AAFA Urges Inclusion of Patient Voice in Analysis of Costly New Asthma Drugs
AAFA Community Services
Advocating for Patients
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Blog Post CommentI was just wondering if anyone has any knowledge or experience with Dupixent and Dyshidrotic Eczema? I have had it for almost 2 years now. I have tried everything I know to do, as well as Rx creams from my Dr., and nothing helps...not even a little. The skin on my hands (back, front, sides, all fingers- sides, top, bottom) is so thick and itches so bad all the time. The only way I can relieve the itching is by popping the blisters. I'm about to go insane. I don't know what to do. The subject...
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Blog Post CommentWelcome One Woman. I don't know that it has been approved for dyshidrotic eczema, but it's worth talking to the doctor. Have you figured out any triggers that make it worse?
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Blog Post Comment@OneWoman What did your doctor have to say about Dupixent?
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Blog Post Comment@Jen would you know I had an appt with her last week, and I completely spaced this med out. I did talk to her about my eczema, and she did prescribe me a steroid cream (again), but, I forgot to ask about Dupixent. Rats! Not sure when I'll be going in to see her again, either...
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Blog Post CommentDo you feel like the steroid cream is helping?
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Blog Post CommentThank you for sharing your experience. My 10 year old is going to be starting Xolair very soon, we finally got the approval from our insurance. I’m hoping this is just what she needs. She has been hospitalized so many times and is constantly absent from school because of her asthma not to mention all the steroids she’s taken. We’ve tried so many different preventative medications and it just isn’t enough. I hope all goes well and there aren’t any side effects the possibility of that is...
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Blog Post CommentWelcome, SGP8136! I am hoping that your daughter will do well on the Xolair and will see improvements! Please know that you guys aren't alone as you go along ... you'll find plenty of support on AAFA's Asthma Support Community .
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Blog Post Comment❤️Jade just started her first round of Xolair Injections this past week. She's SO brave! But...I have to admit...It was a bittersweet moment; watching her sit there, calm, asking the nurse to count slowly for her, watching the needle, as she was given both injections. Outside of respectfully saying that it "kind of hurt, a lot", she didn't complain, or cry, or move, or refuse, or scream...she just sat still and watched! As a mom, this was a like a dream come true...at first. [{Sidebar} At this...
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Blog Post Comment@JadesJourney That is great that Jade is so brave during those shots. We have other members who have been on xolair as well and have discussed their experiences on our support forums.
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Blog Post CommentI totally get what you're saying here, @JadesJourney ... fingers crossed that these shots will give her some control over her asthma that has been lacking! WTG on you helping guide her so that she CAN ask those "big girl" questions about the medications she's on. Hang tight, Mama!
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Blog Post Comment@JadesJourney How are things going with the Xolair?
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Blog Post CommentInteresting
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Blog Post CommentIf you are currently on Xolair or considering it, what are your thoughts about self injections? Excited that this will make things more convenient? Apprehensive about doing the shots at home instead of a clinic? Join the discussion !
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Blog Post Comment☝️I've been on Xolair injections for 8 months now, and we're doubling my dose since my IgE levels are still very high. Even though the FDA has approved injecting at home, my physician's office is still apprehensive about allowing me to inject at home. I have Epi pens and I'm ready to make the switch. It will save me an hour round trip, and $65 per injection. Is it typical for doctor's offices to be nervous about switching?
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Blog Post CommentAfter having asthma literally since the day I was born, having it uncontrolled for 33 years and after having been put on a ventilator and having my heart stop for 7 minutes with my last attack my Dr put me on Nucala and to say it has been life changing is completely true. I was using two inhalers in a month and now I have had the same inhaler for about 6 months. I hardly ever have to use it anymore. I am so beyond thankful for the advancements they have made with asthma. There has not been...
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Blog Post CommentWhat is the appropriate course one can do to care for asthmatics On Thu, May 19, 2022, 19:51 Asthma and Allergy Foundation of America < support@aafa.org> wrote:
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Blog Post Comment❤️Wow, Mary, thanks for sharing your experience with Nucala. That's a dramatic and wonderful change!
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Blog Post CommentWelcome, @dama . We're glad you found us with your questions. AAFA Offers Free Online Course for Severe Asthma is a place to start, Sign up to take the course at aafa.org/severeasthmacare . If you would like to learn about the basics of managing asthma first, take our ASTHMA Care for Adults course . Some shorter resources are Asthma Diagnosis and developing your Action Plan . Is this a course for you personally or for those you care for? Please post a question in the Asthma Support...
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SurveyHave you or someone in your family had trouble accessing one of these asthma biologics?If yes, what have the challenges been? -
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Blog Post CommentSevere eosinophilic asthma which level of eosinophil percent and IgE levels to be considered the type of biological agents given