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Nucala

My allergist is trying to get my insurance to approve Nucala for my uncontrolled severe asthma. Anyone have experience with Nucala?

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  • Kathy P

    Welcome Dolphin 48. There are several members taking biologics and I'm sure they will pop in with their experience.

  • K8sMom2002

    Hi, Dophin48! We definitely do have at least one member who has experience with Nucala (she writes about it briefly and , and another who is taking . 

    Hopefully they will see your posted question and hop on! If not, I'll keep an eye out and flag them down for you. 

    What other meds are you on to help manage your asthma? What sort of asthma do you have? 

  • Jen

    Hi dolphin48,

    Welcome to AAFA's asthma support forum.  How long have you been managing asthma?

  • Dolphin48

    Thank you for the warm welcome. ��

    I have had asthma and environmental allergies since childhood, I'm getting ready to turn 49. �� My asthma was well controlled until October 2016. I took Advair and Ventolin for years, no issues. I tried immunotherapy for 3 years with little improvement.

    I've been on prednisone multiple times since October. We've tried Dulera,  Arnuity Ellipta, Symbicort, Asmanex, and now I'm on Advair 500/5. I use DuoNeb and albuterol nebulizer treatments too.

    My allergist suggested trying Zolair or Nucala. We are trying to get insurance approval to try the Nucala. 

  • K8sMom2002

    Hugs on the frustrating path you've taken recently … when do you expect to hear back from your insurance? What are some of your triggers?

  • GigiGibson

    I take xolair. I'm up for my sixth shot as soon as I am a bit more stable. I had hair loss, nausea,very transient, and bone aches. Those seemed to subside after three or so shots. I do think I am benefiting but literature to support that is lacking. I found any folks on chat lists who have been on it for years say it is a God send and that you have to go over six months to really see it. Hence, I will continue. December and January were my best months since diagnosed last March. So, I want to see it through 12 then decide if to continue.

    i wish I the best with it! If I can help with anything let me know.

  • Dolphin48

    Thank you so much for sharing your experience with me. I appreciate it!

    Hoping I can get good results. Trying to get approved for Nucala. My asthma has been controlled for 30 years. We are not sure what is going on. I'm close to menopause age and they said sometimes your hormones fluctuating can cause asthma flares.

  • Dolphin48

    I'm hoping the insurance approval will be quick. The Dr. said maybe a few weeks, it varies by insurance. 

    I'm allergic to dust, pollen, ragweed, dogs, cats, horses. I have a Bichon Frise. She is 10 years old. She has never caused me any issues but the allergist believes she may be now. I love her dearly and she helps me with my anxiety. She is groomed and well taken care of. 

  • GigiGibson

    Hi dolphin, yes, I was 46 at onset and feel it was likely perimenopause too. Allergies forever, asthma I can track back to two or more years ago with cough variant and exercise induced. 

  • Shea

    Hi Dolphin. I stared Nucala about 4 months ago. I have a disease called churg-strauss syndrome and allergic asthma is one component of it, although it also causes vasculitis, skin problems, and was responsible for giving me a heart attack (due to my heart being surrounded by eosinophils) back in 2012 (I was diagnosed with Churg Strauss Syndrome at that time, in 2012, after a worsening of allergy, and the development of asthma in my late 20s, and was lucky to survive the heart attack). It was at that point that I took a much stronger stance in avoiding allergens and actively advocating for my health. My allergies also include cat and dog dander, and although I previously could live with dogs, after the diagnosis my family and I had to find a home for our aging west highland terrier (he is now passed on, but he lived with another relative in his old age, and was able to adjust, but I understand it is difficult, I just had gotten much worse allergic asthma and had to prioritize my health.) I am also a single mother of a now 5 year old, so I have gotta get healthy and stay well for him as well as for myself. Anyways, I now live on my own with my son and we have 2 leopard geckos and two ornate uromastyx lizards and they are fun and neither of us are allergic to them at all. But, back to the nucala. My labs showed improvement after 3 months. Prior to starting it, I had consistently high eosinophil levels and a year on xolair did not help me. So when Nucala got approved for use for asthma, my immunologist and labs git me approved with Humana Medicare insurance. This past month (month 4) my eosinophil levels were at a normal level, so that is huge for me. I am hoping I will be able to lower the prednisone soon (I have not been able to get below a maintence dose of 20mgs in 6 years, and have had many flare doses, but less flares since I started nucala). I have not had any major side effects from the nucala that I know of. I do experience higher fatigue than normal the day of the shot and a few days after.

