How I Knew Humira Wasn’t For Me

By Steff Di Pardo

2 min read

I was on Humira for 6 and a half months. I knew I should give it around 6 months to be completely sure if it was working for me or not. Turns out, it isn’t the drug for me, and it took a trip out of the house to be 100% sure about that.

The beginning

When I first started Humira I was hopeful. I’d heard so many good things about it, so I asked my rheumatologist to be put on it. I was previously on Inflectra (a Remicade biosimilar), but fatigue started to hit me and that’s when I decided that I wanted off of it. Little did I know the fatigue I’d experience on Humira would be a lot worse.

I did my first few injections and things were looking up. In May I was able to go for a bike ride and get up at a reasonable time one weekend. I took this as a good sign and remained hopeful. Those good days were few and far between.

During Humira treatment

Over the months, I started to realize that my pain was getting worse and so was my fatigue. I didn’t want to freak out, so I just kept a level head and told myself that sometimes these drugs take time.

Flare-ups were more often on Humira than when I was on Inflectra. I had more cane days than I’d had since before I was even diagnosed. My fatigue was another story.

I would be exhausted if I did anything remotely active. I could barely do yoga anymore and when I did, the next day I would be so fatigued that I could barely move. This is when I knew something wasn’t right.

What made me realize Humira wasn’t working

I decided to go downtown for a day with my friend. We walked quite a bit, but usually, when I go downtown I tend to walk more. When I was on Inflectra it allowed me to go on day trips and occasionally be more active, so I thought that maybe Humira would do the same for me. I was very wrong.

On the walk back to the car, the day started to really hit me. My feet were hurting, my back was hurting, and I was feeling the fatigue set in. I was wiped.

Once we got back into the car, everything hurt. I felt nauseous and exhausted, and I was in so much pain. When I got home I went immediately to bed and stayed there for the rest of the night.

Over the weekend is when it hit me. Humira was not working for me. My body was heavy and I was in a tremendous amount of pain. I needed my cane for 2 straight days, which isn’t like me.

It wasn’t until my mom made a comment about how I used to be able to do day trips that I noticed what was happening.

Next steps

It’s incredibly disheartening to realize that a drug isn’t working for you. A lot of what people with chronic illnesses go through is trial and error, and this was a perfect example. I tried a drug, it wasn’t for me, and onto the next one, I guess.

How many drugs have you tried for your AS?

