Losing Your Sense of Smell Is Like Losing Yourself; How I Got Mine Back
There are certain human experiences that are easy to take for granted until they’re gone. I learned this lesson the hard way when after decades of battling consistent sinus issues, I finally lost my sense of smell, and with it, so many parts of my life that previously brought me joy.
Growing up on a farm in Indiana, my childhood memories are linked to experiencing nature with all of my senses. The smell of lilacs or a freshly-mowed lawn can bring me right back there. As an adult, I love cooking (and eating!), tending to my garden, and traveling – all activities that were diminished when I lost the ability to smell. In some ways, it was like losing a part of myself. It wasn’t until I was finally diagnosed with chronic rhinosinusitis with nasal polyposis (CRSwNP) that I realized I had a serious medical condition which opened new treatment options. I learned from my doctor that CRSwNP is a condition that can cause sinus pain, nose stuffiness and loss of smell. Nasal polyps are growths in the nose or sinuses.
My symptoms started when I was about 30. At the time, I just thought I was one of those unlucky people who got sinus infections and colds all the time. I remember being so exhausted at work, I would take naps during the day in the first floor restroom on a dirty couch. It became my normal to constantly be sick, and when you live with something that’s chronic, you kind of just learn to push through. I got into this pattern where I’d develop a sinus infection, get prescribed steroids and antibiotics, maybe feel relief for a month or two, only to have the symptoms come back – and the cycle would start again.
Eventually, though, I stopped experiencing those months of relief and lost my sense of smell completely – which is twofold. Losing my smell affected my sense of taste. Not being able to breathe through my nose affected my sleep and I was tired all the time. I remember calling my doctor and telling him I just couldn’t live like this anymore.
After seeing multiple general practitioners, I finally went to see an ear nose and throat (ENT) specialist at the suggestion of a friend; I wish I had known to do that sooner. After a CT scan, he was able to diagnose me with CRSwNP. I finally had a name for everything I had been experiencing. I never knew they could be tied to a serious condition. But as the ENT said, I had so many nasal polyps growing in my nose, so I decided to undergo surgery to remove them.
Surgery seemed to help at first. For about eight months I could smell again, until an asthma and allergy specialist discovered the nasal polyps were growing back. I learned later this can happen to people with CRSwNP. Luckily for me, the allergy specialist had heard of another treatment option: DUPIXENT® (dupilumab). DUPIXENT® is a prescription medicine used with other medicines for the maintenance treatment of CRSwNP in adults whose disease is not controlled. He spoke to me about the potential benefits and risks of treatment, including the most common side effects such as injection site reactions, and some serious side effects including allergic reactions that can sometimes be severe, eye problems, inflammation of your blood vessels, and joint aches and pain. I was a little nervous because I had never taken a biologic medicine before. But I did some research, learned that biologics are made from living cells, and was so tired of my now worsening symptoms that I decided to give it a try. Two weeks after my first DUPIXENT® shot, I was able to smell again.
Please see below for additional Important Safety Information
I’ll never forget the moment that I noticed my sense of smell was back. At first, I was confused by the sensation. I remember standing in my kitchen on a Saturday morning and not being able to pin-point exactly what felt different about the room. I thought maybe it was the light that had changed. Finally, it hit me that I was actually smelling the coffee I was making. Every morning I made coffee, but this morning I was able to appreciate it after missing it for so long. The feeling was amazing, and now that I’ve been getting my DUPIXENT® shots every other week, I’m starting to feel better enough to get back to some of my favorite hobbies. Additionally, taking DUPIXENT® has reduced my nasal congestion and really helped with my nasal polyps.
It wasn’t until I had my sense of smell back that I truly appreciated what I had lost. I realized how many childhood memories I associate with smell, and that when I couldn’t smell lilacs, I couldn’t feel my mom anymore. Now, I am travelling again, and I’m grateful that I can enjoy food in new places. I’m excited for my future because now I can experience more of what life has to offer: like the aroma and joy of cooking a big meal for people I love, smelling my roses from my driveway, and the scent of my favorite lavender candle filling my home. Of course, with DUPIXENT®, everyone’s results are different, so be sure to consult your doctor about what’s best for you.