    I am still highly sensitive to dander and dust and mold, so I practice avoidance, and follow all recommendations, as well as eat a low inflammation diet.

    Eosinophils prouce a longer inflammatory response to allergens, and nucala acts directly on eosinophils, so I am very hopeful this medication is the "one" that is going to help me manage my asthma, and churg strauss syndrone, and get me off prednisone.

    If you get approved, you can look into the PAN foundation and Gateway to Nucala for extra financial assistance (I have help from the PAN Foundation currently, very easy quick online application process). I wish you the best of luck and will pop in the forum to give updates, and to see if you have any questions for me. 

  • Dolphin48

    Thank you Shea. I'm so happy to hear you are getting results from the Nucala. Praying you continue to improve. I'm learning so much from all of you. 

    Can you please share a little about your anti inflammatory diet?

    Thanks!

    Beth 

  • Shea

    My anti-inflammation diet is mostly pieced from what I have read over the years ( summarized here: ), as well taking my and my son's food allergies (nuts, apples, grapes, sulfite-sensitive) and my son's allergies (nuts, soy, honeydew melons) into account as well as my sensitive digestion.

    Breakfast: I use organic creamer in my coffee or lactose-free organic milk, and raw sugar; I eat either oatmeal or an organic oat cereal with rice milk; sunbutter jelly, or sunbutter honey toast is another option. We use bread with no soy in it and little to no preservatives, such as Martin's potato bread.

    Snack: Fresh fruits (for fruits with thin skins that you consume I always buy organic (such as blueberries and strawberries), and for fruits with thicker skins I buy regular (such as grapefruits, pineapples, and oranges). My 5 year old son loves del montes prepackaged mandarin oranges, the no sugar added one.

    Lunch: low-sodium turkey breast, applegate yogurt cheese (it is lactose-free and has probiotics in it and is high quality), on whole wheat organic crackers or toast. Organic vegetables such as carrots, bell peppers, tomatoes, spinach. I alternate that lunch with and egg omelet or farmers egg wrap, or leftover chicken in a pita (we buy soy-free pita pockets). My son likes hard-boiled eggs, mozzarella cheese sticks, fruit or veggies).

    Beverages: We try to stick to water, but occasionally have lemonade, chocolate milk (lactose-free), or Reed's Gingerale (made with lots of real fresh ginger).

    Dinner: If I am cooking anything high temperature, I use highly refined sunflower oil or avocado oil as they are good high heat oils. Some oils, like extra virgin olive oil, are really not good to cook at high temperatures and break down and release toxins in those temperatures, and should only be used for low heat sautéing or cold for salads and bread dips.  Coconut oil is good at 350, but if you are cooking higher than that then highly refined sunflower oil is my choice.

    I mostly eat chicken as a meat. Red meat, I have read, is inflammatory and should not be consumed more than once a week. I eat it even less often. It is either chicken, or turkey tenderloin. I typically get organic fresh chicken. My son loves Nature-Raised gluten-free frozen chicken nuggets. And, I use fresh vegetables and fruits, often trying to include avacados, ginger, garlic, onions, an a leafy green such as spinach, kale, escarole, asparagus…. I tell my son we try to eat every color of the rainbow every day. He loves raw bell peppers and cucumbers. I eat pasta once a week, they say to cook it al dente and have small portions, aiming for gluten-free or whole grain options. I try to have a day or two a week with vegetarian meals, so on those nights I will often make pasta or quinoa. I do not use a lot of cheese, but I do not eliminate dairy (some say too much dairy is inflammatory and mucous-producing) but I use it because it balances acidic dishes and beverages, so I just buy high quality dairy and use it sparingly. (Some people add fish as well, like salmon is supposed to be a good anti-inflammatory because it is high in omega 3s. I am sensitive to seafood, and have had negative reactions to shrimp and fish in the past so I avoid it.) 

    Desserts: I do not buy things like hostess cupcakes or highly sugared snacks. I do however occasionally bake cookies or keep small gluten-free cookies around, as well as dark chocolate. Dessert is part of life, and I do no want to live without it. One "bad" food a day, and by bad food I mean: 2 cookies, or fries as a side, or a brownie, or a bowl of ice cream. But no more than that! When I bake, I use good quality ingredients, aim for gluten-free and dark chocolate, and do not use margarine (I use butter, raw sugar, organic eggs, etc).

