Christy CushingMy 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.
Christy Cushing
Stevie Howe
23 comments
You really have been a blessing to us. It’s so encouraging to know things we’re experiencing are normal and that we aren’t alone. Thank you so much!
JD,
Thanks for your comment and appreciation! I agree it’s helpful for all of us to know our experiences aren’t isolated, but shared, especially when things are difficult.
Warm regards,
Christy
I have been using Eucrisa for about 4 mos and has decreased the eczema. Its now only on my arms. I use it 2x daily no side effects. The itching goes away. I did research on dupixent. Spoke to nurse at Regeron. I saw side effects…can hurt the corneas of eyes and cause dry eye. I already have blepharitis and glaucoma in family…she said don’t even think of it. Its $37,000 yr. I got approved by insurance but turned it down. Money making pharmacies..drs getting kickbacks..insurance companies making money. Women are losing their hair. Pharmacists don’t fill enough prescriptions. It’s too new a drug..it’s a public relations movement on tv now. I’m staying with Eucrisa and 100% petroleum jelly. I dread getting up and living with this. It wears you down. Makes you depressed. 8 straight months now. My loss of my 16 yr old yorkie put my immune system in overdrive.
Hi Linda,
That’s great Eucrisa has decreased your eczema without side effects. I understand how challenging living with atopic dermatitis can be, in addition to dealing with personal loss. Hang in there.
Christy
Hi,
I had a patch test done because I was battling eczema for five years. I am allergic mostly to fragrance and a few other things and nickel. Supposedly only contact allergies.
After one year staying away as much as I can from my triggers, I am still braking out, all over. My naturopathic doctor and other sources blaming it on a congested liver.
The liver can not detox enough so it releases it through the skin.
At the moment I am trying to detox the natural way through food: smoothies, coconut oil and beet kvass. Hopefully that will help. But it is hard to say if I am detoxing or braking out from allergies. Only time will tell, very frustrating. Heidi
Hi Heidi,
Thanks for your comment. That’s interesting to learn about congested liver and liver detox. I hope your attempts to “detox the natural way” work to resolve your eczema.
I am allergic to nickel, though I don’t regularly react when I come in physical contact with nickel. They say that the more you come in contact with nickel the more sensitive you become and overtime my nickel allergy became systemic or internal to where I react when I eat foods. The low nickel diet has been the most effective way for me to resolve my eczema.
Warm regards,
Christy
I have been on Dupixent since April. It was a month-long battle for my dermatologist and her nurse to get my insurance to allow me to do it. I qualified for this special program that Dupixent offers, so I do not have to pay for my injections (Praise God). I do two injections a month on my own, which was pretty daunting at first but I have gotten used to it. Within the first month I noticed that my itching had stopped. The second month I still experienced a little itching but it was manageable.
The side effects (for me) are the drying of the skin on my eyelids, around my eyes, and my mouth. I have to moisturize twice a day so that my dry skin does not show. The dry skin does not itch, but it it is pretty visible. There has also been some skin discoloration due to the dry skin.
I also really like Eucrisa, but my insurance company did not want me to use it. Crazy! It was the best ointment I had ever used on my eczema and dermatitis. My dermatologist gave me samples as long as she could.
Hi Shayla,
Thanks for you comment and sharing your own story. That’s wonderful to hear you were able to get pre-approved for dupixent. That’s interesting your still experience eczema symptoms despite the itch being removed. I would have believed the eczema would disappear, since the drug is preventing the immune system from reacting. I do believe it’s crazy your insurance company wouldn’t allow you to continue using Eurisa if it worked well for you. I’m ever so grateful for my health insurance, but the literal hoops we have to jump through for paid health care, I could do without.
Best,
Christy
I use a product called Infinite Aloe and love that it is all natural. Infinite aloe is a smooth lotion that is cooling, soothing and you can use it multiple times a day . You can get it online so it is very convenient. Sometimes when I break out it is like tiny blisters and feels like a burn. Infinite Aloe really takes the pain away fast.
Hi Bernie,
Thanks for your comment. I checked out Infinite Aloe online. That’s great it works well for calming down your skin. Unfortunately, because it contains Isopropyl Palmitate (from coconut) it wouldn’t be great for my skin. Coconut always causes my skin to react!
Warm regards,
Christy
Did you ever try out any antihistamin allergy pills and do they work for you?’
Hi Mai,
Yes, I take Claritin 24 Hour Non-Drowsy Allergy Relief Tablets – Loratadine. I usually only have to take it in the spring/early summer and not year round for my hayfever.