Looking back, I wish more people knew about CRSwNP and how greatly it can impact your life. I’ve now talked to so many others living with CRSwNP, and I can’t tell you how many people I talk to who end up in tears because nobody has ever validated the real struggles they’ve experienced. But CRSwNP is a medical condition that can be debilitating. You might not think a little thing in your nose can have such a great impact, but it can. I didn’t realize it as much in the moment but looking back now, I recognize how drastically CRSwNP affected my life. With my nasal polyps under control, I’m looking forward to retirement. My husband and I plan on getting a boat and riding around North America. I can’t wait to inhale the wonderful smells at every port.
IMPORTANT SAFETY INFORMATION & INDICATION
Do not use if you are allergic to dupilumab or to any of the ingredients in DUPIXENT.
Before using DUPIXENT, tell your healthcare provider about all your medical conditions, including if you:
- have eye problems.
- have a parasitic (helminth) infection.
- are scheduled to receive any vaccinations. You should not receive a “live vaccine” right before and during treatment with DUPIXENT.
- are pregnant or plan to become pregnant. It is not known whether DUPIXENT will harm your unborn baby.
- A pregnancy registry for women who take DUPIXENT during pregnancy collects information about the health of you and your baby. To enroll or get more information call 1-877-311-8972 or go to https://mothertobaby.org/ongoing-study/dupixent/.
- are breastfeeding or plan to breastfeed. It is not known whether DUPIXENT passes into your breast milk.
Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins and herbal supplements.
Especially tell your healthcare provider if you are taking oral, topical, or inhaled corticosteroid medicines or if you have CRSwNP and asthma and use an asthma medicine. Do not change or stop your corticosteroid medicine or other asthma medicine without talking to your healthcare provider. This may cause other symptoms that were controlled by the corticosteroid medicine or other asthma medicine to come back.
DUPIXENT can cause serious side effects, including:
- Allergic reactions. DUPIXENT can cause allergic reactions that can sometimes be severe. Stop using DUPIXENT and tell your healthcare provider or get emergency help right away if you get any of the following signs or symptoms: breathing problems or wheezing, swelling of the face, lips, mouth, tongue, or throat, fainting, dizziness, feeling lightheaded, fast pulse, fever, hives, joint pain, general ill feeling, itching, skin rash, swollen lymph nodes, nausea or vomiting, or cramps in your stomach-area.
- Eye problems. Tell your healthcare provider if you have any new or worsening eye problems, including eye pain or changes in vision, such as blurred vision. Your healthcare provider may send you to an ophthalmologist for an eye exam if needed.
- Inflammation of your blood vessels. Rarely, this can happen in people with asthma who receive DUPIXENT. This may happen in people who also take a steroid medicine by mouth that is being stopped or the dose is being lowered. It is not known whether this is caused by DUPIXENT. Tell your healthcare provider right away if you have: rash, chest pain, worsening shortness of breath, or a feeling of pins and needles or numbness of your arms or legs, or persistent fever.
- Joint aches and pain. Some people who use DUPIXENT have had trouble walking or moving due to their joint symptoms, and in some cases needed to be hospitalized. Tell your healthcare provider about any new or worsening joint symptoms. Your healthcare provider may stop DUPIXENT if you develop joint symptoms.
The most common side effects in patients with chronic rhinosinusitis with nasal polyposis include injection site reactions, eye and eyelid inflammation, including redness, swelling, and itching, sometimes with blurred vision, high count of a certain white blood cell (eosinophilia), trouble sleeping (insomnia), toothache, gastritis and joint pain (arthralgia).
Tell your healthcare provider if you have any side effect that bothers you or that does not go away. These are not all the possible side effects of DUPIXENT. Call your doctor for medical advice about side effects. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.
Use DUPIXENT exactly as prescribed by your healthcare provider. It’s an injection given under the skin (subcutaneous injection). Your healthcare provider will decide if you or your caregiver can inject DUPIXENT. Do not try to prepare and inject DUPIXENT until you or your caregiver have been trained by your healthcare provider.
DUPIXENT is a prescription medicine used with other medicines for the maintenance treatment of chronic rhinosinusitis with nasal polyposis (CRSwNP) in adults whose disease is not controlled. It is not known if DUPIXENT is safe and effective in children with chronic rhinosinusitis with nasal polyposis under 18 years of age.
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