    Eating out: I cook mostly at home because it is way more economical, and easier for me to eat high quality ingredients and not have to worry about my and my son's allergies as much. When we eat out, we bring our allergy bags with us (epi-pen, Benadryl, allergy action plan), I often check the restaurant's menu online or call ahead to find an option and make sure it does not have our allergens in it. Or I go places where I know what we can eat and what we like.

    And that is my anti-inflammation diet.

  • K8sMom2002

    Beth, I'm so hopeful that the Nucala will be approved quickly and that it will help you! 

    Gigi and Shea have come through huge battles with their asthma, so they know where you're coming from, and they always have really great tips.

    Shea, that menu sounds delicious! Your doctor worked with you, if I recall correctly, right? 

  • Dolphin48

    Wow! Thank you so much Shea! So much helpful information.

    I have a lot to learn and you all have helped me tremendously.

    My Dr. just added Tudorza to meds. Any experience with it?

  • K8sMom2002

    I'm glad we could help!

    I'm not familiar with Tudorza. Isn't that a newish drug that's being used for COPD? What did your doctor tell you about why he prescribed it? I'm curious because if it is helpful for you, it's something else that other members might ask their doctors about. 

    I really hope it helps!

  • Shea

    Lol, sorry that was probably a lot of information. I hope its helpful!

    No, I have never heard of Tudorza. 

    And Cynthia, the diet was not through my doctors. My primary doctor will run labs and tests to tell me if I am low in anything and recommend vitamins (calcium, magnesium, and vit d for longterm prednisone to help prevent bone loss) and iron (because I was low in iron on my blood test) and b vitamins for fatigue. But as for diet, you really need to see a nutritionist and allergist if you want someone professional to play an active role in coming up with a meal plan. I di see an allergist and have been tested for food allergens, but most I learned from experience and tested to confirm and get epi-pens and avoidance advice. I used to work with a nutrtionist regularly when I wirked at a wellness center, and she recommended mediterranean diet, which fruits and veggies to make sure to get organic, and probiotics to most if our clients, and so that is how I got my start, but since then I have been researching and trying approaches that work with me and my little one just on my own and with food journaling/trial and error.

  • K8sMom2002

    Suggesting a nutritionist is always a great idea, Shea! That reminds me that over on KFA, they have a link about . 

  • Dolphin48

    My allergist added the tudorza pressair because I keep producing mucus. He said it may help with that. He gave me a sample of it to try. He also gave me a script for prednisone but asked me to try getting by with albuterol in the nebulizer or use my inhaler. He said you can't use DuoNeb and Tudorza Pressair because they have a common ingredient. He said I could take the prednisone it if I felt I needed it but I have almost become dependent on it.   He put me back on Advair last Thursday and stopped Dulera and Arnuity Ellipta.

    Thank you Shea for the tip about seeing a nutritionist. : )

  • K8sMom2002

    Ah, bad ol' mucus, how I love to hate it.

    It sounds like he was very thorough in going over all the med changes — that's great! 

    One thing I try to remember to get the doctor to do is to check mine and my DD's inhaler technique. Does your inhaler require a spacer? It really can make a difference in the meds getting down into the lungs. 

  • Kathy P
    Dolphin48 posted:

    My asthma has been controlled for 30 years. We are not sure what is going on. I'm close to menopause age and they said sometimes your hormones fluctuating can cause asthma flares.

    , such as menopause or pregnancy, can impact allergies or be an asthma trigger. Allergies can get better, worse or stay the same. My allergies changed with each pregnancy and now seem to have gotten much worth through perimenopause. Oh joy!

  • Dolphin48

    Yes, it seems to be helping. Today was my 4th day. I'm feeling a little better and not using my rescue inhaler as much. I also started the Advair 500 one week ago, hoping this is the right combination. 

    Still waiting to hear if insurance will pay for the Nucala. Keeping my fingers crossed. 

    Thank you for checking on me. 

  • Jen

    That's great to hear.  When do you expect to hear from your insurance company?

  • Dolphin48

    Anyone else have asthma flares when the outside temperature drops?

    I feel worse today with the cold and windy conditions. 

    I cover my mouth and nose when outside but the cold air really effects me.

  • K8sMom2002

    Dolphin, I do … Especially if I'm doing anything strenuous.  It's not just when it drops, but also when it swings wildly in any direction. Covering your mouth and nose is a good idea!

    I talked about it with my doctor, and she said to treat it like you would any potential trigger, and to follow my asthma plan. If I were you, I'd mention it to your doc and see if there's any tweaking that needs to be done to your plan.

