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.
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.
A true 24-hour snapshot of my living with a dust mite allergy that causes eczema reactions. Incidents occurred one week ago.
Thursday Afternoon: Allergy-Injected Arm is Red, Swollen and Itchy
Two and a half weeks ago, I started immunotherapy with the cluster allergy shot method to address my dust mite and grasses allergies. I go to the allergist twice a week and get three separate injections of each allergen, dust mites on the left arm and grasses on the right arm. After each dose, I wait 30 minutes to ensure I don't have a reaction.
My grasses-injected arm has felt and looked unaffected, with only a little bit of dryness in the area. My dust-mite-injected arm, however, has been swollen, itchy and painful. It aches to the point where I can't sleep well.
Thursday Evening: Eczema Reaction to a Couch Pillow
I have the typical lifestyle of someone with a serious dust mite allergy: blinds instead of curtains, wooden floors, no rugs, leather furniture, difficulty wearing winter clothes, encased mattresses and pillows, etc. However, there's one throw pillow I have on my leather couch that I've not addressed: I need to replace it with an encased throw pillow.
I caved and used this unsafe pillow for a few hours while I worked on the couch. My eyes started watering and an eczema reaction occurred on one of my eye lids. Thankfully, the reaction was contained, didn't spread, and went away within an hour after getting off the pillow and adding Protopic cream.
Friday Morning: Dust Mite Allergy Injections Causes Eczema Reaction
I received my first set of injections, waited 30 minutes, got my second set of injections, waited 30 minutes ... then, suddenly, right before I was to get my third set of shots, I realized my neck was a little itchy. I looked in the mirror and saw a serious eczema flareup getting worse by the second. It started to spread onto my right inner elbow and possibly my legs (felt itchy, but was wearing pants, so couldn't confirm).
My allergist and nurse quickly gave me a low-dose adrenaline shot. Low dose?! Within minutes, my hands were shaking and my heart was racing. I don't consume caffeine, so my body really felt the adrenaline. According to my allergist, my adrenaline shot was comparable to a low-dose EpiPen shot.
I've never used my EpiPen, but now know how it would feel. Honestly, I never considered using an EpiPen for an eczema reaction, no matter how severe, but my allergist says a reaction on my skin can shift to my throat (i.e., impede my breathing) quickly. Point taken.
Friday Afternoon: Dust Mite Allergy's Eczema Reaction Gone
Success! My eczema reaction to my dust mite allergy shots went away within a few hours. I am very lucky that my eczema is in a contained state with my current treatment (Dupixent, Protopic and Vitamin D supplements). I've never experienced such a quick and severe eczema reaction only to see it disappear within the same day.
Key takeaway: My dust mite allergy is legit!
I'm sitting in the waiting room of The Allergy Clinic on Fannin Street in Houston, waiting to take my third set of cluster allergy injections. I saw my allergist again last week and gave him the low down: my eczema is still mild to moderate, but more on the moderate side lately. Since my doc visit, it's back to mild, thankfully. Dr. Engler recommended I try allergy shots again, but using high dosages and targeting very specific allergens this time.
Been There, Done That, So Why Again?
I've tried allergy shots for years, before switching allergy clinics and coming to Dr. Engler last year, and I've not been convinced that the shots help me in any way. But I trust my doctor and he has good reasons (with research to back it up) on why this makes sense for my eczema case:
- Allergy shots are best done when eczema is under control; otherwise, the injections can cause eczema to worsen. While under Dr. Engler's care, my eczema shifted from being moderate to severe to being mild to moderate. It's not completely gone, but is definitely under control.
- Immunotherapy (allergy injections) for dust mite allergies has proven to help eczema patients, according to research studies. And dust mites are academically proven to affect eczema. I am not confident about much regarding my eczema, but am absolutely confident that my dust mite allergy is severe and totally affects my eczema.
- Cluster shots are a good way to do an immunotherapy treatment in a speedy, efficient manner, compared to typical treatments that take much longer. They are also a more convenient alternative to "rush" immunotherapy treatments. Here's an article my doctor recommended I read to learn more about cluster shots:
I'm excited to start my immunotherapy treatment today for dust mites and grasses. Did I mention I also am pretty allergic to grasses and trees? Hopefully it helps me be able to cuddle with my doggie who rumbles around the grass and keeps those allergens on his fur.
Recap of My Current Eczema Treatment Plan
Immunotherapy (cluster shots) for dust mite and grasses allergies, biweekly Dupixent injections, daily Protopic ointment on eczema patches, Vitamin D supplements and probiotics. I don't think the probiotics have helped and am not sure yet about the immunotherapy, but the Dupixent, Protopic and Vitamin D supplements seem to be helping.
