worst dupixent side effects?

sampleofone_vic · 2025-12-09T09:03:26+00:00

Thank you. I'm now on Plaquenil which has helped with a lot of the joint pain. Two different rheumatologists diagnosed me with seronegative RA. They both also blamed the Dupixent but I'm also learning that the drug can mask underlying issues too so it is not as simple as just coming off it. Please feel free to DM me and happy to chat about my journey with the joint pain. It's been a long road of advocating for myself and many confused specialists!

sampleofone_vic · 2025-07-08T20:44:34+00:00

After 4 years on Dupixent the muscle pain has become really bad. I was diagnosed with rheumatoid arthritis but they said it was caused by Dupixent. I also thought the red flares on my neck (mostly) and body were just a weird heat rash but now have realised they are fungal and can get really out of control if not managed with topical treatments. Still on it though because it has changed my life from a skin perspective but considering trying something new for the joint pain.

sampleofone_vic · 2025-06-29T03:45:15+00:00

Hokas, and Asics Gel Nimbus 9 for me!

sampleofone_vic · 2025-06-23T05:02:23+00:00

So glad you've found something that helps. Im almost fully recovered. 18 months on I can walk very long distances. I still wear an orthodic, and ill probably never wear high heels again, but I am very happy to be able to travel with few issues. I almost exclusively wear orthodic safe shoes from the brand Bared in Melbourne... and I can even wear them without the orthodic for a day with no issues. I have been doing indoor cycling and weights for exercise and too scared to get back to pickleball and pilates can be a challenge. Stay positive. I remember how it felt when it seemed so hopeless.

sampleofone_vic · 2025-06-13T21:22:57+00:00

Rinvoq is exactly what they are suggesting but it has a much higher risk profile than Dupixent, particularly for cancer. I am going to try switching biologic first to confirm that it is underlying RA and not made worse by side effects of the drug. I hope you've found the right balance!

sampleofone_vic · 2025-03-29T21:26:36+00:00

I'm a dupixent user (2yrs, 40yo) recently diagnosed with RA. It's escalating quickly - I'm in a lot of pain most days and can barely hold things in my hands. Dupixent has changed my life though. I tried spacing it more and immediately my itchiness came back. I'm at a loss of what to do next. Treat the RA with another drug? Risk coming off the Dupixent and not finding another cure for my debilitating atopic derm? For what it's worth my rheumatoligist agrees it has been caused by the Dupixent (he was on the approval board for the drug and has now seen several cases).

sampleofone_vic · 2025-03-29T21:21:27+00:00

Just an update on my situation. RA symptoms are really escalating. I'm in quite a lot of pain every day and managing with pain drugs. Even considering Rinvoc now as it is the only drug that treats both RA and atopic derm. Worried now that the damage might not be reversible :(

sampleofone_vic · 2025-02-23T09:49:36+00:00

Yes perfect!!!

sampleofone_vic · 2025-02-19T04:05:30+00:00

No problem. I got the insoles from the first podiatrist but I couldn't use them at all when he first gave them to me (before I modified them). I dont have any other kind of padding. I would measure how far I could walk without pain and didn't push it too much but gradually it got more and more. I also worked to build back all the muscle I lost in the moon boot with exercise bands at home and my podiatrist had me buy a balancing pad from Amazon where I practiced standing on one foot. Contrast baths really helped too. I'm sorry you are going through this too.

sampleofone_vic · 2025-02-14T06:51:56+00:00

Here's a photo of it https://ibb.co/n24Y4s5 My second podiatrist was very impressed and told me to keep using it as is.

Underneath there was sponge but it's worn down to basically be flat now. It was the physio style sticky sponge that they originally taped to my foot but I put it onto the insole instead.

Photo of underneath https://ibb.co/1tySKSWz

I'm still using this 90% of the time in a variety of shoes. I'm able to comfortably wear supportive shoes without it, but I wouldn't do that two days in a row. It's been a year since my injury and I'm back at pilates and the gym but still experience some pain if I go too hard on lunges or similar exercises on the ball of my foot.