    AAFA has a …

    Glad to hear that the new med is working, and fingers crossed for a speedy approval from your insurance!

  • Dolphin48

    Thank you for the information!

    I'm in Ohio so the weather changes frequently. It is 29 degrees but feels like 17 with the windchill.

     

  • Shea

    My primary care doctor says I do not have CF-type symptoms of excess mucous with my churg-strauss asthma, so no to the tudorza. I guess its just now I am feeling like stuff is heavy in my chest and lungs because I am sick with a cold, but I am still not too mucousy sounding to her (I think its from taking mucinex and steam showers and nebulizing, and going up on prednisone, I have cleared my lungs up a lot.) My doctor says that the cold (the sickness cold, not the weather cold) probably inflamed my airways and constricted them and more eosinophils are on the tissues from that so that is why I feel tightness and pain and difficulty breathing.

    When the weather is cold and dry it can be irritating on airways. I think honey is a good coater and throat protectant… extra fluids … oily foods, omega 3 fish oil supplements (if you arent allergic to fish) .. steam showers. And wearing a mask or scarf helps cut the cold air and keep warmth and moistness. It is funny because during the humid time in Florida summer I find it difficult to breathe, but during dry cold days, I need extra humidity. I guess its all a balance. 

  • Dolphin48

    I hope you feel better Shea. Thank you for responding. I like mucinex too. Have you ever used CapMist? It's like Mucinex but seems to work better for me when I have a cold. It is a prescription drug.

  • Kathy P

    Cold air, especially dry air, can be a trigger. 

    Hadn't heard of Capmist, but it looks like a comb med with guaif, Sudafed, and dextromathorphan. 

    Hope you are feeling better Shea. 

    Dolphin, is the Advair still doing the trick? I just got switched to Verify which is similar, but only once a day. It seems to be loosening things up! 

  • Dolphin48

    Hi Kathy,

    I'be never heard of Verify. I will look that up. Is it a new medication?

    The Advair and Tudorza Pressair are helping. I'm doing better but Thursday and Friday's cold snap set me back. Breathing better today.

    Still no word from insurance about Nucala.

    Have a good evening.

    Beth

     

  • Kathy P

    Um missed that typo! Stupid phone! I got switched to Breo. Same meds but longer acting. 

  • K8sMom2002

    Did any of you guys see the new blog post about Nucala? It was a press release about results from a study.

    GlaxoSmithKline plc (LSE/NYSE:GSK) today announced data demonstrating that severe asthma patients, whose disease is driven by eosinophilic inflammation, treated with first-in-class biologic Nucala® (mepolizumab) added-on to standard of care, achieved clinically and statistically significant improvements in their health-related quality of life and lung function …

  • K8sMom2002

    Beth, any word from your insurance company on the Nucala approval? Fingers crossed that it helps!

  • Dolphin48

    Thank you for sharing the press release about Nucala. 

    Still waiting to hear if insurance will pay. Thank you for your support,  I so appreciate it!

    Beth

  • K8sMom2002

    Oh, I do hope you can get approval to at least try it! Have you tried calling your insurance company directly? Or can you nudge your doctor's office staff to call on your behalf? It stinks that you're having to wait.

  • Dolphin48

    Hi,

    i talked to the nurse at my allergist's office today. They faxed more information to the insurance this morning. Trying to wait patiently.

     

  • Jen

    I hope there's not too much more back and forth between the allergist and the insurance company.  Hang in there!

  • K8sMom2002

    Oh, fingers crossed! Do you know what sort of additional documentation they were looking for? 

    Tell you what … since you're trying to wait patiently, I'll fidget on your behalf.

  • Jen

    @Dolphin48 - How goes the wait?  I hope you've heard something by now.

  • Dolphin48

    Thank you for checking on me. Still waiting…… 

    Frustrating. Trying to be patient, that is the hard part 

  • K8sMom2002

    Hugs, Dolphin, yep, I'm not too patient myself. Did they give you any indication when you might hear back?

  • Dolphin48

    No,  they said it would take a few weeks. It will be 3 weeks on Thursday.

    We had another cold snap and it always effects my breathing. With the windchill it feels like 10 degrees. Getting impatient. I just want to feel better.

  • K8sMom2002

    Oh, me, too, on the cold! I think that's what happened to me this morning … even though the temp in the house SAYS it's 70, when I got up this AM the air was still cool. It really seemed to kick start a whole host of coughing that would not seem to go away … How do you prevent the cold air from stirring things up further?

    Fingers crossed that you'll get the RIGHT answer very soon.