Anyone have experience with Dupixent for asthma?

Hi everyone,

I just did my second dose of Dupixent (first loading dose of 600 mg, second dose of 300 mg). I was prepared for the injections to hurt but they didn’t at all. So I thought I had it made. Then 2 hours after the first injection I had a horrible headache and body aches that sent me to bed and I was really fatigued and just off for 3 days. When I got close to second dose I had some of the worst days with my lungs. Second injection was quicker - 30 min afterwards I started sweating (I was on a zoom call and had to shut off my camera) then every muscle in my neck and shoulders cramped up. I’m two days out now and feeling much better.

Are these experiences just side effects of my body getting used to the med or is it standard for all shots? If so, I will need to switch to another day/time (not in the middle of the work day!). Any other suggestions/experiences when you were beginning the med would be welcome! (Taking it for chronic eosinophilic pneumonia and hoping it helps me get off prednisone).

Lisa

Hi, @lluth412. I merged your post into this discussion, "Anyone using Dupixent for asthma/allergy treatment?" I thought you'd find other members here who might talk about experiences they've had with this injection.

I personally have taken prednisone for 5 days at a time for asthma/allergy exacerbation that would not calm down, usually after traveling out of my state. I can understand preferring not to take it, as I usually sleep only 4 hours a night while on it and understand from my family it takes down my filter on what I say and how I react.

Here is some Mayo Clinic information on Dupilumab (brand name: Dupixent) that might be of interest to you:

-Dupilumab (subcutaneous route)
https://www.mayoclinic.org/drugs-supplements/dupilumab-subcutaneous-route
Please note that under "Side Effects" it talks about contacting your doctor immediately if you have any of several symptoms, including the headache and body aches you mentioned. Have you spoken to your doctor about the side effects you've experienced? If so, what did the doctor say?

Thanks for merging it. I've been on prednisone since March, so 9 months. I am down to 10 mg now so the sleep is better but the side effects pile up and even on 10 mg they are not fun. Every time I try to go lower than 10 mg my lungs become very unhappy; 10 mg is enough to stop my lungs from severe obstruction but not enough to eliminate it. So I'm living in this weird sometimes I'm okay, sometimes not okay world. Have a lot of hopes pinned on Dupixent.

I've read everything I can find about Dupixent, so understand the side effects. Mine are not severe, and I've heard the first few doses can be rough. I am curious to hear from others who are farther down the Dupixent path about their first few injection experiences.

I'm having a follow-up video call with Mayo Dr. tomorrow and plan to cover these with him.

Thanks for the suggestions and looking forward to any others!

Lisa

I tried it once and had significant headache and neck pain. I have a neck injury & deal with pain a lot but Dupixent made it way worse. I stopped it and went back to Fasenra.

I've been on Dupixent since October of last year for eosinophilic COPD. I've had no bad side effects since using it and it has lowered by eosinophil counts to normal or near normal helping with inflammation. It has dramatically helped my esophogisitis.

As far as I can tell, no side effects from Dupixent. It and Trelegy seem to raise my resting O2 saturation rates and give me more reserve to deal with things that come up without getting an exacerbation (like when both of my O2 machines are broken at the same time).

So far, I have some slight arthralgia (stiffness/tightness in joints — knees and feet), and a bruise when I injected myself. When H injects me, it works better—no bruising and I get my full dose serum without dripping down my belly (like when I try injecting myself).

In July 2019, my pulmonologist prescribed Dupixent for severe asthma. After 2nd injection/dosage, I began having extreme joint pain (most everywhere) to the point I could not walk for months without assistance (crutches, cane, etc.). The onset was so quick, and I immediately discontinued Dupixent. Over the next few months, I did research and contacted the Dupixent 800# to determine if Dupixent could cause arthralgia. Nothing at that time revealed a link between Dupixent and arthralgia/seronegative RA. In November 2019, I underwent diagnostic testing with a rheumatologist, and at that time I was diagnosed with seronegative RA. I would only find out later than in January 2020, NIH revealed that there is a direct link between Dupixent and arthralgia/seronegative RA which is still available on NIH website and various other sources. Since then, I have had 7 surgeries to include double total knee replacement, RFA, etc. and more in my future. There is so much more to my story, but I will not bore you. I'm not saying that everyone will have this side effect, but I do believe it is definitely worth mentioning.

I am so sorry to hear this. Steroids/prednisone usually only cause those symptoms when weaning of or attempt to discontinue. In fact, I was placed on prednisone due to the joint pain and inflammation in discontinuing Dupixent. You are in my shoes from back in 2019, but there is plenty of information available on this adverse reaction to Dupixent now. I urge you to look into Dupixent causing joint inflammation/pain, seronegative arthritis, feeling unwell, etc. It is also listed on Dupixent official website that it can cause these symptoms. Cut and paste some of these into your browser. There are many sites which list arthralgia/seronegative arthritis as a side effect. https://www.drugs.com/medical-answers/dupixent-joint-pain-3552823/ https://www.dupixent.com/frequently-asked-questions https://www.aaaai.org/allergist-resources/ask-the-expert/answers/2022/arthralgia https://www.reddit.com/r/eczeMABs/comments/zc89hc/dupixent_and_joint_pain/?rdt=61993 https://pmc.ncbi.nlm.nih.gov/articles/PMC8814740/ https://pmc.ncbi.nlm.nih.gov/articles/PMC8814740/ I hope that when/if you do decide to discontinue Dupixent that your symptoms disappear and that you are not left with any permanent damage. May I ask for what diagnosis are you taking Dupixent?

No I actually loved it. My pulmonologist just felt as though Dupixent might prevent our frequent bronchitis & sinus infections more. Daughter & I have a genetic lung disease causing other immunity issues so we are a bit different case. I would definitely try Fasenra. It got my eosinophils to zero.

I started treatment with Dupixent about 3 months ago. It works so much better for me than Fasenra and Tezspire. The only side effect I have and it happens when I took the previous injections also is injection site reaction. I always have a 2 inch diameter red, swollen, itchy patch of skin at the site. It goes away in about a week.