Nucala: On Friday I'm due to have my... - Asthma Community ...

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Nucala

Headoverheels profile image
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On Friday I'm due to have my 6th Nucala injection. The first 3 have been amazing. I felt a new person after battling with Eosinophilic Asthma. After my 4th & 5th I have not felt quite so good and now 'doubt' is beginning to creep in. I notice occasional back pain and aching in some joints. My Peak Flow is no longer reaching my best and I have a slight cough. I feel confused and don't know what steps to take. I am due a hospital consultation (by phone) on 14th Dec. Has anyone had the same experience?

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Headoverheels
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9 Replies
Mark-f profile image
Mark-f

hi … yes I was on this for around 12 months and it definitely became less affective over time . I was eventually changed to a different biologics, Benralizumab.. which I’ve been self administering for around 2 years but this also is less affective now too , so they’re looking into maybe switching me again

Headoverheels profile image
Headoverheels in reply to Mark-f

I appreciate your reply Mark-f. You have confirmed what I already fear. (My PF is down again this morning). I had hoped that after the frustration of changing from one inhaler to another, over a period of many years, that at last I had found the answer.

I will see what the hospital advise...I must remain optimistic!

Good Luck with yours.

hoven profile image
hoven

Hi I was on Nucala a while ago and decided to stop it because of back ache and joint pain.

then I was put on Fasenra which has been very good for the asthma but has also caused side effect problems and I stopped this in 'August due to muscle weak ness mainly in legs. Just had a series of investigations, MRI nerve conduction studies etc. seems I have a spinal problem. Of course there may be no direct link officially but as far as I am concerned it all started around the same time and has to be something to do with it. so back to steroids and antibiotics which is very depressing.

Headoverheels profile image
Headoverheels in reply to hoven

Hoven, thank you for replying. I am so sorry to hear of the problems you had with the Biologic Therapies. I can well understand how upsetting this must be. I think it's something we all dread..having to go back to steroids and antibiotics. If Nucala proves not to work for me I shall be extremely worried at changing, in case the side effects are worse...from the frying pan into the fire springs to mind!

I sincerely hope your spinal problem isn't anything serious and will heal now you have stopped the injections.

Best wishes for the future.

Bubblemum profile image
Bubblemum

Hi,I've been on Nucala for 14 months and its amazing for me despite some initial hair loss. I do experience cold/flu like symptoms, such as aching all over, for a few days after administering Nucala but that's about it.

Are you continuing to take your other inhalers and meds? If so, definitely raise all your concerns at your next hospital appointment. Good luck.

Headoverheels profile image
Headoverheels in reply to Bubblemum

Thank you Bubblemum. I am hoping this might be just a blip and that the 6th injection will increase my Peak Flow. I am still taking my full meds. It's comforting to know that the hospital will ring next week. Long may you continue to be Asthma symptom free.

hoven profile image
hoven

thanks for your reply. whereas the Nucala side effects resolved once it was out of my system, the same things has not happened with the Fasenra and stopping it has not made any difference.

Josephone profile image
Josephone

I did suffer badly with eusonophilic asthma with about four episodes of asthma every year so in effect I was nearly the whole year poorly. I was prescribed nucula several years ago approx and it has worked wonders on me with a mild chest infection yearly. I also inject myself which is extremely advantageous. Obviously get advise but also consider to give it time. Hope that helps

Headoverheels profile image
Headoverheels

Thank you Josephone. It is good to hear that Nucala works wonders for you. We are so lucky that Biologic Therapies are available to us. I was in the same situation as you, having four exacerbations before being hospitalised due to steroids taking no effect. This is when I was offered Nucala.

I will take your advice and give it time as I really don't want to keep chopping and changing. Thank you for your input.

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