life. Although a big part of my improvement this year is Dupixent, a new medication that came out in 2017, and Protopic, an ointment I had surprisingly not tried beforehand, my skin and spirit were in much better shape within only three months of seeing Dr. Engler.
I've realized there are 5 qualities that make my new allergist the one for me:
1. Looks Forward and Keeps Learning
It feels like a breath of fresh air when your new allergist rattles off research and the latest medical discoveries on eczema and skin allergies. You need a doctor that is obsessed with learning, is an avid reader and actively stays on top of the latest industry research. If it sounds like your allergist is telling you things you've heard repeatedly, it's probably because they're stuck in the past.
2. Goes the Extra Mile
The medical industry incentivizes doctors in many ways - to use certain drugs, to maintain certain costs, to be productive with their time, etc. A good allergist will do what is best for their patients, not themselves. When I needed Dupixent, a new eczema medication, my allergist spent the time to complete all the paperwork and even partnered with a Dupixent representative to get me approved. He went the extra mile and, as a result, that medication changed my life.
3. Builds Relationships within the Industry
No doctor will know everything. A "keeper" allergist for eczema will have relationships with others in the allergy and dermatitis field. It is comforting when your doctor tells you they're going to a conference and will get feedback from other specialists about your treatment.
4. Gives Me Confidence
One of the most important qualities of a good allergist are the ability to give me confidence that he or she can help. It takes time to treat eczema. Literally, time, as in hours spent in doctor's appointments. I wouldn't prioritize my treatment if I didn't feel confident my doctor was helping. And if you're suffering from severe eczema, you feel much more lost if you don't have a doctor you trust.
5. Committed to Helping
After having dealt with manic moderate-to-severe eczema for years, I wanted to be cured by my new allergist. Knowing there is no quick fix, I at least wanted to get on a new, good path for improvement. I sometimes felt like I was my doctor's experiment - and I loved that. With many small wins, I eventually achieved mild-to-moderate, controlled eczema, which is where I am now. I acknowledge this improvement is probably not permanent; it's only been one year since I began seeing my new doctor and started new treatments, but it sure feels good to be in my body right now!
Recommended articles about my first year with my new allergist:
Winter jackets, hats, sweaters and all the fuzzy accessories ... what a great season for clothing and fashion! Unfortunately, for folks with dust mite allergies, it is also a constant reminder of what we shouldn't put on our bodies for risk of a reaction.
Dust Mites in Winter Clothes
Home furniture, flooring and decor is the big topic for dust mite allergy recommendations. No carpet, leather furniture, no curtains, dust often, etc. But nobody talks about clothing and accessories - the things that are actually worn on the body. And all the same type of rules apply: no furry stuff and nothing that gathers dust. The problem is that we can't (and shouldn't) walk around in all latex or leather. Our clothing can't be wiped down with a damp cloth. Dust mites live in our clothing, especially our winter gear like hats, jackets and sweaters that don't often get washed. We're told we should store our clothing in airtight plastic bags, but ... come on ... that's not practical.
Eczema Reaction to Dust Mite Allergy
I just bought a new heavy coat a few days ago with the fur lining (not real fur, of course) and wore it a few times. It almost immediately hurt my neck - the skin that was touching the fur. It got itchy, painful and rashy. When I showered yesterday, my neck burned like I had little needles pricking my neck. My neck didn't visibly look horrible and didn't spur a big all-body eczema flare-up (thanks to my Dupixent and Protopic eczema treatment), but it was more than uncomfortable and a clear reaction to my new coat.
My Experiment: Steam and Vacuum Winter Coat
What a bummer! It was a brand new coat and hadn't even been in my closet gathering dust. The reality, though, is that it had been in a warehouse, transported in a box and hung in a store - all perfect situations for breeding dust mites.
In my house, I have many winter gear pieces that I don't even try to use anymore. I didn't want to put this new coat in that pile. So, I decided to try steaming the fur. Steam cleans clothing, right - it seemed to make sense! But, what about the dead dust mite bodies and fecal matter? After all, it's the dust mite poop that causes the allergy reactions. So, I grabbed my hand vacuum and vacuumed the fur.
And I think it worked! I wore the jacket all day today and my neck didn't hurt or worsen! I'm going to try this steam-and-vacuum technique on all my dusty winter gear.
1. I've tried many steamers and most are terrible. Here's one I love that is highly rated and I use often: Joy Mangano My Little Steamer
2. As for the hand vacuum, my husband recently treated himself to a Dyson V6 Animal vacuum, so I used that, but I think any hand vacuum would be fine.