Peoples experience of biologics

[Whizzymaz]

Hi all asthmatics out there on biologics hope you are all well. I have been diagnosed with severe eosinophilic asthma and allergic asthma and have been approved for biologic therapy 12 month trial. I had my first injection of Fasenra in December and second one in Jan. I am due my third one next week. I am aware it is still early days but this time, as with the previous time, it seems as if my asthma starts to deteriorate in the 7 - 10 days prior to the injection. Could be coincidence, air quality etc, but I was just wondering if anyone else had experienced this? Thanks for listening

Whizzymaz

[Pipsqueak77]

Hi

I was on Benra for 2.5 years and initially it worked well. However like you I began to get more asthma exacerbations towards the end of my eight week wait period between injections. It took me a while to figure this out.

I mentioned it to my cons but he said even if it was the case they were not able to alter the dosage of the therapy so I could have it more often.

So I have agreed to come off of Benra and am due to start Dupilumab on Monday - as a trial to see if things improve. I’m not massively happy about this as the injections are only two weeks apart and I’m not looking forward to that. It also seems to have a few more recognised side effects.

However I need to give it a try and have assurances that I can go back onto Benra if the Dup fails or side effects are too bad.

I hope you get on ok with Benra and that it begins to work a little more effectively for you - it’s a great drug for eos asthma.

🤞🤞 for us both!

😊👍

[Whizzymaz in reply to Pipsqueak77]

Thanks for replying Pipsqueak77 and hope the Dupilumab works better for you and yes 🤞🤞for us both and everyone else on this journey. 😀

[Spedinoz]

Hi Whizzymaz,

I was previously on Benralizumab for around two years until December when I changed over to Dupilumab. Consultant was not happy with my frequent flares at about six to seven weeks after my Benra. He had been suggesting a change for about 6 months but I was concerned as since starting Benra I had no hospital stays a big plus as well as fewer asthma symptoms for those six weeks. I have also been told I can go back to Benralizumab if Dupilumab does not work, wouldn’t have changed if this wasn’t an option.

He has said I will move to Tezepulumab once it is approved apparently good option for me as I have allergic and eosinophilic severe asthma. Finding Dupilumab okay have symptoms most days but a lot milder then without biologics or when on omalizumab and no flares so far.

So much trial and error, but so happy that there is options these days.

Good luck hope you find it makes a difference for you 😊

[Whizzymaz in reply to Spedinoz]

Thanks for your reply Spedinoz and hope you are able to try the new Tezepulumab and it works for you, it shouldn't be long now. I am much better on the Benralizumab even though I have only had two injections so far, its just around the last 10 + days and just wondering if its coincidence. I am so desperate to reduce maintenance dose of steroids. 😀

[Leccybil]

hi whizzymaz, hope the new bio works better for you, could I just ask what are your eonsinophil levels, mine were in the 1000s but are now down in the high 100s. The asthma is very well controlled but I have to take numerous inhalers daily. Looking a the comments on this site I wondered whether bio would be a better option for me. Good luck

[Whizzymaz in reply to Leccybil]

Hi Leccybill, my eosinophils were in the 500's and IgE's 340. Perhaps it would be good for you to talk to your GP about it. Good luck and stay well 👍

[Pipsqueak77]

Hi Leccybil

I think you might be confusing eosinophil levels with IgE levels?

Eos levels tend to be quoted in the 0. and IgE in the 100 and 1000 - IgE is relevant if you are looking at Xolair as a biologic as this is aimed more at allergic asthma. In Eosinophilic asthma you would tend to be placed on one of the other biologics eg. Mepolizumab or Benralizumab etc..

Biologics are for specific for different phenotypes depending on your type of asthma.

Of course you might have both.. but you would have two different tests then do two different sets of results.

Sorry - I haven’t explained that well - I hope you are able to understand my ramble!?

Ask your hospital team… they will explain far better than me!!

😊👍

[Tree20862]

I have severe persistent asthma with high igE levels so I am on Xolair/omalizumab. I have been on it for more than 5 years. When I first started on it, it was the beginning of my fall allergy season. I had a really tough season with a bad exacerbation that went on for 4 months. I was on various amounts of prednisone for a total of 6 months... That had been the worst I had ever been! Once I weaned off the pred, I was off for 6 months. Doc had to put me on a short course for the fall. But then I went 15 months without any need for prednisone!I still have occasional exacerbations but they are about once a year or less. The last 2 times, doc has used even less prednisone each time to break the flare up... Successfully! The first year, she said give it time, some people need more than 6 months to see improvements. That was the case for me. After the 3 years, I started coughing a couple of weeks prior to getting my dose so we changed my maintenance inhaler.

Give it time. Don't forget to take your other meds. Keep track of your symptoms.

I wish you well on this journey.

[Whizzymaz in reply to Tree20862]

Hi, Thanks for your reply, that is reassuring, asthma symptoms have thankfully improved again after deteriorating earlier in the week. It is indeed a journey isn't it? Good luck with yours also.

[Madbiker1]

I have had mepo, benra, and omalizumab. None had the hoped for outcome. Now a month into dupilimab.Fed up with taking big hits of steroids for the last eight years - I am poorly enough without osteoporosis etc.

Have been hanging on for eight years in the hope something would work - sadly I now realise that I cannot do my job much longer - steroids hsve enabled me to carry on but I refuse to have any more.

[Whizzymaz in reply to Madbiker1]

Hi Madbiker1 , thanks for sharing your experience, I really hope the dupilumab works for you, the side effects of steroids really are certainly not good, I also have severe osteoporosis and cataracts, on top of feeling rubbish, so like everyone else, really keen to get off them. Good luck 🤞

[martin_1972]

Hi,

I has on benralizumab for about a year but did it did not seem to do anything in relation to reducing my maintenance dose of pred but did seem to reduce my attendances to hospital but never had any deteriation in the 7-10 days run up to my next 8 weekly injection but due to not having any effect on my Pred maintenance dose it was deemed to be ineffective to i have now been on reslizumab (Cinqaero) for the past 6 month which is an IV monthly treatment which i have to go to the hospital for but since starting this my hospital admission have been the same but i have been able to decrease my maintenece dose of pred to below 10mg which i have never got to before without being hospitalised within 3 days of the change to 10mg so if benralizumab (Fasenra) is not working there are altertatives which work just as well or better

[Whizzymaz in reply to martin_1972]

Thanks Martin that is very reassuring , hope reslizumab continues to work for you, being able to reduce your prednisolone is a great step forward.

[Yogiyogi57]

I've been on Fasenra for eosinaphilic asthma for 2 and a bit years now, was like a bloody miracle, worked within a week of starting it and I've gone from not being able to do anything to nothing I can't do. Stopped taking steroids straight away but I still have 2 inhalers on a morning which sees me good for the day. Hope something works for you. Trevor.

[Patk1]

I'm a month behind you.i found after 1st, significant improvement,but 10days before 2nd, my fatigue was worse then usual + increase in mucous day before 2nd.coincidence I was thinking,til u posted.ill see what ths mth brings.great post,thanku

[Patk1]

Fasenras been gd for me but wears off and I'm very symptomatic in 2wks before it's due