Super responder.

[Yogiyogi57]

I've been on biologic injections for 3 years now and it's absolutely changed my life. Just recently I changed over to Dupilumab from Fasenra and as well as curing my eosinaphilic asthma it has now got rid of my nasal polyps so for the first time in probebly 15 years I can smell and taste. I was put on a 3 month trial to see if the new bologic would work and after this finished I got a letter from the nurse saying my case had been discussed in the department and I was classed as a "super responder". I had heard the nurse tell me this but until I saw it in a letter I didn't realise it was an official medical term. Any other super responders out there?

[Homely2 Administrator]

That is great.

[Patk1]

That'd great news.thanks for sharing it x

[Itswonderful]

that's fantastic!

[CallysMum]

Great to hear a success story .

[hilary39]

Good for you! This is a rare and coveted response Many doctors / governments are more closely tracking super responders as it's a way of proving "remission" is possible in asthma as in cancer, rheumatoid arthritis etc. (that's where the term is borrowed from).

The hope is that it will change how biologics and asthma are thought about and make biologics easier for people to access.

Some doctors think patients should be on biologics after even just a few courses of prednisone to prevent people from developing adrenal insufficiency.

[d2read]

I am considered a “Super Responder.” After 5 years on Xolair, with slowly improving allergies, but steadily worsening eosinophilic asthma and substantially worsening HES (hypereosinophilic syndrome) that seemed headed for a rapidly fatal outcome, I was given permission to try Fasenra first injections (375. mg) June 2018 (eos level was 2800) and within 4 days, my blood tests showed ZERO eos! And every month since then my eos level has remained at zero. I haven’t had a single negative side effect. Last e-asthma attack was in 2019, and last regular asthma attack was in 2021. First time since BIRTH (and I’m 67.5 years old).

I still am dealing with myriad repercussions from eos infiltrates throughout my body — that will likely continue throughout my life. But the difference has been radical.

Also, I am one of those people campaigning for dramatic decreases in the years of steroids. My body has been substantially destroyed by decades of use and mis-use and overuse of steroids, initially to treat acute asthma attacks, but increasingly since the 1980s, prophylactically, for everything from minor surgery to acne. Long-term steroid use is always contraindicated simply because our bodies cannot eliminate the active compounds, so they build up, eventually causing steroid toxicity — which is one major underlying problems.

It's always great to meet another unicorn out and about.

Welcome to the herd!

[runcyclexcski in reply to d2read]

Great to hear that Fasenra made a difference for you. I also tried switching from Xolair to Fasenra, and deteriorated within 3 months. I am now back to Xolair, but it does not seem to work as well as it used to. I used to do skiing at 12,000 feet at -20C on Xolair, now can't even handle 3,000 feet and 0C w/o going on prednsone tablets. Not sure what to try next.

[d2read in reply to runcyclexcski]

I didn’t mean to leave the impression that I stopped Xolair — I’m on both of them at the recommendation of Dr Amy Klion, the head of the US National Institutes of Health research programs on eosinophilic diseases. (I am an atypical idiopathic HES patient, hence Dr Klion’s interest in my case.)

It took a number of years of Xolair to get to the point where my severe allergies are largely controlled. But my physicians and I absolutely agree that I cannot afford to go off one or the other, or even to try substituting some new drug. My situation was far too fragile to gamble.

Do you have eosinophilic-asthma or -emphysema? Among the permanent damage done to my lungs (in addition to a lifetime of the most severe asthma and related respiratory diseases) was the development of eosinophilic emphysema. Although I don’t have active attacks the past couple of years, there hasn’t been any improvement in my damaged lungs. I’m just happy they haven’t gotten worse.

Good luck!

[Yogiyogi57 in reply to d2read]

I have eosinaphilic asthma, before my first injection I got to the stage where i couldn't do anything, couldn't wash the car, couldn't bring the wheely bin in and within a couple of weeks there was literaly nothing I couldn't do. I found the longest steepest hill in the area and decided to see how far up I could get and got straight to the top without stopping.

[runcyclexcski in reply to Yogiyogi57]

This is great to hear, Yogi, this story with the hill-climbing. I wish I could find a solution that would allow me to do this. I also like to climb hills, but I have to don a respirator, and recently I also added a heater and a power blower to the respirator. The whole thing weighs 10 kilos and fits in a giant backpack. I hook myself to this machine at home, and this allows me to keep my weight down. Xolair, two steroid inhalers, and ventolin just do not do enough. Maybe I will ask about Dupilumab, too. Funny that these ideas always have to come from the patient (who does her/his own research), not the doctors.

[runcyclexcski in reply to d2read]

d2read -- OK, makes sense! It's great that they are working with you and are trying combinations. It's difficult to convince my docs to do this, b.c. my baseline lung function is 140% of normal (I just was born with big lungs). So, as far as they are concerned, I should not be having any issues at all. I have high eosinophiles at all times (which remained the case throughout Xolair) -- high enough to be marked as "H" on the chart, but not as high as to convince them that the situation is dire.

[Jamesd1234]

Congratulations, this is great to hear. After 7 - 8 years suffering with very bad allergic asthma from last spring to autumn, I am now being referred for a new biologic injection to treat asthma this year. I am praying that it works and helps my symptoms. I have heard there have been positive results