My skin story is an ongoing struggle with eczema. Though the low nickel diet has drastically reduced and improved my eczema, it’s not a cure or a perfect remedy. I still use prescriptive creams and experience patches of dry itchy and often embarrassing skin. The patches where my eczema appears, I thought would always consistently remain on my eyelids, around my lips and neck. However lately I’ve been experiencing terrible eczema on my hands, inner elbows and on one of my ears.
Even when I’m the most consistent with the low nickel diet, using my nickel free or low nickel cookware and eating the low nickel diet at home, sometimes my atopic dermatitis will still react. I’ll wake up with scaly itchy eczema patches and it will still itch. My eczema isn’t nearly as severe as it once was, but my skin and that atopic dermatitis truly is a chronic condition.
Knowing about Dupixent (dupilumab) I spoke with my dermatologist this past May to see if I might be a good candidate to try the new biologic drug. Learning it prevents the immune system from identifying allergens, it’s ability to treat atopic dermatitis has been a wonder drug for so many with severe eczema. However I shared my concerns of paying for the drug. To my knowledge each shot costs approximately $1,500 and the recommended dosage is two self-administered shots monthly. Without health insurance and a program that helps pay for the prescription there’d be no ways I could even consider this alternative.
Grateful for the outstanding health insurance coverage and access to health care where I live, I understand a business’ need to try to control costs. I’ve been lucky, the majority of my physicians take me seriously when I discuss health issues, ask a myriad of questions and desire an alternative to pills, creams or shots. Personally I am extremely skeptical of using any prescriptions to treat health issues when hydration, diet and exercise could work. Don’t get me wrong, I love the magic of ibuprofen and antibiotics when I’m seriously sick. Yet, so many prescriptions have side effects that are worse than the actual medical issue the drugs are supposed to treat. What I do think is crazy about the American healthcare system is health insurance companies dictating courses of treatment to patients. I truly understand that medical inflation is three times the rate of regular inflation, which is an entirely different discussion. But in my attempt to get pre-authorized for Dupixent (dupilumab), it was my health insurance company telling my doctor the next course of treatment I had to try before they’d preauthorized his medical recommendation.
When I was first diagnosed with a systemic nickel allergy in 2009, I was prescribed Elidel and Desonide. I prefered using Elidel because it is not a steroid, but it also didn’t do anything to reduce my eczema but made my skin feel oily. Instead of continuing to waste my time with a non-working solution, I have used desonide off an on for almost 10 years. Desonide has worked great when my eczema is flaring out of control, red, inflamed and hurts from the inside. In those situations, I use it as prescribed 1-2 times a day. At the same time, I’ve always been nervous about using it too often as it can thin the skin, especially if your skin during use is exposed to sun. Since I use it on my eyelids, around my lips and on my neck, I fear my skin thinning and I don’t really even know what that could mean long term.
In my attempt to try Dupixent (dupilumab), I was given samples of Eucrisa (Crisaborole) and prescribed Protopic (Tacrolimus) ointment. Really wanting to know its effectiveness I ate the most delectable arugula and red leaf steak salad tossed in a blueberry vinaigrette. When I woke up the next day, unsurprisingly, my eczema was red and ready for the new solution. I used Protopic on my face and neck eczema believing it would be like Elidel or Desonide and only feel oily. Hell no, within an hour, my skin literally felt like it was on fire, like it had experienced a chemical burn. Washing it off only made the situation worse until finally it was washed away. Questioning if this was the experience because my skin was severely inflamed, I tried the ointment three more times. Nope, every time I applied it on my skin this prescription continued to make my skin feel like it was on fire from the inside. Instead I also tried the Eucrisa (Crisaborole) and nothing changed.
Returning to my dermatologist, he said my health insurance company yet again is requiring I try another option before I can try Dupixent (dupilumab). One of the prescriptions I can’t recall, but the one we determined to try instead is the oral pill.
Taking the drug requires my blood work and health be closely monitored, as the drug can cause “shaking, headaches, dizziness, unusual growth of body hair, nausea/vomiting, diarrhea, stomach upset or flushing may occur” or “kidney problems…signs of liver disease…slow/irregular heartbeat…seizures, chest pain.” I filled the prescription and thoroughly spoke to my pharmacist, who mentioned long term use has in some instances caused types of cancer. If the drug’s disclosure needs to say “remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects,” I question taking it all together. In my circumstance, it’s really my health insurance company, not my doctor suggesting I try this medication.
In the end the possible side effects scared me and I can’t make myself take the prescription. I’d rather deal with the ongoing eczema and not put my body through any of those possible side effects. So for now, I’m sticking to the low nickel diet and using Desonide and Benadryl when my skin is severely inflamed. In addition I try to limit my stress and enjoy relief from hiking, meditation and acupuncture.
There are days when I feel my eczema isn’t that bad and other days when the itching drives me crazy. The low nickel diet has truly been a blessing and I am so grateful it’s been such a successful solutions for me, even if it isn’t a perfect solution.
Have you heard or tried Dupixent (dupilumab)? I’d love to hear your skin story or what’s helped or worked well for you in the comment section below.