Warm regards,
Christy
Christy,
I am currently on Dupixent and have been after a systemic eczema reaction that lead to a series of anaphylaxis, multiple ER visits, and finally having to take off 3 months out of work because my skin was so eroded that I could hardly move around never mind be with it enough to do my job. The drug works but it does take time to build up in your system. It should also be noted that it is not a miracle drugs and you still need to use it in conjunction with steroid creams to be completely clear. I suspect I have SNAS and I am going for patch testing this month. The only side effects I have noticed is my already blurry vision becoming worse but it wasn’t enough for my eye doc to be concerned, he just changed my Rx. Also, it makes your hair grow, fast and dark. All hair. I feel like a beast I feel as though if I’m not on top of it weekly, it gets out of control. To your point, insurance companies do unfortunately make you exhaust every other option before placing you on this drug because it is so expensive. If you can acquire insurance and get approved for it, you can apply for a grant that covers some of the cost directly from the manufacturer. That’s what I did. I have very good health coverage through my job and the grant from Dupixent covers the rest so as of right now, I pay nothing thankfully. When I tell you this drug saved my (quality) of life, I couldn’t be more serious. I wasn’t able to work, have intimate time with my partner, and I was riddled with anxiety at the thought of leaving my apartment because I looked like a leper. People would regularly ask me if I had survived a fire, have chemical burns, or if it was contagious. I am currently looking into more natural ways to heal my gut, and therefore my skin so I won’t have to be on this forever because not only is it uber expensive, it also renders me useless for 24-48 hours after my partner gives me the shot. (I can’t self administer…too painful…it is very thick and BURNS when it’s injected. ) Overall, it is worth it for people like me who would not have a life, personal or professional, without it. Hope this helps! Email me with any other questions.
Hi Alexandra,
Thanks for your comment and sharing your story with dupixent! It has a proven track record for being a safe and effective drug for many with severe atopic dermatitis. It sounds like that’s been your experience and dupixent has radically improved your skin. I know how challenging uncontrolled atopic dermatitis can be and you speak to so many of the challenges many of us with this type of eczema deal with regularly. Thanks again and I’m so happy for you!
Warm regards,
Christy
I have been on it for about a year and MAN does it burn! Glad it’s not just me. I will say it’s helped a TON with my hands (insurance denied med for two years until my new derm wrote a laundry list letter of why I could not use alternatives, and I’d already tried a LOT). Sadly it would seem that I’m having issues with the Demodex mites that are a normal feature of human skin, but that have proliferated since being on Dupixent. resulting in facial flares and blepharitis. Really at a crossroads as to what to do now. It’s hard to pick the lesser of two evils when there’s so much unknown! But I hope it’s helping you and that the benefits are outweighing side effects.
Christy,
I was diagnosed with a Nickel allergy in 2017 and I have two other allergens. Following a low Nickel diet got my rashes under control after 6 months of due diligence. Then in July an eczema rash bloomed from my chin to my chest. It was read itchy snd painful. My derm gave me prescription creams and ointments to try. No improvement was made. It was my dermatologist that recommended dupixent and I wasn’t sure how i felt about taking it. I joined a FB group about it and people taking it said that if they needed to go off of it that they could but eczema came back. I decided to try dupixent as my rash was quite uncomfortable like a bad sun burn. It took 2 months for the pain to stop. At 3 months the rash was gone. I get 2 doses, a months worth, at a time and my out of pocket is $250. So $3k for the year. No negative side effects to report yet. I haven’t tested myself to see if I can eat more foods but that comes next. Excited for the future.
Hi Kristi,
Thanks for your comment. It’s wonderful to hear that dupixent has been such a great treatment tool for you and that you’re excited for the future! My dermatologist also recommended I start using dupixent after eating a low nickel diet diligently for nearly a decade. I switched employers and my new health insurance covered the medication. I also signed up for the myway co-pay assistance program that dupixent offers. I have been able to eat green leaf salads 1-2 times a month. I also try to eat other higher nickel foods here and there. Some foods will definitely aggravate my eczema to flare even on dupixent, such as nuts, seeds, canned goods and soy. I am in the process of writing a specific post about my experience.
Warm regards,
Christy
Protopic (Tacrolimus) will make your skin feel like it is burning, but only when one first starts using it. After a day or two, it doesn’t have the burning sensation anymore. I’m sorry that your doctor didn’t warn you about that. Mine did, which made me scared to use it at first. But tacrolimus on my eyelids worked miracles. I will not go back to desonide.
Hi Noah,
Thanks for your comment and sharing. I wish providers and pharmacists were more transparent about the possible side effects of various medications. It seems learning from other patients or advocating for yourself through conducting research is the best way to better navigate what’s best for our health.
