Drawing my Eczema

I’ve drawn my current eczema flareups the way I did years ago when my eczema was uncontrolled and I journaled my eczema and food intake daily. I’m at the point where my eczema is intolerable more often than it is tolerable. I’m too itchy, my blood is getting on things, and my flared skin is hot to the touch. BUT my face has been fine, so I am over-the-moon grateful.

Last weekend, as I sat at a park chair on a hot summer day, watching my kiddos play, my skin hurt a lot, all over. I was losing my stamina for dealing with it. At that moment, I started considering Dupixent again. It made me sad that my mind went to Dupixent - because I wasn’t going to consider taking it again unless my eczema was chronically moderate-to-severe. I’m not ready yet. I’m grateful to have Dupixent as an option, but the long-term side effects worry me a bit. For example, my face still flushes sometimes when I drink alcohol (a Dupixent reaction), even though I stopped taking the medication three years ago.

Last week, I finally started my dust mite allergy treatment. Today, I started a new homeopathic treatment recommended by my acupuncturist, whom I started seeing again last month. I will try these things and if my eczema doesn’t improve, I will consider Dupixent again. It helped me once and I trust it will help me again.

Skin Status: 3 Months Post Baby

My baby boy was born 3 months ago. I had a skin-healthy pregnancy with mild-to-moderate eczema. Since giving birth, my eczema has stayed in the mild to moderate range, leaning more on the moderate range.

Possible Protopic Withdrawal Effects

I wonder if my worsened skin is a reaction to my hormone changes or my having to back off a bit from using Protopic. I still used Protopic the last three months, but was low on it for about 2-3 weeks. I’ve since gone back to liberally using Protopic and my skin has been improving. I’ve heard Protopic causes withdrawal effects; it’s something that makes me nervous.

Skin Condition

In the last two months, I’ve been flared up on my forearms, triceps, elbows, shoulder blades, lower back, hips, hamstrings, calves and ankles. There’s bleeding, painful showers and through-the-night scratching, but my face has stayed healthy, so I am grateful.

Current Eczema Treatment

I’m still only on Protopic and I don’t plan on backing off at this time. I don’t want to go back to Dupixent yet if Protopic is keeping my skin from having severe eczema. I worry about Protopic side effects, but also worry about Dupixent side effects. Eczema is an autoimmune condition. I don’t think I’m going to like any medications, because they suppress my immune system and the immune system has a very important job. That said, I don’t want to live with severe eczema. It’s a dangerous game of balance that I am playing. For now, I will not change things and will keep putting my trust on Protopic (as I bite my fingernails nervously).

Doing Well, Sans Dupixent

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!

My Pregnancy with Eczema - Updated

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.

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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

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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

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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

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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

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My skin didn't look or feel great when I went into labor, but 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

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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. 

I'm Not Complaining; I'm Just Itchy

I'm feeling a bit of the eczema blues.

1. My back is itchy in that can't-reach spot.
2. I regret promising my husband I'd stop using the Apple TV remote to scratch my back. It has perfect sharp edges!
3. After months of being mostly clear of eczema, my body is getting little flareups again - and they are in the same spots as before! How can it remember?!
4. I am scared. Is it going to get worse?
5. Since starting Dupixent 3 months ago, my face gets unbearably hot and red when I drink SOMETIMES. I still haven't identified a pattern! And until I do, I will continue drinking to figure it out. ;)

Alright, let's not throw a pity party. What's going well?

1. My skin could be so much worse. SO, SO, SO much worse! Technically, it's still about 80% better than it was in 6 months ago. 
2. Dupixent, Vitamin D supplements, Protopic and the Align probiotic seem to be helping. I don't know which one is helping the most and I don't have a lab with human bodies available to conduct testing, so I think I'll just keep doing all four. 
3. My face is still clear. Best thing ever!
4. Shedding, weeping skin does not keep me up all night.
5. I'm no longer waking up with my eyes swollen and stuck shut.

Well, that got dark fast. Things are so much better than they were a year ago. I can have a life. I can travel. I can focus my attention on my beautiful 10-month-old baby. I don't have to hide at home, avoiding work or friends. If, for whatever reason, my body is currently undergoing a flareup phase that consists of a few red, itchy spots, then that is a WIN. A flareup a year ago would've been completely debilitating and demoralizing. Yes, I will take that silver lining, make lemonade, keep my chin up ... it's all rainbows and puppies over here.

One Week After My First Dupixent Injection

Drum roll, please  ...

NOT MUCH HAS CHANGED.

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Last night, I accidentally bled all over my duvet cover - the white part. My fault for even having a white part on my duvet cover! And I've been super itchy on my body the last few days. But the top part of my left foot might be healing, so that's a plus!

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Onto the next week. I have high hopes it'll keep getting better. My face has been good for months now (I have my face back!), so at least there's that. 

My First Dupixent Injection

The first day

It came in the mail yesterday, packaged to stay cold during shipment. When I got home from work, I put it in the refrigerator right away. I was nervous and excited to do my first injection that night. Unlike most evenings, I continued working in the evening on my computer while on my couch. At 10:30 p.m., I shut it down and went to the fridge to get my Dupixent with my husband - I asked him to be with me for moral support and because he's good at reading directions. It's a good thing I did! He noticed the medicine needed to sit at room temperature for at least 45 minutes first. Boo. No shot on the first night.

The second day (today) 

After misreading almost every step in the FreshEats meal I cooked tonight, I ate dinner and then pulled out the Dupixent to let it warm to room temperature. 45 minutes passed, so I re-read the instructions and chose to inject my tummy (it is indeed as scary as it sounds!). I'm supposed to pinch a chunk of my skin from either my stomach or thigh and pull it out for the injection - how the heck would one do that on their upper thighs? I'm still chunky after having a baby seven months ago, but not to that point! On my tummy, however, I can pinch a ton of skin (AKA fat) out! Next, I disinfect the area with alcohol and blow on it so it's not wet. "Do not blow on it," my husband tells me, reading the instructions out loud. "Oh. But I don't want to do it when it's still wet, because it hurts more," I tell him. I know, because I did my own allergy shots weekly for years. "Let it air dry," he said, reading the instructions out loud again. He really knows how to read every detail! 

 Now I'm ready, but I get scared at the last second and ask my husband to sing to me. The needle is intimidating and big! He sings "Sings a Song of Sixpence" to me and I go for it. It's surprisingly hard to push the medicine down - even though the instructions warned me that would happen. I was holding the needle wrong with my small hands, because I couldn't put enough pressure on the top to push it down. So now my husband is both singing and pushing down the medicine with me. Then it's over! I feel no different, but know it's a big deal. My husband, on the other hand, is focused on how queasy he feels - he hates needles!

Imagining tomorrow

Will my back, arms and legs be clear when I wake up? Will my itchiness be gone? Will I wake up in the middle of the night needing to use my wooden back scratcher? Will I be able to pick out an outfit in the morning without considering if I'll be able to scratch or if blood will be obvious? Will my next shower not hurt? Will the blood stains on my sheets disappear? It'll probably take longer than a few hours for my skin to improve and my sheets won't miraculously clean themselves, but I'm still hopeful for a better tomorrow!