Dupixent for AERD, Update on CCI fusion, EDS and Dystonia
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- เผยแพร่เมื่อ 5 ก.ย. 2024
- Hi! I just started the bi-weekly injection Dupixent as a treatment for Aspirin Exacerbated Respiratory Disease (AERD), also known as Samter's Triad. In this video I share my experience starting this medication, all side effects I'm experiencing as well as provide an update on my other health conditions: Ehlers Danlos Syndrome, Craniocervical Instability Fusion and Dystonia. Please feel free to ask questions about these conditions in the comments and I will answer by sharing my personal experience. I forgot to say in the video that I also developed Alopecia over the last two years and a large spot of hair on the back of my head fell out. With steroid shots every 3 weeks my hair grew back but I can't maintain it without the shots. I experience daily scalp pain (feels like a bruise in different places) and continued hair loss. I'm curious to see if Dupixent helps this as well, I will update you!
#dupixent #AERD #aspirinexacerbatedRespiratoryDisease #SamtersTriad #EDS #dystonia
Fingers crossed that it continues!! I’ve never had my eosinophils checked, but wow, the sinus issues, facial pain, facial swelling, inflammation… yeah, I got that. I’ve been having a lot of success nasal rinsing. It’s been knocking down the inflammation. The ENT I saw recently suspects the rinsing is helping allergies. I’m excited for you!!
You’re doing SOOOO well!! Omg it’s phenomenal to see you in this state. Thanks so much for the update. I found out I’m C1-C5 unstable and need fusion but I’m not ready. I have been researching hard into dystonia because I was seeing that still be the issue even after surgery for some. I was blown away to hear your input on that part. I’ve been trying to dive deep into dopa response dystonia research, hormones and their link to dystonia and also temperature because that’s such a huge trigger for me. Neuro transmitter research has been such a helpful path for me and trying to connect the dots for the dystonia and our circuit boards short circuiting on us. I’ve been pushing my body to the limit trying to study it and figure things out deeper. Thanks so much for your update! It’s just so good to see you and your transformation.
Hi Erin- temperature change is a trigger for me too! Repetition is another thing I've noticed that triggers my dystonia. Another very frustrating symptom I'm experiencing is problems swallowing. This arises from dry food which feel like a mechanical issue, I can sip water to get the food down. But I am also experiencing bouts of the inability to swallow. I don't know if it's from my tongue or esophagus. I'm going to meet w/ my neurologist about it. I hope you are doing well.
Love seeing you like this girl 😍💪🔥
These are some really exciting tangible improvements I hope that this can stay long term improvements for you in that this new medication will help increase your quality of life a lot
Such a fast positive reaction just from one loading dose is very promising.
My daughter age 12 is suffering also with EDS /pots tics, dystonia from waist down-clonazepam relaxes legs but either way she has paralysis waist down. Wheelchair bound. Now struggling with upper body weakness, hard time sitting up straight. Has dystonic storms prior to clonazepam. Have you tried sinemet?
Hey there, I also have AERD and EDS, and you're the first person I've heard of to have both like me! I'm wondering if you've come across any others with this combination. Since they're both rare it seems unlikely to have both unless they are connected somehow, and... I guess I'm just curious! It would be an interesting area to further research if there are a lot more of us.
Hi, yes I have come across another AERD + hEDSer!! just one though. FYI Dupixent has been a game changer for me. I can breath so much better, significantly less congestion and sinus pain and no more wheezing. I hope you are doing well..
How do you feel after getting the fusion? Do you still have those wired feelings in your head after your fusion?
Have you had any joint surgery?
just my spine/neck
What caused the dystonia meds?
my neuro thinks it's from hEDS, a proprioception issue plus constant muscle tension.
How are u today?
regarding dupixent, it helps my lung function significantly and my chronic sinus infections are gone. My dystonia has gotten worse (i don't think it's connected to dupixent). I also have pretty significant atrophy in my hands feet and now calves...so that's frustrating. My hEDS has really affected my spine which is leading to a host of issues.