Dupixent, Vitamin D, Probiotics and Protopic for Last 4 Months
I've been on Dupixent for almost 4 months. I'm also on Vitamin D supplements, the Align probiotic and use the generic version of the Protopic ointment. Full transparancy, I traveled a bit about a month ago and stopped consistently taking my Vitamin D and Align. I also didn't have Protopic for a few weeks.
My Skin Lately
In the last few weeks, my back has become flared up to the point of bothering me while I sleep, work, drive, etc. My arms have also been flared up, as have my legs. These flare-ups are nothing like they were earlier this year, I'd categorize them as moderate eczema flareups, since I know what severe flareups can be like. Still, it is uncomfortable and very itchy.
New Results: Low Vitamin D
I tested my vitamin D levels yesterday and the results are in: 38 ng/ml. I need to be at least at 50 ng/ml, though my doctor recommends it be much, much higher for eczema fighters. This is now the second time that I have low Vitamin D results while my eczema is flaring up. And my skin has improved in the past as my Vitamin D levels go up.
Other Possible Reasons for Flareups
An eczema fighter always has some off-the-wall, in-her-gut feeling about what could be causing her flareup. Lately, I've been thinking it's alcohol. Since starting Dupixent, my face has gotten very hot (physically hot, feels sunburned, looks bright red) when I drink sometimes, within the first few sips. I've realized that if I keep drinking, it goes away by the end of that drink. I started doing that the last month and I've wondered if my body was finding a different way to tell me to stop drinking - by flaring up on my body. Not sure, though, since the eczema lasts weeks after having drank.
Conclusion for Today
I've had so many conclusions the last five years! Today, I think my eczema flareups are related to my low Vitamin D levels. And I think my flareups are moderate instead of severe because of Dupixent and Protopic. I'm still not convinced probiotics help, but it doesn't hurt to keep taking them. Short term plan: I will keep taking my Vitamin D supplements (2,000 units / day) and will not miss a single dose.
I'm feeling a bit of the eczema blues.
- My back is itchy in that can't-reach spot.
- I regret promising my husband I'd stop using the Apple TV remote to scratch my back. It has perfect sharp edges!
- 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?!
- I am scared. Is it going to get worse?
- 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?
- 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.
- 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.
- My face is still clear. Best thing ever!
- Shedding, weeping skin does not keep me up all night.
- 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.
Sometimes I optimistically wonder if I've outgrown my fragrance allergy. Answer: nope. Confirmation: cologne-filled Uber ride drive my skin bonkers. Details below.
- Uber driver sprays a ton of cologne while in his car right before picking me up. Either that or he spilled a bottle of cologne in his car.
- I get in the car and can barely breathe because of how strong it smelled. It was beyond unpleasant.
- My legs got itchy within a few minutes. Oddly, the itchiness was on my knees, which is not a typical flare-up spot for me.
- I get home and am still itchy. Plus, my hair and clothes reek of the cologne.
- I shower and apply Protopic (generic brand) on my knees. Unfortunately, Protopic hurts before it helps, so my knees get hot and more itchy.
Who needs patch testing when an Uber ride can confirm skin allergies?
I can't drink alcohol anymore!
After 5 weeks of taking Dupixent, all alcoholic beverages make my face get super hot and extremely red. I've not had more than one drink at a time and sometimes just a few sips. If I drank more than a few cocktails in a row, my face may explode. I'm not going to try.
My reaction to alcohol is embarrassingly bad.
Two weeks ago, I was at a restaurant and thought a glass of the Rosé should be fine. A few sips later, the waitress was at my table asking if I was okay and assuring me that there was an EpiPen in the back. I had to give my delicious wine to my husband. Sigh. Within fifteen minutes, my face started feeling and looking better. It probably took 30 minutes to clear up.
Today at work there was a fun drinking and eating event. It was Cuban themed, so there was a frozen margarita machine filled with mojito mix and rum and a variety of Cuban sandwiches. I poured myself a little mojito. Within fifteen minutes, I could feel my face get hotter and hotter. Nooo! Not at work in a conference room with a ton of people! But it was too late. My face got redder and redder. I avoided seeing people, because it was that jarring. It took longer to cool down today (almost two hours), probably because I drank the entire small drink before realizing the consequences.
I don't use the victim card often, but I'm gonna grab it for a minute. Come on, universe! I have spent almost 13 years with eczema so severe at times that it significantly affects my life. I finally see a light at the end of the tunnel with a new medication and now I can't enjoy alcohol - why?!?!
Fine - I won't drink.
If this is a test to determine how much I really want Dupixent, then fine. I won't drink. Because I can't hide a beet-red face or handle my burning skin, I'll give up drinking. Goodbye delicious wine, mojitos, moscow mules and margaritas. :( This Dupixent medication better be miraculously good soon!
