How did you manage side effects of Nucala (mepolizumab)?

I am on 300 mg for over a year and don’t have major side effects beyond some tiredness after the injections and a little knee pain. What side effects are you having?

Diarrhea intermittently. Persistent fatigue and muscle pain. And a rosacea like facial rash. My Nucala is being reduced to 200mg to see if I can reach a happy medium between the positive effect of the drug and the negative side effects. Anybody have anything to offer?

@lluth412
Has Nucala helped with your symptoms? I am not seeing much of a difference, but it's only been 2 months.

It helps me not relapse back to what I have (chronic eosinophilic pneumonia possibly egpa). So that does help the coughing and my lungs filling up. It’s less effective for the day to day shortness of breath and occasional asthma attack. For that I still need inhalers and I’m still on prednisone.

@lluth412
Thank you for the info. I have been reduced to Nucala 200mg and hoping for the best. My lung disease is well controlled now. I had a dose yesterday and still have myositis (( low back and shoulders) that is responding to a combination dose of gabapentin 100mg & Tramadol 50mg.

@johannasr
I was on Nucala 100mg for over a year. It was not helpful. I had acute breakthroughs of my lung disease. (Hypereosinophilic Syndrome) I have been on Nucala 300mg x 2 doses. My lungs were then amazingly clear but I had untenable side effects. I am now being reduced to 200mg. My understanding is that different doses are recommended for different diagnoses.

@lluth412 hi I’m new to nucala I was getting out of breath just walking around my house, on other medications but wasn’t enough, I had one injection so far and it took two weeks to feel a difference but now 3 days away from 2 nd injection I’m becoming out of breath again, my question which I hope you can answer is does the injection only last a month and start wearing off? I do see your on 300 mg mine is only 100, did you start off low also, sorry for all the questions

@suzyq61

Please ask as many questions as you need! Happy to pass along what I’ve learned after 15 months of Nucala.

Your experience so far is totally normal. For me, Nucala took about 6 months to feel consistent all 28 days.

From my research, what Nucala does is block the signal (IL-5) that helps eosinophils grow and stick around, so they go down gradually over time. That’s why it can take a few injections for things to really stabilize. Im currently testing at zero eosinophils in my body and my Dr now says if I go longer than 28 days I’ll probably start feeling worse bc they would be able to start growing again. So I stick closely to 28 days and try to make sure my schedule is free on shot day.

My 300 mg is due to my disease (mine is threatening to go systemic so we have to hit it with a bigger dose) - if you have eosinophilic asthma your dose will stay at 100 mg.

Does the injection hurt? I have a few tricks if you feel any pain I can pass along.

@lluth412 thank you so much for your info it helps, I don’t have asthma just COPD, my first shot i didn’t even feel it, the nurse put in my stomach. Everyone i know that gets any kind of shot they say do it where you got fat lol that’s my belly. This coming Monday I do the second shot my self in the office. Thank you so much, listening to you I can understand more. Stay well

@suzyq61
Good luck. Let’s continue to share as needed!!