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Failed with all biologics
#283667 10/16/19 03:48 PM
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Its been a rough road and right now being in a really bad spot I guess Im just reaching out to see if anyone else is in this boat. Not that I wish it upon anyone, but it would be comforting to know Im not alone in this case.

Over the course of four years i've tried
Humira, Cosentyx, Cimzia, and Stelara and Simponi.

Long story short each had varying degrees of effectiveness with Simponi being the most effective.
Humira may have led to cardiac issues. Worked decently for symptoms
Cosentyx led to significant weight loss and extreme malaise. Worked minor for symptoms
Cimzia was not effective and I began to have uveitis while on it. It also caused this extreme burning in my legs
Got Colitis for the first time while on stelara( some docs say it was a side effect from the stelara) either way I've never had it before or any other GI issues. But the decision was made to discontinue.

Simponi was hands down the most effective but the "hangover" was so extreme
The best way I can describe it is like the hangover you have from waking up after general anesthesia. It was the most bizarre scenario. The "hangover" would literally pop up out of nowhere and just hang for a few hours and then just disappear. It would happen in extreme episodes rather than a constant, but it was a daily occurrence.

All the meantime my bloodwork was mostly within normal limits.

After running through all these options over four years, Im currently not taking any biologic. While my pain has increased pretty well, Im physically feeling dramatically better. My energy is up, my brain isnt foggy, I dont feel sick. Yes Im in a fair amount of constant pain, but its much easier to deal with than the prior side effects.

Looking back though I cant describe how depressed I feel knowing what I've tried an how it all failed. A lot of work and gutting it out went into it to end up back where I started.

Has anyone else been through a similar road where they failed with the biologics. Or dealt with a hangover like feeling from any of these meds.


diagnosed at 32.
HLA B27 Positive
Currently on Simponi, Tramadol, and celebrex
Re: Failed with all biologics
awesomeman #283672 10/18/19 12:35 AM
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Well I can say for sure that I am here for you. I've been on Remicade without problems however the AS itself has been a constant companion with multiple eye surgeries and cardiac events...no picnic...

Glad that even though the pain is present that it's tolerable and you do feel better....You are clearly strong. good to know you.


Diagnosed 2001 after years of joint pain. Remicade started 2002 - 5mg/kg every 7 weeks.
Right Eye Iritis.Trabeculectomy/lens replacement 2006 > DSEK Cornea Transplant 2009.
>Ahmed Shunt 2016 >DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. Radio Frequency Ablation 2008.
Angina and stent placement 9/2020

ICU RN - Seattle, WA
~Grasp The Challenge and Succeed~
Re: Failed with all biologics
awesomeman #283683 10/24/19 05:38 PM
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I too have not seen any benefit from biologics. My blood has been normal since I was first diagnosed. I keep taking Cosyntex to hopefully keep inflammation down. I’m probably gonna quit just to see if it goes back up. Not sure why my blood work continues to be normal when I continue to hurt all over, feel sick so much of the time and have heavy fatigue.

Re: Failed with all biologics
Pain24x6 #283684 10/25/19 01:07 PM
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Pain24x6, I'm not sure if you have an AS diagnosis, but if you do, it's not uncommon in AS for bloodwork to be normal. In 30-50% of cases (depending on which doctor you're listening to or study you're reading) AS-related inflammation will not show up in bloodwork. This is because AS primarily attacks a type of connective tissue called entheses that isn't particularly vascular (I think it's called "avascular" in medicine). So the inflammation is there but evidence of it is not circulating in the bloodstream.

Re: Failed with all biologics
Pain24x6 #283685 10/25/19 06:38 PM
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Originally Posted by Pain24x6
I too have not seen any benefit from biologics. My blood has been normal since I was first diagnosed. I keep taking Cosyntex to hopefully keep inflammation down. I’m probably gonna quit just to see if it goes back up. Not sure why my blood work continues to be normal when I continue to hurt all over, feel sick so much of the time and have heavy fatigue.


I'm diagnosed AS by MRI and blood test HLA b27.

My inflammation markers were normal. Yet my pain was once at a level 7-10. You can see the inflammation in the MRI and through x-ray as well yet just like you my blood work is fine. I too suffered from extreme fatigue.

If you like some help reach out to me. I stayed off biologics as I never wanted it to go on them so after 5 years of my own research I got it figured out. My pain sits at of level of 1-2 daily and some some days during the week I'm almost at no pain.

Re: Failed with all biologics
awesomeman #283863 12/23/19 12:31 PM
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I am like you. I went through all the biologics and nothing works well. I think my body quickly adapts to medicines and renders them ineffective quickly (Just my opinion). I have tried them all. I stay on Enbrel just to have something in my system to prevent progression of the disease but it doesn't help much with the symptoms. So I am in pain as well 24x7 so I use a combination of steroids and pain killers to get through the day. I am the primary earner for my house as I have an MBA so I have to pump myself with drugs to make it through the day. Plus I refuse to go on disability I will lose my mind - it's just a personal choice. So when things get bad I do a medrol dose pack (steriods) as needed and use pain killers to keep the pain at bay so I can focus at work. I take Enbrel and have tried everything else you can imagine with little success.

I understand where you are coming from as I believe there is a group of people in which biologics don't work. I was contacted by a study group and they were trying a new drug that was specifically designed for people who didn't respond to biologics so I know it's true. I refused because I couldn't risk being put in the control group and dying for 3 months.


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