Nucala: Good morning....has anyone that... - Asthma Community ...

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Nucala

Headoverheels profile image
8 Replies

Good morning....has anyone that uses Nucala experienced joint pain? I had the first injection last Friday and today I am noticing I have joints :(

I would welcome your comments please.

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Headoverheels
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8 Replies
hoven profile image
hoven

Hi, yes I have been on Nucala in the past and did indeed experience joint pain and backache. You will have to see if the side effects outweigh the benefit to your breathing. everyone is different. good luck

Headoverheels profile image
Headoverheels in reply tohoven

Thank you. Yes...I definitely think the side effects will outweigh the benefit to my breathing, already I feel I have more energy.

Mijmijkey74 profile image
Mijmijkey74 in reply toHeadoverheels

I don't have Nucala injections, I have a different named injection for my asthma (can't recall it's name unfortunately) but had whole body deep bone/muscle and joint pain and aching for many many months. I still get the deep muscle/joint aching but it does now subside throughout the day and becomes more noticeable in the morning and early to mid afternoon along with later evening. Gaps inbetween now where it isn't gone, but is mildy managable enough to do a few things before needing to rest from it to try and somewhat recharge. The benefits of the injections are no significant chest infections for months, no antibiotics, no steroids and no A&E visits or hospital stays for 5 plus days at a time. I was even able (despite being very poorly indeed) to manage covid at home. Though that was me not going to hospital when told I should because I couldn't deal with being a covid prisoner unable to leave the ward for several weeks and also because I am a extremely fussy eater I always have to order food to the hospital via delivery apps to go out off ward outside to collect which is extremely expensive to have to do daily if nothing on menu I will eat at all. And with the cost of living extortionate hikes in prices on everything I simply now cannot afford to be an inpatient in hospital confined to a ward unable to even get something to eat from the restaurant or shop of the hospital in my local area. I would have starved to death confined to the ward due to having covid, so decided it in my own best interest to stay home where I could eat what I will eat and also go outside into my own garden as and when I wanted and rest undisturbed by nurses and doctors wanting to do various checkups/tests/bloods/jabs. I decided I'd only call out an ambulance to go to hospital if my varios stats went below a certain level and stayed there, or I started to feel even worse. It took from September until early November for me to recover at home, but I felt immensely proud of myself for managing yet again to fully recover via my own immunity system that is supposedly extremely low I've been told often by various GPS and doctors. It was also time for my next asthma injection not long after I got covid. Had to miss that obviously, and felt had I been able to have had it in some way it would have boosted me and quicken my covid recovery. Sorry went off on a tangent there. Basically the injections do cause pain/aching but the benefits are greater. 😊

TC770 profile image
TC770

I have joint pain after the first injection, week 3. My right thumb is completely stiff. I like the extra breath but was not desiring to switch to a new challenge. I ask the forum: does the pain get better over time?

Headoverheels profile image
Headoverheels

I am just over 6 months on Nucala and I find the side effects can vary from one month to the next. Some days I feel fine and other days I feel every joint in my body and occasionally pain in my back but I have to ask myself is this due to the injection? Who knows? One thing I have noticed is lethargy but saying all this I am being to accept there will be side effects and would I go back to pre-injection? ....NO WAY! It's early days for you, unless your side effects become unbearable stay with Nucala. My worry would be to swap to something far worse! Good Luck.

nuco profile image
nuco

Nucala and IL-5 biologics have been linked to new onset Rheumatoid Arthritis and worsening of autoimmune diseases. I have lupus and EGPA so it has been a balancing act. At my high dose of Nucala (300 mgs) my joint pain/swelling has become untenable

Headoverheels profile image
Headoverheels

Thank you for your input nuco. That is worrying and I shall keep it in mind. I detest having to take all these meds and often wonder what long term effect there may be. It's living between the devil and the deep blue sea! I would not be able to function without them. I am sorry to hear you are having such problems. It really does sound so miserable for you. Have you been offered an alternative biologics? It might be worth a try in your case....I do hope so.

Headoverheels profile image
Headoverheels in reply toHeadoverheels

Ps nuco....how long have you been using Nucala?

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