Biological Therapy trial: Hi, I have... - Lung Conditions C...

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Biological Therapy trial

fluke13 profile image
14 Replies

Hi, I have just been accepted for a 12-month trial on biological therapy (which I understand is very expensive). I was just wondering if anyone has been on this and how it made a difference.

I have Emphysema/COPD and was diagnosed with Asthma last year. The asthma team have said it should get rid of the wheezing and reduce the amount of flare ups I have. Must admit I'm a bit nervous

14 Replies
Troilus profile image
Troilus

There are people on the Asthma Community who have tried various biologics. Not sure if they are members here, but it might be an idea to post on that forum as well.

Hi, fluke! My advice, if you’re offered biologics for asthma, is to go for it, grab it with both hands! I’ve got severe asthma & Xolair (omalizumab) has made a huge difference to me. I’d got to the stage where I could hardly cross a room, but now I can actually go for a walk 😊

Unfortunately I also have bronchiectasis and aspergillosis, so I still have a lot of chest problems, but tg the asthma is under control & I no longer need massive amounts of pred.

I noticed a big improvement within 6wks of my first dose. No side effects apart from minor hair loss for a few months. You have to carry two Epipens with you because of an ongoing risk of anaphylaxis, but don’t let that put you off because the severe asthma unit at the Brompton said they’ve never had a patient with anaphylaxis, so it’s very rare.

fluke13 profile image
fluke13 in reply to

Thanks for your reply. I was only diagnosed with Asthma last year, but my breathing has worsened since the start of this year. I've had to take 6 rescue packs (antibiotics/prednisolone) in the last 12 months but assumed this was more due to my Emphysema/COPD. Must admit I'm a little nervous about having these injections. My Lung specialist put me forward for them in the hope that it would reduce the wheezing and flare ups. Obviously, my Emphysema is a degenerative illness so will progress over time.

in reply to fluke13

I know, I was nervous too, so much so I put them off for a few months (& I’m not normally a nervous person.) Somehow though, biologics seemed like a big deal. I also felt I was in the Last Chance Saloon, asthma-wise, because if they don’t work there’s nothing else to try (except a different biologic.) Honestly tho, they’ve transformed my asthma, which has helped the inflammation caused by the other lung issues. I was on max asthma meds ie 4hrly nebulised Ventolin and Atrovent, oral pred, montelukast, max inhaled steroids, LABA, blah blah, & still couldn’t breathe. Nighttime was horrible.

Bear in mind you won’t get these drugs unless they’re optimistic they’ll work for you. They’re too expensive! And you have the first 3 doses under close supervision in hospital, & then can do them at home. Good luck 🍀

clematis5932 profile image
clematis5932 in reply to

I was actually part of the trial patients for omalizumab in 2014 at Birmingham Heartlands Hospital. It changed my life, we were told that at the end of the trial if we were the ones on the actual drug not Placeboes, we would be allowed to stay on them. We were not ever given the results. I was not prepared to give up and finally our Gp arranged a meeting for myself husband and the professor of respiratory medicine at the Chest Hospital in Birmingham. We were told that I had been on the drug which I already knew because of how much better my Asthma had been. Because the drug was so expensive that only if you had been admitted into hospital at least three times in one year could anyone be accepted to receive the drug. I have only managed two a year since !!! oh i forgot home iv they do not count, Hospital at home, that does not count, hospice care, that also does not count. Glad that you are finding them helpful.

in reply to clematis5932

So unfair isn’t it?! It happened to me with another drug. I’d done really well on it during the year long trial, didn’t have any infections & my lung function increased by 20%, but the health authority refused funding 😠

Otto11 profile image
Otto11 in reply to

I’m so sorry. That’s dreadful x

in reply to Otto11

Yup. My consultant has appealed but no dice. The bureaucrats rule! I’ve looked into getting it privately but I just can’t afford it. It’s a short term economy because my hospital admissions must cost the nhs a fortune 🤷‍♀️

Otto11 profile image
Otto11 in reply to

Awful. I’m sorry what a position to be in. X

Otto11 profile image
Otto11 in reply to clematis5932

oh how awful. That’s devastating for you. So sorry.

Alice70 profile image
Alice70 in reply to clematis5932

im on omalizumab for urticaria (chronic hives)

Alice70 profile image
Alice70 in reply to fluke13

do you know the name of the injection

Patk1 profile image
Patk1

i cant wait to trial thm.waiting for final tests

djbctla profile image
djbctla

hi Fluke 13,

That is appalling to hear? so its a case of

“he who shouts the loudest “(NOT as you you do, which is, TRY your best to handle it at home)

it sounds to me u would b listened to if, instead of going thru the mill at home during a flare up, you ring Ambulance and make a trip to hospital. Their rules !! That’s seems to b the only way to get the help you need.

It beggars belief, especially as the Consultant agreed your Asthma improved during trials.

Don’t give in, your health is as important as everyone else.

Bernardine.

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