How long before you felt benefit? Biologics - Nucala

[Blueberry37]

Hi, I've started Nucala on Wednesday and I was fine when I got it. Side effects were my tongue felt a bit weird but this passed in a few minutes, felt very tired and then a headache. Today is 48 hours later and I woke up with more energy. But this afternoon I had the same as always - left chest pain, coughing and then needed my bricanyl. I have read that it can take a while for it to work but wondering if anyone else has the same experience? Did it go quick for you or take a few weeks? Did you still have asthma attacks etc? Grateful for any replies especially from those on Nucala.

[janet65]

Hi Blueberry37, glad to hear you're using nucala. I started in July 2020. I'm one of those people that if somethings going to work I know almost straight away. And so it was with nucala, I even had a good first night and felt remarkable the next day. So I've had 3 years of no steroids or antibiotics.

They do say we all react differently so hopefully as it gets into your system it will begin to help you too.

I should add they'd already tried me on Xolair. Again I had the same immediate reaction but it made the injection site swell up for a few days. To me, it was nothing worse than a mosquito bite but the hospital said it was an allergic reaction.

Good luck for better health.

[Blueberry37 in reply to janet65]

That's amazing. I'm hoping it will work for me too.

[ellamental]

Hi. I am on one of the other biologic injections and have been for a good year now. It is benralizumab (Fasenra) so it may not be much help. I started to see an inprovement after 8 weeks but by 12 weeks it was significantly better. As Janet65 said - we are all different. Even though nobody said my asthma would go overnight in my mind this is what I thought ( like Awakenings!) so I was dissapointed at first but the long term improvement is just amazing. Apart from when I have had a chest infection I have not used steroids, don’t need inhalers or nebuliser very often. I have more energy, less headaches, no shaky hands from desperately taking too much ventolin when it didn’t always work, only one hospital visit in over a year and no worry. 😀

[Sparkimoore]

Hi!

I was the first in uk to start NUCALA as available as soon as approved by NICE, before NHS could prescribe as in Jersey.

This drug has without doubt SAVED MY LIFE!

The asthma attacks and total stop breathing episodes have completely stopped & I haven’t even had a chest infection in that time either! Absolutely remarkable. It did take a few months for it to start kicking in but just relax & go with it but have your rescue meds to hand just in case.

The headaches can be vicious, & cause some to stop the meds but I’ve only had fleeting ones thank goodness. I had quite a lot of nausea at the start but this stopped when my body got used to it. The one side effect I do get with it is UTTER EXHAUSTION but a small price to pay to be able

To breathe!

Good luck.

Rose

[Blueberry37 in reply to Sparkimoore]

I'm having headaches but I'm also prone to migranes so I can't tell if it's the medication that's causing it or the pressure in the weather (I'm in the north and it's raining here for weeks now). Good to know that it took a while for you as well, that gives me hope.

[Sparkimoore]

Give it time. Take meds for your headaches && test as much as you can. They should give it a trial of at least 6months to see if it’s going to help. I was expecting something dramatic & thought it’s not working but suddenly realized, hey I haven’t had asthma attack in months, & I never touched my rescue steroids again since starting it in 2017!

I’m on triple dose every 28days cos I have EPGA

( Churg STRAUSS Sundrome ) & the severe Eucinophillic asthma is part of it..

I was on the single dose for 18months bedore the asthma started breaking g thru again & I was becoming unstable & my consultant quickly tripled the dose after seeing an American drugs trial about it. Thank god for him!! ( it’s still not licensed in uk for triple dose, prob the expense which is almost £2600/month..

And the weather in Jersey has been foul for weeks too!!

Good luck & direct message me if you’d like to stay in touch.

Rose

[Blueberry37 in reply to Sparkimoore]

Thank you so much for sharing this. I'm going to try and give it time and I'm taking things for the headache. I've been approval a one year trial which is good. I'm back again end of August for the second shot.

[Sparkimoore]

REST as much as you can!

[Tree20862]

I am a Xolair person. I have been on it since August or September of 2016. It took many months for me to see a difference because I had the worst fall/winter exacerbation that year but since then, I have had progressively less exacerbations, short courses of steroids for much milder exacerbations, usually just once a year (or less often) and due to an illness, not allergies.

I currently am on my longest streak without prednisone for exacerbation (knock on wood).... Dec 2021! That time we(doc) was able to get by with just a 3 day burst of 30mg for 3 days! Shortest amount ever.

I was recently ill but got thru it with albuterol and antibiotics 🍀🤞.

We just recently, in December of 2022 started decreasing some of my daily meds.

I was told it takes 3-6 doses to see an improvement. I wish you well on your journey.

[Blueberry37 in reply to Tree20862]

That's amazing that you're beginning to decrease your meds. Wishing you the best!!

[Tree20862 in reply to Blueberry37]

Thank you.