Biological Treatments??

[asthmaticclimber]

Wondering what people’s views on biological treatments are?

I’m waiting for a referall after 10+ courses of steroids in the last 2 years. Seems like the NHS works at 0mph atm and it takes ages to get someone to look at me. Although I know they are VERY busy.

Been told if I’m still symptomatic (which I am) biological treatments might be the best option for me, however I know it’s going to be a long wait.

Any thoughts on how to survive the wait 😂 and on biological treatments in general? As a BSc Medical Science student I’ve read all the literature but could use a personal view. The idea of having to have injections/infusions regularly as a 20 year old is kinda a scary thought, I’d like to be as normal as possible for as long as possible.

Alice

[Lotti_321-]

I just started biologics and been on them 16weeks now and am 22. So I can understand it’s a lot to take in/ know where to turn.

But, in the 16 weeks I’ve had them, they’ve been life changing. I’ve had some of the best nights sleep back to back for over 8yrs. Dramatically reduced my symptoms day to day.

Ibe had one course of steroids in that time. They’ve said its not going to cure it. But reduce the burden on my lungs flaring up as frequently & as serverly.

I’m on Omalizumab (Xolair) 4injections every two weeks. Happy to talk further if I can help, message me.

[Treed12]

Is there a point where you automatically get referred? I've had 23 courses in the last year. My consultant has only said he doesn't want to put me on permanent steroids but he's running out of options. Can I ask, did you just get referred or did you ask? Sorry I'm not much help with your question!

[Poobah in reply to Treed12]

I think that a respiratory specialist has to recommend biologics. If a specialist is prescribing so many steroids ask them if your type of asthma would benefit from biologics.

If it's your GP prescribing multiple courses of steroids it's time they referred you to a specialist. But you may have to ask/insist.

Our respiratory specialist team also undertakes research so if yours has a research arm you may benefit from asking if you can help - if you think one of the trials sounds useful you can sign up. But you can opt out too.

I did this and it meant the team were very accessible and I got treatment very quickly. Just a thought.

I do hope you get a better fix than multiple steroids.

[hilary39]

My new crusade in life right now is to tell more asthmatics about the dangers of regular prednisone use since literally none of my pulmonologists or allergists or primary physicians ever did.

I have had asthma since I was 8 but it got a lot worse in my late 20s. I managed flare ups with prednisone (usually one course a year) until I was 37 when it got so bad I started the track to get on Xolair. I’ve been on Xolair since April 2019 and it has been life-changing BUT I didn’t get on it soon enough unfortunately.

I was on prednisone on and off for months last winter and spring and because of that, I developed adrenal insufficiency which means my body has stopped producing cortisol. It is a life-threatening condition I will have for the rest of my life and I now have to take medicine three times a day to keep the cortisol levels in my body up. Many of my fellow AI support group members also developed it after regular prednisone use for asthma.

I cannot figure out why more doctors don’t talk about this but I’d like to help get the message out as it has really impacted my quality of life.

If you have been on ten packs in one year, I’d say that’s a sign your asthma isn’t fully managed and that biologics are a good fit for you. Prednisone is not a good long term treatment.

Not trying to scare you, just a PSA I wish someone had given me!

And in happier news Xolair really is awesome. My asthma is so much better and I haven’t had any side effects. I know it seems daunting to think about being on it for the rest of your life but I’ve come think of it like my inhalers and antihistamines, just another tool in my kit to keep my over sensitive body healthy

Good luck! Let me know if you have any questions-

[corinneyvonne]

Hi Alice

Biological therapy has changed my life. In fact it has been kind of miraculous 😁 I have been on Mepolizumab for nearly three years now (I was one of the first in my local authority 👍) and everything couldn’t be more different. I could actually run for a bus (if I wanted to 😂) now. I am well and exercising regularly. My life before this drug was non-existent. Multiple exacerbations, hospital stays, drugs galore, stopped breathing 🤦🏽‍♀️ etc etc etc. Granted I am not as young as you but still scary stuff all the same. I would be persistent with the professionals and just keep asking and asking. There a lot of different types of ‘umabs’ to try so if one doesn’t work try another. Good luck. I hope you have the same success. My thoughts are with you 🙏🤗

[Ayeup]

My consultant has agreed to put me forward for Xolair at the next MDT (hopefully in March). It has been a tough long road to get this far and I cant wait to start on biologics. I've had so much pred in the past year it's made me pre diabetic and my cortisol is rock bottom. Just need to mention there are strict criteria to qualify for biologics but your consultant should be sorting out the necessary spirometry and blood works to determine which type of asthma you have and whether you would be suitable Mine is allergic eosinophilic asthma and Xolair should help with that. I hope you get sorted out.

[beebryonyxx]

I’ve been on xolair 10-15 years old and that was a fight due to my age. It worked great for 5 years and then unfortunately I became immune. I’m currently on mepolizumab but unfortunately that’s not helping so I’m waiting to be put on Dupilizumab.

Unfortunately the process isn’t that quick because of the hoops they have to jump. Just keep pestering them & don’t let them “ leave “ you.