dupixent

[dicof]

My doctor has just suggested I start dupixent and having only found posts from people who’ve not got on with it- is there anyone out there who is on it and pleased with how it’s working?

[Hanchard_85]

Hi

I’m going to be starting on Dupixent shortly. What problems have you had with it?

Thank you

[dicof in reply to Hanchard_85]

Thanks so much x

[dicof in reply to Hanchard_85]

I’ve not started it yet. Just asking to see if anyone has and whether it’s working well and side effects ok.

[Jjude1003]

I’ve been on it for over a year and haven’t had any problems.

[dicof in reply to Jjude1003]

And has it really helped a lot?

[Jjude1003]

My eosinophils were not very high to begin with but my doctor still suggested we try it. I had bronchial thermoplasty procedures, added Dupixent and switched from Symbicort/Spiriva to Breztri all within about six months so not totally sure exactly which one helped the most but all I know is I’m doing MUCH better now than ever.

[dicof in reply to Jjude1003]

Well that’s great news. But I’m not surprised you’re not sure what to attribute it to! I’m on such high doses of inhaled steroid I’m effectively on oral steroids. My eosinophils are also not v high but I fit the criteria for dupixent and as my blood sugar is borderline and eye pressure is high they want to get me off one of the steroid inhalers. It’s hard because im actually well controlled on what im on( except 4 flares last winter) so I don’t want to be on a drug that is more of a problem to take, travel with etc off if it’s giving me even more side effects. Isn’t asthma complicated!

And thanks for your help.

[Hanchard_85 in reply to Jjude1003]

I’ve been on a 12 month trial of Benralizimab, and take Hydrocortisone along with Spiriva & Revlar inhalers.

Hoping Dupixent will help 🙏🏼

Thank you

[dicof in reply to Hanchard_85]

Good luck with dupixent 🤞

[Hanchard_85 in reply to dicof]

Thank you 😊 take care

[Jjude1003]

Yes its so complicated! I use the pen version of Dupixent. I believe it can be out of the refrigeration for a week or two prior to using so it's not really a problem with traveling for me. Good luck!

[dicof]

thanks again- that’s really helpful. I fly to New Zealand to see my daughter and it’s good to know it doesn’t have to refrigerated all through the 27 hour journey!!

[Singinglouder in reply to dicof]

If you do need to keep it chilled, you can buy travel pouches specifically for keeping meds at fridge temperatures - I found them when I was looking for storage for my insulin. That’s still usable 60 days at room temperature, so I didn’t need the fridge ones, just coolers, so no details I’m afraid - I just know they exist, and are more expensive the longer you want to keep things chilled…

[dicof in reply to Singinglouder]

Thanks very much for that-I’ll look for them on line if I need one

[Yogiyogi57]

Been on Dupixent for 3 weeks now, changed over from Benralizumab which was an absolute life changer for me for the asthma side of things but I get nasel polyps regularly and this is shrinking them. I can now breathe out of my nose and swallow food properly so very pleased with it so far. Sense of smell not returned yet but still hopeful it might. Not smelt anything for over 10 years so no rush! No side effects yet.

[dicof in reply to Yogiyogi57]

Wow that sounds fantastic. I don’t get polyps but I would love to experience an unblocked nose too ! Let’s hope it helps your asthma as much as the Benralizumab did 🤞

[Subicbay]

For many years, I have been suffering from chronic sinus infection, eczema and asthma due to environmental allergies. I have been on Dupixent for over 2 years. Dupixent got rid of nasal polyps and my asthma was under control. But for the past 6-8 months, I have experienced severe headache, blurry vision and joint pain. One of the side effects of Dupixent is Blepharitis, headache and joint pain. My rheumatologist told me to stop Dupixent until farther notice just to see if my condition improve. It did. My headache had calm down. I'm on ocusoft for Blepharitis and Xiidra for dry eyes which i believed are side effects of Dupixent. My allergist is switching my med from Dupixent to Nucala. My concern is Nucala may have the same side effects as Dupixent. I'm undecided whether to take Nucala my concern is the side effects that I had experienced with Dupixent.

Does anyone in this forum have the same experience? Thanks.

[Poobah in reply to Subicbay]

There's no way to predict how you're going to react to Nucala. For some, it works extremely well in controlling nasal polyps and asthma. For a % of patients, it works well but there are side effects. Then it doesn't work at all for some.

I've read many posts on a Facebook group for Samters (AERD) about various biologics and there doesn't appear to be a stand out treatment that works for everyone without side effects. Some have done well on Dupixent but side effects mean they've had to try Nucala, with success. It's only by trying that you'll know.

Others have also tried Xolair and Fasenra. I'm unsure if these are available in the UK.

I'm very fortunate that Montelukast worked in respect of my nasal polyps.