October 25, 2017 Update:
Workaround Identified: Keep drinking and it goes away
I have determined that if I continue to drink, my face will cool down and go back to normal, causing no further reaction. So, if I have 2 drinks, my face gets super flushed after the first sip, but by the end of the second drink (assuming, I'm not chugging them), my face would have cooled off. Last Saturday, I drank a small margarita at 12PM. My face didn't hurt at all (doesn't always), but it did get super red. I had a happy hour at 4PM and my face didn't get flushed at all that for those drinks. Not sure how long the "already flushed, so won't flush again" workaround lasts, but is interesting.
Same alcohol reaction happening to other Dupixent users
I've heard of two other Dupixent users that have the same severe face flushing reaction from alcohol. One of them confirmed they can drink through it and it doesn't come back for the remainder of their drinks. Again, interesting ...
February 3, 2017 Update:
Non-Alcoholic Ginger Beer Drink Caused Same Reaction
Oddly, the non-alcoholic cocktail I had a few hours ago triggered the exact same hot, red, tight-skin feeling on my face. I confirmed with the waiter that it had zero alcohol, but it did have ginger beer, which is what I think must have triggered the reaction. Very interesting.
Drum roll, please ...
NOT MUCH HAS CHANGED.
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!
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.
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!
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!
Scratch, scratch, itch, itch, scratch.
Reach, reach. Find a back scratcher.
Loooong moan. Feels so good.
January Through Early February
I started 2017 with moderate to severe eczema throughout January. In early February, six weeks ago, I spontaneously decided to get a new allergist, because I felt I was in a rut. He found a vitamin D deficiency in me, which he says is common with severe eczema patients. My doctor also had plans A, B and C for how he would treat my eczema. I was ecstatic and hopeful.
Vitamin D supplements: A blood test showed my vitamin D level was 23.7 ng/ml. The normal rate is 40-60 and should be even higher for eczema sufferers, according to my allergist. I was prescribed vitamin D pills of 10,000 units each and took 2 pills per week. A few weeks ago, I got tested again and my vitamin D level was 77. My allergist told me to take 1,000 units of vitamin D per day moving forward.
Antihistamines: Before seeing my new allergist, I had been taking two Claritin Reditabs every morning for months. He recommended I increase my antihistamines and also take two Zyrtec in the evening. I don't think the brands matter, but I have a preference for Claritin Reditabs.
Probiotics: My mother-in-law has an endocrinology degree and is a big believer in probiotics and gut health. She recommends Align to help my eczema. I asked my new allergist about this and he agreed and said it helps some people, so asked that I take Align daily.
Steroid Pills: When I saw my allergist in early February, I begged for steroids. Within a few days of my steroid pack, my eczema began returning! So, at my two-week checkup, my allergist told me to stop my steroid pack and take 10mg of prednisone daily for ten days - the steroid amount I took before my eczema started returning during my steroid pack. He hoped my vitamin D levels would be high enough to help my body fight the eczema when the ten days were up. I finished the steroids three weeks ago.
Steroid Creams: For at least two years, I've been using Alclometasone Dipropionate Ointment (0.05%) for my face and Triamcinolone Acetonide Ointment (1%) for my body. My doctor asked me to continue using that and I have been. In my doctor appointment one week ago, he gave me Tacrolimus Ointment (Protopic, 0.1%) for my face, but I haven't had to use it yet.
Bleach Baths: My allergist recommended bleach baths in my first two appointments, but I was hesitant, so he recommended CLn body wash as an alternative. In my last appointment, one week ago, my allergist pushed harder on my doing bleach baths. I've taken three so far and they're not as bad as I expected! I was really scared to put my flared-up body in bleach water, but it's minimal bleach and doesn't hurt much more than plain water. I use a quarter cup in a bathtub of water, but it can be up to a quarter cup, depending on the bleach's concentration.
Foods: I was vegetarian for three years until last November, because my newborn was allergic to my breast milk. I began eating meat and fish, but stopped consuming dairy and soy. I stopped breast feeding two weeks ago and added dairy and soy back to my diet at the same time. I've not gone back to vegetarianism yet.
Regarding my food allergies, I've had tons throughout the last 6 years, but the number of allergies has decreased in each new allergy test. When I was tested in February by my new allergist, my results showed zero food allergies!
My Skin Today (End of March)
My face is 95% better and my body is 50% better. My eczema is mild to moderate now versus moderate to severe. Although my body is slowly getting worse since I've been off steroids (mainly on my back and arms), it's still better than it was in January before my new treatments. I know eczema too well to think I've been cured and know there's still a tough road ahead, but I'm an optimist at heart and I've sure felt positive about my recovery so far! And others are noticing as well. The grocery store cashier carded me last week and afterwards still didn't believe I was over 21! And a coworker (female and a friend) randomly told me how beautiful she thought I was - and even on a day when my face wasn't 100%. I feel pretty again!
