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Biologics

Davenpos profile image
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Hi.i.have been.on all the biologics including tezelizumab due to.severe eosinophil asthma ..but due to.pheno.always being 200+ the team.have got me on dupixient ..I.have had 2 doses and experiencing a continuous cough can't sleep with it..joi t pain +++

Anyone else with symptoms

Fed up as nothing g seems to.help.aprt from.high daily.pred

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Davenpos profile image
Davenpos
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8 Replies
runcyclexcski profile image
runcyclexcski

Did they have to stop the previous biologic before putting you on Dupi? It might not be the side effect of Dupi per se, but the lack of protection. Maybe they can compare your asthma scores to the previous "better" times and see if it makes sense to keep you on Dupi. Usually they insist on 8 weeks becore deciding on what to do next (switch or keep going) -- unless you are totally desperate.

I was on Xolar for 15 years which was helping, but I was never at 100%. So they switched me to Benra (12 weeks) and then to Dupi (12 weeks) in hope to "make it better". It resulted in having no control at all. Then I went back to Xolair (they offered T to me, but I was tired of all this experimentation). Now I at least can make it through the day w/o having to use the rescue can and the high prednisone. I still cannot leave my flat b.c. of allergies and outdoor heat/pollution, but at least I can work from home where I have my precious AC, my HEPA/carbon-filtered chamber, and my sensors for O₃, particles, RH, T etc. They also have put me on de-sensitization injections for dust and pollen recently (something I've been asking for years).

Jamesd1234 profile image
Jamesd1234 in reply toruncyclexcski

This sounds very difficult to manage but the desensitisation sounds promising for you! I also read about immunotherapy for allergies but that it can be dangerous? And the first dose must be monitored as it would give the strongest reaction. Then after a year or 2 it could give some very strong immunity to allergies. I hope this works for you

runcyclexcski profile image
runcyclexcski in reply toJamesd1234

They started low, then built up in 4 injections. The strongest -- the 4th one -- made my arm swell and made me tired, sort of like a Covid shot. OK otherwise, with antihistamines. They did it before for me the USA for me, but in the UK/EU it's harder to get somehow.

Are you still on these shots?

Jamesd1234 profile image
Jamesd1234 in reply toruncyclexcski

Ahh that’s good that they have done it in a controlled way. I think I might have confused allergy shots with a type of immunotherapy which is a tablet that goes under your tongue. I’ve not had either of these of been offered this yet for my severe allergies but just doing some research. I hope that this is something I could get some day along with biologics to deal with my nightly asthma attacks!

runcyclexcski profile image
runcyclexcski in reply toJamesd1234

I hope you can get some form of immunotherapy in the UK. I never succeded in getting it via the NHS. In the USA, they only offer injections (AFAIK), but in Germany they offer either the tablet form or injections. I chose injections, b.c. they worked in the US. It's a weekly trip to the doctor and waiting before and after the shot. I do not mind, whatever helps me breathe.

Jamesd1234 profile image
Jamesd1234

very sorry to hear this. I have yet to get biologics but have read that they can take a few months to start working properly for some people? So hopefully you start to find some improvements soon and maybe one of the other types doesn’t give side effects

Davenpos profile image
Davenpos

Just an update...stopped duplizimab as have horrendous swelling from.knees down..cough continuous even tho had a burst of 40mg pred for 5 days now back down to my reducing dose of 12 .Extremely concerned now as no double protection when I have been.on pred high doses 15 yrs +

Ecmo ventilated every 6 months on previous biologics to benra ...

Pheno still 200+

So let's wait and see if the swelling.g is Sue to.me reducing pred or I.have another condition

So fed up x

Pipsqueak77 profile image
Pipsqueak77 in reply toDavenpos

Hi

Sounds pretty awful…

How long have you been on Dup? If it’s a reasonably long time then I would say it’s more likely to be the introduction/reduction of the pred.

One of the side effects of pred is fluid retention..?🤷‍♂️

Also I found out recently that in some people / circumstances Dup can actually increase eosinophils thus increasing feNO? Maybe worth investigating? It does not eliminate eosinophils like eg. Benra

Just a few jumbled ideas but might be of interest to you.

Hope it all works out for you 😊🤞

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