Fasenra

[Olliebms]

Hi I'm new to the group have suffered with brittle asthma for many years and hospitalised in numerous occasions . Went hospital yesterday and consultant has discussed putting me on fasenra injection . Just wondered has anyone recently started on it and has it helped you . Thankyou !

[Ynnam30]

My doctor is also putting me on Fasenra. She said it is due to the type of asthma I have. I am only in control while I am on oral steroids. Hopefully it will help.

[d2read]

I have hypereosinophilic syndrome (HES) as well as the most severe form of asthma, which is not been controllable the past 7 years. It turns out I have developed eosinophilic asthma (and now also e-emphysema, with permanent lung damage). Because of severe damage from all the steroids over the years, staying on steroids is not an option for me (they are now toxic).

My 1 year anniversary on Fasenra is next week. It has changed my life for the better in ways I had no longer believed possible. It isn't a cure, and there are substantial risks that go along with it, but from the FIRST injection last June, my eosinophil level in my blood went from 50% (extraordinarily high) to ZERO, and it has stayed there! I have felt slightly better every single day.

No asthma attacks since then, but it hasn't been an immediate improvement. It took about 6 months of steady improvement before I realized just how much of a difference it was making. For example, for 6 years I've been in physical therapy, which has been vital to keep me from being bed-bound. My therapist monitored my strength, endurance and balance constantly. Although I was getting better a bit faster than normal for me after being off steroids, by January it was marked. It was so much better that last month they decided to let me have a summer vacation from PT -- just do my exercises on my own.

I remind my doctors, my family and my friends all the time about it this way:

If something happens to me today -- a sudden anaphylaxis that's fatal that's possible from the Fasenra, or I am run over by a bus, Fasenra still will have given me a year that I had given up any hope of having again.

I wake up in the mornings, looking forward to what the day may bring, and not dreading the pain and tests and constant spiraling downward that had been my life. I'm taking an art class -- for fun! I'm writing again! I can contemplate possibly getting strong enough to work part-time. I may be able to dance at my goddaughter's wedding in November.

So if something happens and it all ends today, I will be immeasurably grateful -- for a drug that has given me some ability to enjoy aspects of my life again. It can't cure me. It can't reverse the damage done. Some of my other medical problems have eased somewhat as the eos has gone down -- but they are still there to be addressed. But each day is a gift and I cannot put into words just how grateful I am to the researchers and the drug company (and the broken US healthcare system that still managed to pay for it).

If you have eosinophilia, I would say try it -- it eliminates the eos in the blood, without affecting the underlying ability of the bone marrow to produce them, in case they are ever needed. But consider carefully the risks and benefits. It's not like taking aspirin -- this is a last-ditch drug.

Good luck!

[Chopper05 in reply to d2read]

That's great

I have had only 2 injections so far with no relief. Struggling to stay positive

[d2read in reply to Chopper05]

I met NIH’s Dr Amy Klion at a eosinophil conference two weeks ago (she’s the one who finally diagnosed me with atypical HES, after so many years). She was thrilled with my progress, but said the hardest thing about the biologics now is that she’ll have a couple of patients like me who will have miraculous results (but there’s no telling for how long); and a handful who will have some improvement, but with side effects that may be serious. Then another handful will have very serious side effects from the first injection - possibly life threatening. And yet another handful will have no reaction at all.

She said so far they can’t tease out who will make the great result category, much less the others. And that it’s extremely frustrating.

She said they know ultimately this will be where the answers will be. But we are very early in the search, and there’s a long, long way to go.

I wish there was better news. I had hoped it was a miracle for us all. (I had HES, we think, for more than 15 years by the time it was finally diagnosed. And it has infiltrated my lungs, killing some cells — resulting in Stage II

eosinophilic emphysema. We haven’t identified other areas of infiltration, but we know there are some.)

Please try not to lose hope. Keep trying. And take copious notes, documenting everything possible - answers may be found in those notes someday.

Good luck! I’ll be thinking of you and hoping you find relief soon.

Debbie