Warm regards,
Christy
Hi Christy,
I have recently been diagnosed with cobalt and nickel allergy too, and started searching online. Your website has been a great source for me, thanks so much! You mention the low nickel diet has been very helpful to you and I am trying to create a diet plan for myself as well since this is what my dermatologist recommended. However, I feel like if I go for a low nickel diet, I will miss a lot of the nutritions I should take in a day. I am vegetarian, so some animal products are not an option for me, and most of the things I eat a lot like spinach, lentils, wholegrain products are not permitted. I am having a hard time creating a balanced vegetarian low nickel diet for myself. I am guessing you are not vegetarian, so your process has probably been different than mine, but I was wondering, how did you manage yours when you were deciding what to include in your diet and still get all the necessary nutritions? Did you happen to have any issues as a result of not intaking some of the food with specific vitamins? It would be so great if you could share a week’s menu with us for instance so I can have an idea of how to create my low nickel diet. Or any suggestions you can make?
Thank you,
Selen
Hi Selen,
Thanks for your comment and appreciation for my website. I’m really glad it’s been helpful for you. There are some individuals living with systemic nickel allergies following the low nickel diet that have found ways to continue to eat a vegetarian diet that you can find on Instagram. However as you’ve found, it is very challenging to be a vegetarian on the low nickel diet as the majority of low nickel protein sources are meat, eggs and dairy. I’ve heard from many vegans and vegetarians who felt they had to reintroduce meat in their diet, even if sparingly. I used to be a vegetarian, but I haven’t been since I was a teenager, which was about 8 years before my systemic nickel allergy diagnosis. Yes it can be challenging to feel like eating a low nickel diet can be robust and “healthy” since some of the foods, especially the lack of whole wheat, leafy greens, nuts, seeds, and oats, are all higher in nickel. The longer I’ve been on the diet the easier it’s been to find ways to try to eat a more balanced diet.
Some vegetarians with systemic nickel allergies rely heavily on quinoa, which I’d recommend rinsing. A point based system, as mentioned in Joanne’s website, could be beneficial for you. She also has an app called the nickel navigator. Her data does show different types of lettuce – generally lighter green options that are lower in nickel that could work.
Warm regards,
Christy
Hi Christy,
I’m not sure if you are still interested in hearing about Dupixent and I fear my response might be too long winded. The abridged version is that after over a year of trying to get insurance approval, I was able to get it free for a year. The first six months offered significant relief when i had been through an extended rough patch. (No pun intended.) Still, eye irritation and maybe blurrier vision were problems, but not a deal breaker. The “honeymoon” ended around 9 months in, but it still seemed better than the alternative. At the end of the year, I was denied coverage, and spent six months working out how to get samples from dermatologists and became increasingly stressed about not having Dupixent. It was mental and physical torture. Truthfully, it was for the best when I opted to give up on it. In those months winding down, it wasn’t just not really working that well, but I had issues I’d never had even at my worst before: constant chills, nerve pain, and I couldn’t bathe without turning bright red and blotchy all over, the effects would linger for days. My face and neck were always flushed., I would get these bursts of crazy itching in the night. I felt slightly under the weather. And the zingers just lasted and lasted. Admittedly, after Dupixent, I took it further, and just kind of stopped using cortisones and even moisturizers altogether for a few months. I just wanted to give my body a break after years of skin thinning creams, cyclosporine, prednisone, antibiotics and all that. And I can only say that while my skin never really got fully better, it didn’t get worse. The effects I started getting on Dupixent, however, waned. After about 9 months of not being able to bathe in a some normal fashion, I can take baths now, and even shower in luke warm temps. I don’t get the chills all the time, just when I’m having a bad flare. I don’t need to use eye drops. As for my blurrier vision, I am now over fifty, so older age might be a more likely culprit. I have returned to using cortisone when it gets really bad, but I’d really like not to depend on that. Reaching a dead end with Dupixent gave me odd closure. I now go to dermatologists not with a goal for a cure, but to get closer to finding some of the causes. I take my experiences with dermatologists with a hefty grain of salt, but I don’t feel angry about it so much anymore. It can be a slightly dysfunctional relationship, but I like to think good things can come from it.
Hi Rachel,
Thank you for your comment and sharing both your story with dupixent and journey healing. Living with nickel allergies and eczema can be really challenging, let alone dealing with new prescriptions, their side effects and providers. It’s helpful to learn about various individual experiences, so again thank you. It’s wonderful to hear that you’re in a better place now and that you identified and did what was best for you in those moments, even though it sounds like there were times that were really tough. Relieved to hear you’re on the other side and have found peace and acceptance. I completely related to that part of your story.
Warm regards,
Christy