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Worse pain with Humira? #280343
05/12/18 02:10 PM
05/12/18 02:10 PM
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laurenNYC Offline OP
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I am recently dx’d with AS about 6 wks ago. I started humira 2 weeks ago. The first was the pen dose of 40. For almost 24 hours i had the best relief. I then had severe breathing issuss. Labored breathing for about a week. After that it got a little better but did not go away. My doctor did the next shot yesterday and reduced the dose to 20. That was about 12:30 in the afternoon. I woke around 1 am in severe ribcage pain. I am not on methotrexate. I do take tirosent. And I did get my period overnight. I dont know if that can affect things or not.

I had such amazing relief last time minus the horror and anxiety of breathing issues. I am really confused and disappointed. I tend to be very sensitive to meds, responsing quickly and well or poorly fast.

My doc said the next drug to try would be cocentyx. I have had IBs since a child but have gotten it under control for many yrs now. I am concerned it will induce severe cramps. Bad pooping I can handle.

Humira is a tnf and concentyx is not.

Does anyone understand and can explain the differences and benefits and risks in a simple way?

I am 47. And need to be able to work and support myself. There is no financial partner.

(I am typing on my phone keyboard w/out my reading glassss. Please forgive major typos.)

My rheumy didnt think the breathing issues were the humira. I did. Fyi.

Any guidance appreciated. I do feel swelling in other areas has been helped. Hip pain gone! Have had swelling in neck and head that is indescribable. Gone. So it does work in some places. But waking in such pain in my ribcage all the way around is very upsetting.

Has anyone else xperieneced this with humira? Did it get better if you continued? Did you switch to cocentyx? Before i started by SED was 52. I dunno where it is now.

Thank you , LaurenNyc

Last edited by laurenNYC; 05/12/18 02:40 PM.

laurenNyc , dx’d April 2018 AS, Hashimotos on Tirosent. Incorrectly dx’d fibro b4 AS dx. JUST WANT MY LIFE BACK!
Re: Worse pain with Humira? [Re: laurenNYC] #280366
05/14/18 05:05 PM
05/14/18 05:05 PM
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SouthernMoss Offline
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Originally Posted by laurenNYC
Does anyone understand and can explain the differences and benefits and risks in a simple way?


Humira is a TNF inhibitor, and Cosentyx is an IL-17 inhibitor.

From the Medications page of spondylitis.org:

"Both IL-17 and TNF-α are inflammatory cytokines (cell signaling molecules) that, as the name implies, signal to activate inflammation throughout the body, modulating or altering the immune system response. Inflammatory cytokines play an important role; however, when there is an overabundance of these, as has been described in inflammatory disease, they can cause harm to the body if left unchecked.

IL-17 and TNF-α cytokines signal to specific immune cells directing them to activate inflammation, with each cytokine being responsible for signaling to a different set of cells. IL-17 and TNF inhibitor medications work by targeting their respective cytokines, obstructing their signaling pathways, and by this mechanism seek to reduce inflammation. Since secukinumab* targets different cytokines than the TNF inhibitors, the hope is that this newer biologic medication will help those who haven’t responded well to the TNF inhibitors, or are not able to tolerate them.

Cosentyx carries similar risks of infections, and reduced ability to fight infections as the TNF inhibitors. It has also shown in clinical trials to exasperate inflammatory bowel disease in patients who have it, as well as bring on new cases of inflammatory bowel disease. "

*secukinumab is the generic name for Consentyx

Link to the Medications page: https://www.spondylitis.org/Medications


Last edited by SouthernMoss; 05/14/18 05:26 PM.

Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic
Re: Worse pain with Humira? [Re: laurenNYC] #280367
05/14/18 05:21 PM
05/14/18 05:21 PM
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SouthernMoss Offline
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If you are concerned about Cosentyx, you might ask your rheumy about Enbrel. Like Humira, Enbrel is a TNF inhibitor. But the mechanism is different. Humira is a monoclonal antibody, whereas Enbrel is a dimeric fusion protein. I don't fully understand those terms, but your rheumy does and can tell you whether he/she thinks Enbrel would be a candidate.

I take Humira, but I've never had ribcage pain because of it, so I can't offer any information. To the contrary, I was having some breastbone/rib pain before Humira and Humira made it better.


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic
Re: Worse pain with Humira? [Re: laurenNYC] #280369
05/14/18 07:01 PM
05/14/18 07:01 PM
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laurenNYC Offline OP
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Wow. i had no idea there were differences. Thank you for informing me. Guess time to do more research! Thank you so much!


laurenNyc , dx’d April 2018 AS, Hashimotos on Tirosent. Incorrectly dx’d fibro b4 AS dx. JUST WANT MY LIFE BACK!
Re: Worse pain with Humira? [Re: SouthernMoss] #280371
05/14/18 09:14 PM
05/14/18 09:14 PM
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seymour Online
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Originally Posted by SouthernMoss
If you are concerned about Cosentyx, you might ask your rheumy about Enbrel. Like Humira, Enbrel is a TNF inhibitor. But the mechanism is different. Humira is a monoclonal antibody, whereas Enbrel is a dimeric fusion protein. I don't fully understand those terms, but your rheumy does and can tell you whether he/she thinks Enbrel would be a candidate.

I take Humira, but I've never had ribcage pain because of it, so I can't offer any information. To the contrary, I was having some breastbone/rib pain before Humira and Humira made it better.


Is Enbrel the only dimeric fusion protein one?

Re: Worse pain with Humira? [Re: laurenNYC] #280372
05/14/18 09:34 PM
05/14/18 09:34 PM
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Winston Offline
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Yes, I believe Enbrel is the only commercially-available TNF-receptor fusion protein. It does work differently from the other TNF inhibitors, which are mostly monoclonal antibody drugs. The fact that it's a fusion protein explains why Enbrel is ineffective (and thus not approved) for treating uveitis and irritable bowel disease. I don't understand the science either, but there are lots of articles on the Internet that explain it if you're interested.


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