There may be a light in the tunnel for me. I recently found out I'm vitamin D deficient, which, according to my new allergist, could be quickly supplemented for a highly likely improvement in my chronic eczema condition. We'll see.
My Steroid Treatment
In the meantime, a week ago, I caved and started a new steroid pack. It's always my last resort and I suffer for weeks, sometimes months with a bad flair-up before taking the prednisone steroid route.
60 milligrams a day were great! Down to 50 milligrams ... still okay, with an itch here and there. 40 milligrams ... nope. At 40 milligrams, with still a week left of steroid pills, my eczema started coming back on my neck. I knew it was going to come back hard again.
After finding out recently that I was indeed low on vitamin D, my eyes filled with tears of hope and happiness. The struggle has been real. For twelve years. When my eczema started returning during my current steroid pack, I decided enough was enough. I'm not doing this anymore. If there is medication available that will suppress (and not just treat) the symptoms, I will take it, regardless of the risks and side effects. I will not go back to work on Monday after my maternity leave ends with a red, swollen, oozy face, exhausted from staying up all night scratching my body. Under the supervision of my allergist, I'm taking 50 milligrams of prednisone per day for the next few weeks, while also using steroid creams as needed and taking probiotics and a ton of vitamin D supplements.
I choose a more comfortable life for now and hope the future is good to me and steroids stop being necessary. Between my vitamin D levels and soon-to-come eczema medications, I am still hopeful. Having hope is as good as it gets sometimes; I'm grateful for it and excited for the future.
Last week, after weeks of difficult flare-ups, I decided to try a new allergist. I've only used one and have had her for ten years. Although she's a well-recommended doctor, I felt I was in a slump. I was tired of steroids, the hot skin, the redness, the flakiness, the itchiness, the discomfort, the swelling, the horrible way I looked, the lack of sleep ... I needed to try something new. I wanted to stop the eczema altogether and not just treat it. Wishful thinking, I know.
I went to my new allergist a few days ago and got retested. My amazing husband and baby came along to support me while I got stabbed with a trillion needles. Typically, the full back is used for the allergy test, but my lower and upper back were super flared up. I convinced the nurses and doctors to use the top of my legs (they finally cleared up a bit!) and parts of the top of my arm, along with the middle of my back. They were the only clear parts of my body and it was just enough for the allergy test! Score!
A trillion needle stabs later, the results showed I have super severe dust mite and cat allergies. I knew that. Oddly, all my food allergies were gone! My new doctor was very inquisitive and seemed super knowledgeable and experienced. He wanted to test my vitamin D levels, because in his experience it tends to be low with eczema patients. This was news to me! I got the blood results today and my vitamin D is low! This means I can get vitamin D supplements and hopefully my eczema gets much more under control. My doctor wants me to continue my allergy shots for the dust mite and cat allergies, but get much higher doses than what I was doing before with my old allergist.
New doctor, new results, new hope. This is the best day in a long time ... since I had my baby four months ago. I am so happy and hopeful today! Fingers crossed that I am on my last steroid pack now!
Sunburns shouldn't be on my mind in January, but I live in Houston. I went for a 3-mile walk at the park yesterday with my baby and it was hotter than expected. With little shade, the sun was beaming straight at me. I was too worried about shielding my kid from the sun that I didn't realize I was getting a sunburn on my already-flared up face. In retrospect, I should've gone home right away!
My Sun-Burned Face
It's hot to the touch, is very swollen, has huge bags and lines under my eyes, is leaking because I scratched a ton this morning, is super itchy when I moisturize it with Aquaphor (heats up my skin even more, causing it to itch an intolerable amount) and is now super dry and crusty, because the moisturizer wore off (okay, it was scratched off!) and the leaking dried up.
I know four things for sure:
1. I'm not moisturizing my face anytime soon! It'll make my skin hotter, super itchy and won't be very helpful at this point.
2. I'm not washing my face for awhile. The water will burn and my face will dry up even more.
3. My dentist must have thought I was a hot mess when I showed up to my 7am appointment today with my face swollen, red and wet. Without her knowing it was an eczema flare-up, she probably thought I was a fast-aging, super-tired new mom. I am, but typically look much better than I did this morning!
4. This flare-up will pass. And next time it's super hot and sunny when my skin is flared-up, I will get out of the sun and go to an air-conditioned room!
Do you Reddit? I do and I stumbled upon a great eczema post tonight around 4:30am as I distracted myself online to avoid scratching. These tips have helped others, so I will share them on behalf of a Reddit and @metalola.