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MICHAEL 7500 Member
AT 70 IM DOING WELL,A.S. FOR 52 YEARS IV HAD MY SHARE OF PAIN AND MISERY BUT IM A TOUGH OLD BASTARD AND I KEEP GOING AS LONG AS THE GOOD LORD LETS ME, THIS LIFE CAN THROW SOME TERRIBLE THINGS AT PEOPLE SO DONT FEEL SORRY FOR YOURSELF,FIND A GOOD RHEUMY,PICK YOURSELF UP AND GET ON WITH LIFE A.S. BE DAMMED.
MICHAEL 7500 Member
WE HAVE COME A LONG WAY IN THE TREATMENT OF A.S. BUT SO FAR TO GO I BELIEVE THE KEY IS TO SOME HOW BE ABLE TO IDENTIFY AT BIRTH WHO IS SUSEPTIBLE TO THESE RHEUMATIC DISEASES AND STOP WHAT EVER ACTIVATES IT,MORE RESEARCH IS NEEDED.
1. anthony.carrone Community Admin
 <inline-mention username="MICHAEL 7500" user-id="3256264"/> - More research, indeed! Thanks for sharing your thoughts and being an active member of the commnity, Michael! How have you been doing lately? -Anthony (Team Member)
crbusman Member
They put me on Plaquenil (hydroxychloroquine!!!!) before they had an actual diagnosis, and I didn't know any difference at all. Then, after back surgery revealed my L4-L5 had self-fused, they diagnosed me with AS and started me on Humira. I don't remember any terrible side effects from Humira, but I do know it didn't work, so after a year they switched me to methotrexate, which did actually help the pain more (now that I have 3 levels self-fused, most of my pain is in my peripheral joints, which MTX is better at helping). After maybe 6-8 months on only MTX, I wasn't feeling any relief any more, so they stopped the MTX and started Enbrel. I can truly say that it has worked well for me (although who knows if it will actually prevent any further fusion, until it does, or doesn't, happen?!?). I know it's helping because I recently got a new rheum and she wanted me to trial a period off of it, and after 2 weeks I was in so much more pain that I had to resume taking it. About a year ago they also added methotrexate back to the Enbrel regimen, and THAT was finally the relief I needed. So, fingers crossed that it'll continue to work well for me and my liver will tolerate it!
bobinflorida Member
Steff, thanks for posting this. I'm a lot older than you (81) and AS hit me when I was 23 - back then they didnd't know what it was - was officially diagnost until 1999. The first thing they did was put my on Humira, and like you I got worse and had to stop after a year. Arava came next - same thing. Metheltrexate next - after a year it became toxic to my system and had to stop. For the last year my Doc insisted I get on Cosentyx - I can tolerate okay, but it does nothing for my pain. It has, however, helped to keep my inflmmation down, so that's something. Pain Management came next, and that's where I am getting shots that work, then they don't. So, don't dispair, just keep trying and you never know if your Doc will recommend something that brings relief. For me, it's keeping busy like the Energize Bunny, pain and all. One foot in front of the other, day by day. Good luck. @
MICHAEL 7500 Member
THIS A.S. ROAD IS NOT EASY,DIAGNOSED 52 YEARS AGO,CURRENTLY ON HUMIRA AND DOING OK,JUST KEEP MOVING WILL ALWAYS HAVE ACHES AND PAINS BUT I TRY TO STAY POSITVE AND MOVE FORWARD, MY HEART GOES OUT TO THOSE IN PAIN GOD BLESS YOU ALL.
CutterJim Member
I had the same experience with Humira, overwhelming fatigue. I quit after 2 shots. I was on Enbrel for about 9 months. It helped with daytime pain but not pain at night so much, which is worse and more frequent. Weirdly, Enbrel also seemed to trigger Covid-19 relapses every week within a day or so of taking it. So, I stopped it, too. The Covid relapses have indeed eased up in frequency and severity. The effect was pretty much immediate. Now, I am on Simponi. I've only had one infusion, but I seem to be tolerating it fine so far. We're also going to Mexico to try stem cell therapy to see if that helps. There's some promising anecdotal accounts of it being of significant benefit, so we'll see.
Ali Long Moderator & Contributor
Hey <inline-mention username="Steff Di Pardo" user-id="2397373"/>! Well done for sharing this article. I think its very important to highlight that it takes time to find the right medication. It is also important to highlight the feelings that come with trying new meds and meds that do not work for you. I can completely relate to this article. I am now on my second biologic. I was on Cimzia first, I was so hopeful that it would work. It didn't. I had terrible side effects with minimal improvements. When I knew that this wasnt the drug for me I felt so dissapointed and disheartened. I thought that was it for me, that I would never find something to help me. I was distraught and angry. I know that with these drugs there is a lot of trial and error needed to find the one that works for you. But it is so hard trying a drug that doesnt work for you. I felt so frustrated. Luckily, I am on my second biologic now, cosentyx, and it is working for me. I hope your new biologic works for you! Ali (Moderator).
Lawrence Rick Phillips Moderator & Contributor
 I have used 5 biologic medications and 3 Dmards. Actually 4 if we count the two versions of methotrexate. So I have used Remicaid - 7 years. Orencia (remember I also have RA) 2 years, Actemera - 1.5 years, Cimsia - 1 years, Simponi - 6 months, Rituxan 9 years. Dmard's: Methotrexate pills - 7 years Sulfasalazine - 3 years Leflunomide - 2 years Methotrexate injections 9 years So which did I like best? Remicide was the best one until it really was not. Rituxan has been a good medication for me. Rick - moderator

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