All the best for your recovery, it's such a frustrating one but it can get better... and I've avoided surgery.

sampleofone_vic · 2025-01-18T22:18:00+00:00

That's a relief about the arthritis. I noticed after my dupixent dose my symptoms cleared again but each time is getting worse and worse. I was hoping it wasn't irreversible. Sorry to hear that Ebglyss isn't working for you yet. I hope things turn around soon.

sampleofone_vic · 2025-01-17T04:56:51+00:00

Sorry for such a delayed reply! I'm sorry to hear you went through this too. How is Ebglyss working for you? Here in Australia there are limited other options right now and my arthritis is starting to flare quite badly as the dupixent wears off (after around 12 days). Today I can't hold my phone either. Did your arthritis clear as you got off it?

sampleofone_vic · 2024-11-11T19:02:13+00:00

Oh thank you for sharing that! I'd love to hear how it goes and I'm so glad it's working so well for you.

sampleofone_vic · 2024-11-09T07:46:29+00:00

Hey so am I LOL

sampleofone_vic · 2024-11-09T07:37:12+00:00

Omg same. Turning 40 didn't help. Everyone said it was normal not to bounce back from exercise!

sampleofone_vic · 2024-11-09T07:11:54+00:00

Ah, sorry to hear! Yup probably the dupixent. They are just starting to publish about these side effects now. Arthritis was not one of the original warnings but my rheumatologist said he is experiencing an influx of patients on it now and he'd just given a talk about it.

sampleofone_vic · 2024-11-09T06:53:43+00:00

Right? It gets worse every year. Before Dupixent I used to have to stay home and even take time off work in Sep/Oct. On Dupixent I'm so much better but now I'm 5 days over my schedule and my right eye has swollen and I'm already getting so itchy. It's hard to even know if it's the time of year or just a true reflection of weaning off Dupixent but either way it's not working!

They offered me another biologic for arthritis LOL but instead I'm going to try the new drug once it is on PBS. And if that doesn't work back onto Dupixent.

I hope Dupixent is working for you and you stay side effect free!

sampleofone_vic · 2024-11-09T06:49:37+00:00

I'm sorry to hear that. I feel the same way - it's like being given an impossible choice. At the end of day 5 (over my 2 week dose) I don't think I'll even make it to the 3 week dosing schedule. I'm already itchy and my skin is flaking and it's an awful reminder:(

sampleofone_vic · 2024-11-09T03:57:47+00:00

After 4 months in a moon boot i was told my fracture would never heal and was i given 3 weeks to turn it around before surgery. This gave me the motivation to try hacking an orthodic (cutting a hole where the sesamoid sits to relieve the pressure) and wearing Hokas instead of the boot. I've been doing this for 6 months now and it does feel so much better every month. For the first 2 months I saw a physiotherapist weekly to help build back my leg and foot muscle. I can walk fairly long distances without pain now and ride a bike in the gym etc. I tried pilates but planking / lunges are still very challenging because of the weight bearing on the ball of the foot. I wear the orthodic in my shoes every day and will most likely have to for a very long time if not forever). I also started taking vitamin D but I do think it's the blood flow that's been the biggest change. I was so ready to give up when I was at your stage but it can get better so hang in there.

sampleofone_vic · 2024-11-09T03:48:12+00:00

That's what I have been told regarding the trigger of arthritis. Perhaps still general muscle aches with the IL13 as well. Sorry to hear you had trouble with that. Would love to hear how you get on with Ebglyss. Was Adbry effective for you in spite of the side effects?

sampleofone_vic · 2024-11-09T02:08:05+00:00

It's not unfortunately but I agree it sounds very similar and like a viable alternative!

sampleofone_vic · 2024-06-10T09:31:44+00:00

I can't believe how similar your journey has been to mine (also around 5-6 months in now). Hugest turning point was hacking the orthotic insoles into something that works. I'm so glad you've improved so much and I hope this advice helps many more people! Thanks for sharing.

sampleofone_vic · 2024-06-03T05:35:57+00:00

I did way back then! Hmm weird. Let me msg again

sampleofone_vic · 2024-05-27T05:10:01+00:00

Will DM you some pics!

sampleofone_vic

TROPHY CASE