Out of gas

[Madbiker1]

Started on dupilimab a month ago. Mepo, Benra and Omalizumab didn't work well enough to get me off steroids.I reckon I have had 60+ courses of steroids in the last eight years. My condition has robbed me of the ability to do what I used to do - hobbies are a distant memory. I work and sleep. From the moment I get up all I think about is going back to sleep.

After my last injection I developed a cough - I put it down to rhinitis however a small part of me wondered if it was the dupilimab - I had the jab late afternoon and by the early hours I was coughing - a lot ( I was on nights). I don't generally cough with my asthma but I wheeze a lot.

I had my duplimab yesterday - once again by the early hours I was coughing so much I had to sleep downstairs. I felt like I had a house brick lodged in my windpipe.

The fact this has happened exactly the same as before means I cannot carry on with it.

My GP relented and gave me a course of steriods - my god how I need them. Another course.

Have you ever run out of petrol ( or diesel)? Because you have chanced it?

You marvel at how your car still runs but the gauge shows empty.

Then you get the misfire - the stutter - the loss of a cylinder - and you quickly realise you are not going to make it home.

I have been running on empty for some time. But now I have the misfire.

And I know i'm not going to get home.

[fraid]

Heartfelt and almost poetic analogy. Sounds like you need to get back to your doc and demand a better system that actually helps you. Hope you get some more useful treatment. Best wishes. 🤞

[hilary39]

I feel like I am an old broken-down car ALL the time! I have used that metaphor to think about myself too. (And the problem is we are stuck in these lemon cars for life

I think it could definitely be the Dupimilab. I switched to it in December after being on Xolair for four years and it really exacerbated my asthma--apparently, this happens in a fair number of patients. I was SO short of breath for about six weeks just with my two injections. It was quite scary and I had to go on prednisone too. I couldn't even go on a short walk with my son.

It finally left my system and I'm doing better.

I hope you find some relief and I'm so sorry to hear none of these biologics has been the right fit. That must be so frustrating.

[Madbiker1 in reply to hilary39]

Deffo the dupilimab.Horrendous sneezing followed by me being unable to breathe without my inhaler - my asthma was never like this before. My skin itches as well.

My body obviously doesn't like it. And I do not appear to be unique.

I have my specialist know. They should have had a meeting today - I will know more tomorrow.

[hilary39 in reply to Madbiker1]

I’m so sorry and I really empathize! The skin stuff is weird. My facial skin looked radiant when I was on it and now it’s peeling and I have rosacea all over my face and eczema on my hands. It is a potent drug for sure! I had to go on prednisone til it wore off. My asthma was so bad. Like I said in previous posts it was finally out of my system about six weeks after the final shot. Take good care and keep us posted.