Dupilumab and joint pain: Does anyone... - Asthma Community ...

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Dupilumab and joint pain

runcyclexcski profile image
17 Replies

Does anyone get joint paint from Duilumab? I started on it about 2 months ago, and every morning I wake up with pain in my wrists and feet (similar to restless legs I used to get as a kid). I used to think this was the proton pump inhibitor, but now I firmly believe it's the Dupi. Arthritis does come up in the list of its side effects

It's not the end of the world, just a bit annoying, and (I think) I am not old enough yet to get arthritis due to age. I wonder if this is going to continue while on Dupi. Or, if I stop, I wonder if the pain will go away. I do not think Dupi is doing much to the asthma (at least not yet). If it had made the asthma better I would have accepted the joint pain

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runcyclexcski profile image
runcyclexcski
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17 Replies
peege profile image
peege

Morning, i don't take it however, I've awful achey muscles and some joints I'm beginning realise it could be due to statins - do you take those? I've been taking them since being dx with hereditary high cholesterol in my early 50s weighing 9st, very fit, very healthy diet & loads of exercise. Flipping annoying but the alternative is stroke or heart attack. Good luck, hope you work it out. P

runcyclexcski profile image
runcyclexcski in reply topeege

Thank you peege. No, do not take statins (not yet at least!)

Poobah profile image
Poobah

I don't take any biologics, but I'm a member of a Facebook group for asthmatics with aspirin intolerance and many members are on Dupilumab and joint pain is a known side effect. But the accounts all vary, from experiencing joint pain after the first injection, to pain only starting months into the treatment or no joint pain at all. Sometimes the pain subsides, sometimes it only got worse. There doesn't seem to be any one pattern.

Pattern of side effects wasn't unique. Decisions to remain on the treatment or come off it were individual, depending on people's asthma severity and degree of side effects. Some swapped successfully to other biologics. Some reported fast relief from joint pain after coming off Dupilumab while others continued to suffer joint pain for several months with pain eventually subsiding.

runcyclexcski profile image
runcyclexcski

Thank you, Poobah. This is very helpful. I am a bit surprised that my consultant did not know about this when I let her know. That said, I biased her opinion by saying that the reason could be the proton pump inhibitor.

I might go back to Xolair -- with it I at least did not have any side effects. I am hopeful that allergen shots help. They used to help, and I should not have stopped them. That said, they were not available in the UK anyway.

Poobah profile image
Poobah in reply toruncyclexcski

PPIs are known to inhibit the absorption of dietary vitamin D. So maybe, before you change anything, you could get your vitamin D levels checked, just in case that's contributing to the joint pain. We're coming out of a long winter and if you just need to up your Vitamin D levels, that's easily addressed rather than swapping your meds. Ideally, a good level would be around 100 nmol/L. Adequate range starts at 50nmol/L.

runcyclexcski profile image
runcyclexcski in reply toPoobah

Thank you, Poobah. I probably have near zero D, b.c. I never go outside (the sunnier/warmer the weather, the worse it is... my ideal temperature is +5... +15 C :).

Poobah profile image
Poobah in reply toruncyclexcski

I'm not very tolerant of the heat and my skin easily burns. I started taking VitD3 because of the aches and pains I started to experience. Not only did it address that, but it stopped my migraines. But even then, after taking 2,000iu pd for several years, my vitamin D levels were only just in the adequate range. I'm driven by the knowledge what a lifetime of asthma treatments has had on my skeletal health, as my family has a predisposition to osteoporosis, that's aside from the effect steroids has on dental health. And we also know that good levels of vitamin D is necessary for our immune system.

If you do consider taking VitD3 supplements, soft gel are best as it's a fat soluble vitamin and so fat is necessary for absorption. I use oil based sprays as PPIs and antacids have a detrimental affect on the digestive absorption.

runcyclexcski profile image
runcyclexcski in reply toPoobah

Thank you, Poobah. I have also noticed dental issues appearing after having been on prednisone for almost 3 years non-stop now (2 mg a day, not super-high). Interesting that doctors do not point out these issues, and we have to find them out from each other.

Poobah profile image
Poobah in reply toruncyclexcski

I agree, I've learnt so much from fellow patients!

BrittanyOk profile image
BrittanyOk

i know joint, back pain and sore throat are the top three side effects in Tezspire. I had severe back pain.

runcyclexcski profile image
runcyclexcski in reply toBrittanyOk

Brittany -- did the back pain stop you from taking Tezspire, or it eventually resolve? They are considering to put me on tezepelumab if dupi fails.

Xolair was great in terms of side effects, but it seems to have stopped working after 10 years on it.

BrittanyOk profile image
BrittanyOk in reply toruncyclexcski

Hey, so i actually only took one dose (one month) of Tezspire only bec again, my low back pain was SO bad it was preventing me from doing, anything. I already had existing back pain due to moderate-severe DDD. So, im not sure if it just worsened it or what. It’s too bad these companies can’t be more fourthcoming about how these biologics produce those odd side effects. But i can sort of imagine it given the pathology of these biologics and inflammation. Anyway, so begrudgingly, i opted to hold off on any further shots. I could of sworn Teszpire had some effect of my breathing. My best of luck to you!

runcyclexcski profile image
runcyclexcski in reply toBrittanyOk

Thank you, Brittany, for the update. Too bad you had to disconinue it. Did you think it made your breathing better? These drugs are antibodies, perhaps, they have some off-target to which they bind at a lower affinity than to their intended one. Xolair is quite benign in terms of side-effects: it binds IgE directly.

Ern007 profile image
Ern007

Hi. This from "Medical News today" - I have never heard of this drug, so I looked it up.

""New or worsening joint pain. Dupixent can cause new or worsening joint pain. If you have a history of joint pain, tell your doctor about this before you start using Dupixent. Also tell your doctor about any new or worsening joint pain you experience while taking Dupixent.""

LINK-------medicalnewstoday.com/articl...

runcyclexcski profile image
runcyclexcski in reply toErn007

Thank you Ern. It's one of the "better" ones for Asthma apparently, in a side-by side meta-comparison. But it does not seem to work in my case, go figure. I might go back on Xolair, or try the T-antibody.

Ern007 profile image
Ern007 in reply toruncyclexcski

You know what suits you. My COPD nurse was not very happy with me, when I said I did not want Trimbow.

Over the years seen lots of changes to my inhalers, but now I am settled with what I have. Medicines can affect or work on people different ways.

Goog luck.

whobejack profile image
whobejack

One thing to be aware of is joint pain and weakness can be the result of tendon and ligament damage from a lot of prednisolone use over the years.

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