For my quilting followers, sorry this isn’t quilting, but I had to share this information somehow! Hopefully you can pass it along to a friend who deals with this!
Imagine waking up every hour itching and feeling like your are on fire. That used to be my nights pretty regularly.
My mom said I suffered from eczema as a baby and child. As I got older, I had lots of allergies especially hay fever. I don’t remember having a lot of trouble with my eczema as a teenager but after I was married in my mid 20s, I started having flare-ups. I used topical medications to help but if it got bad, I’d do a round of steroids and I’d be like new. I ended up just learning to live with it and didn’t think anything of it. I never could figure out what my triggers were.
I really didn’t have too many problems in my child-bearing years but in my mid 40s it started back up and was getting worse so I was allergy tested. I’m allergic to dust and dogs. I had an older Labrador Retriever but I couldn’t give her away and how do you avoid dust? Well after our dog died, my allergies didn’t get better. In my late 40s, I was miserable…I’d get out of the shower BEET RED and had lost my hair! It was awful. I finally got patch tested and it turns out I am allergic to methylchloroisothiazolinone, quaterium-15, formaldehyde, and mercapto mix.
So eliminating all the products that contained methylchoroisothiazolinone and all of those bad chemicals/preservatives helped my redness go away! I now pay attention to ingredients in all beauty products and go natural. By going natural that helped but the red, splotchy, itchy skin still plagued me especially when I’d get warm. I’d itch at night if I got the slightest bit warm and would wake up feeling like I’ve been sunburnt. There were days I couldn’t go to work because of the severity of pain and redness. It hurt to wear clothing especially undergarments. I bought a ChiliPad to keep the bed cool at night and that helped but not completely. That was $400 and worth it….helped with menopausal night sweats too!
On top of all of of my skin problems, I was diagnosed with alopecia areata seven years ago and have lost my hair three times. I wore hats at first but as the hair really started falling out I’d resort to wigs. The most frustrating thing about alopecia is that it is a health condition and wigs were not covered under insurance for alopecia….you have to have cancer in order to get a wig reimbursed. Seems crazy, huh? I believe that NAAF and our government is working on that now!
Normally my hair starts to grow back within 9 months but this past bout seemed to take twice as long.
In October 2017, I heard about a new drug for eczema called Dupixent/Dupilumab, so I did my reserach and then talked to my dermatologist and decided it to give it a try. I am her first patient to be on this drug. The drug came out March 2017.
I’ve been through every other treatment known to mankind…from steroids to topicals and the ONLY thing that worked were the steroids. I’ve eliminated gluten from my diet and cut way back on dairy products and even started eating a paleo meal plan. My eczema was still head to toe…body completely red and painful and so very itchy.
When the eczema affected my face it was awful! It seemed to be pretty chronic and rarely went away.
The photos below with my hair were taken in January before my injections began.
On January 17, 2018, I gave my first two injections of Dupixent. A nurse came to my house to educate me on how to do it and it was so easy. Needles don’t bother me anymore after having so much bloodwork done and allergy shots.
On January 31, 2018 I gave my next injection. I was told I wouldn’t feel much but honestly, my skin feels softer and itching had been reduced. I was super excited at the progress already! These injections happen every two weeks.
February came and went and no side effects and still improving and so is my sleep!
March 11-I had a slight flareup (nothing like I’ve had before though) and ended up with pink eye. I treated the pink eye with Pink Eye Relief drops which worked very well! Itchy eyes which could lead to pink eye and cold sores were some “side effects from this drug. But so far, I’ve only had pink eye once and a cold sore once. I take L-Lysine to help with the cold sores.
April 14 – had a big bowl of dairy ice cream and noticed a little breakout on my face and neck. (testing dairy)
May 2 – Used Cetaphil the night before and woke up with hives on my torso and my inner elbows. I usually use Cerave but was almost out so I tried Cetaphil. I’ve been able to use it in the past but because of my sensitivity I decided to stick with what works…Cerave!
Despite these small flare-ups, my skin has been soft as can be, not red, splotchy, and itchy and the best thing is that I am sleeping at night without medication! AMEN! God is good! Thank you for this miracle drug!
May 3-I get a call from my dermatologist telling me that I’ve been denied and wants to rescore my progress. I’ll have had two more injections and she expects to see complete improvement. Talk about a blow!
Now it’s May 5 and I just got a letter from BCBS that my next pre-authorization of this miracle drug has been denied in writing. Living with this type of atopic dermatitis has been so miserable! I don’t want to be without this medication. I’m thankful I’ve been documenting this process to publish on my blog!
Dupixent has been a miracle for me! I wake up refreshed in the morning, Wearing any type of clothing is easy for me now. I’ve had SO many people compliment my clear skin. I always had a chronic red, splotchy face except for when I was on prednisone. It is now so nice to get out of the shower and my skin to not hurt. I’d have to go days without showering sometimes because it hurt so badly.
So here’s this week’s pics of my clear skin! I can wear shorts again and not be embarrasssed by the red splotchiness.
AND BEST OF ALL….my hair, eyebrows and eyelashes are back and fully this time! Not sure if this medication has helped it but I did hear there is a clinical trial of this drug on alopecia patients so it wouldn’t surprise me!
It’s May 22 and GUESS WHAT! Insurance has approved me for another year! AMEN! It’s a NEW ME and I feel great! Oh and by the way, going off dairy has eliminated any minor flare-ups. Since my daughter is vegan, I tried her cheese and it’s delicious! Also there are some great yogurts and ice cream made from coconut milk and almond milk too so I don’t feel like I’ll miss dairy! I am also back at the gym and can sweat like crazy without any burning or stinging!
If you are reading this and have excema, talk to your dermatologist! The Dupixent My Way Program is awesome too! I have a registered nurse assigned to me that calls me to remind me of my injections, answers any questions, etc. too! They have a co-pay assistance program and I pay $0. Normally it would be about $80 per month which is SO worth it with my insurance. This drug is crazy expensive too! BUT there’s hope and healing!