Your Biologic Isn’t Working: Is It Time To Switch?
How do you know your biologic isn’t working? [Pub Dec 10, 2021. Updated Oct 2024]
I’ve learned the hard way that my biologic isn’t working many times. The first time it happened, I didn’t know it at the time.
But the day I started a flare on August 5, 2021 was the day I should’ve suspected that my inflammatory arthritis injections might not be doing the job. My meds stop working so fast, it’s always a shock.
My arthritis is so aggressive and difficult to treat that my rheumy decided in December 2023 to move me to a biologic swapping/switching plan. This requires me to switch meds every six months to stay ahead of the disease. I’m losing hope that meds will work for me. I’ve burned through NINE biologics in three short years. Each med burned out fast. Here’s a timeline of my biologics adventure:
- Nov 2018 – Dec 2021: Enbrel
- Dec 10, 2021 – Started Humira
- Humira failed on Mar 8, 2022. I spent all of 2022 bedridden and unable to walk or bend my arms.
- April 2, 2022: Cosentyx
- Oct 2022: Taltz carried me through to Dec 2023.
- Then I got an bacterial and viral co-infection and had to stop everything.
- In late Jan 2024, we went back to Enbrel and Humira to see if they helped while we waited for new coverage to come through.
- That’s when pustular psoriasis, allergies, and hives went into overdrive and I’ve not been able to get any of it under control since.
- Feb 2024: I started Simponi
- Sept 2024: Simponi failed so I tried Olumiant until my new coverage came in.
- Now here I am in Oct 2024 on Rinvoq.
What happens when there are no more meds to try? I have no idea.
In September 2024, we determined that anti-TNF meds don’t work. This was on my list of questions to ask me as it felt to me that anti-TNFs simply weren’t effective. My rheumy confirmed it before I had a chance to ask. Oddly it was reassuring to hear that his thought process is the same as mine.
Anti-TNF meds have also resulted in pustular lesions and hive outbreaks that I can’t control. The skin pain is even more painful than my psoriasis. I find this odd, because I didn’t experience that with Enbrel when I started in 2018. Ironically, nothing has lasted as long as Enbrel either and now I can’t tolerate it at all.
It has been a brutal three years.
Each time my biologic stopped working, the warning signs were clear as a bell.
Yet I was still caught by surprise. After all, patients never expect medications to stop working so fast! But when medications like biologics stop working, my experience is that there is next to no warning. One morning you’re fine and the next day you’re not.
In December 2023, I went for a short walk to the shop. The very next day I couldn’t stand or walk due to gobs of inflammation in my joints, especially my knees.
When my arthritis medications stop working, I still tend to blame fibromyalgia or MECFS because they are the culprits behind most days of malaise. With fibro and ME, it’s not uncommon for me to experience 300+ sick days a year. That means days when I’m sick enough that I can’t spend much time outside my home.
As weeks went by, I got worse. My legs had that filling up with cement feeling that means inflammation is back. I was stiff as a board. My arms hurt like crazy and it becomes hard to straighten my arms or pick things up. I lose grip strength in my hand. My body just stops working.
“Uh oh, that’s not good,’ I thought one night as I was trying to bring the swelling down. I’m the only person I know who lives with ice on her knees year-round.
Even more surprising was that I got exactly three years from Enbrel. The timing is odd and no one ever mentioned that I might only get three years! But no one has been able to explain the strange timing for when my biologics stop working either!
Why didn’t my Taipei doctor tell me any of this? (2018-2021)
Looking back on my experience with my Taipei rheumy, I can see now that it’s possible he didn’t know. He also seemed apathetic and didn’t care. My husband will back me up on this claim as he was with me at all appointments.
For example, my Taipei doctor told me inflammatory markers are high every time I see him. But my inflammatory markers are always high. They’re never within a normal range. He never mentioned they were higher than usual and I always had to ask him to pull up all my labs so I could look at them myself.
Compared to my current rheumy – who I privately call Doc BOSS – this is strange behavior.
Doc BOSS watches my labs like a hawk. He is always careful to explain everything to me.
By the end of September 2021, I had obvious symptoms that Taipei rheumy should’ve noticed based on the list of symptoms I gave him with each visit. Instead he kept blaming my new symptoms on my meds.
Meanwhile, these are clear signs your biologic isn’t working.
- More pain and pain in new places
- Joint swelling and increased stiffness
- Arthritis fatigue and increased dizziness
- Walking and getting up becomes much harder
I gave him the same list of increasing arthritis symptoms in October 2021. That’s when he casually suggested switching to a new biologic.
If I were in North America, my rheumy would’ve been direct. I know this because I’ve read countless stories about patients having to switch. ‘Your Psoriatic Arthritis symptoms are back and your biologic doesn’t seem to be controlling your worst symptoms. We need to make a decision.’
I also know this because Doc BOSS has said these words to me many times. He’s watching my labs and lets me know at every visit that they’re climbing, which suggests the meds aren’t working.
That’s how you know you’re with the right doc, by the way.
My Taipei rheumy even left the ‘choice’ to me. He wrote down a list of anti-TNF meds that are available in Taiwan and told me to ‘pick one as they are all more or less the same with the same side effects.‘
I pushed for more information about the options since I had spent $70,000 Canadian in cash in three years on meds that weren’t working. What does he recommend? Can you tell me about the side effects?
All patients would expect any doctor to take time to explain what is happening.
Your biologic isn’t working. What are the signs?
Here are some things I wish I had known that might benefit other patients.
First, it’s normal to need changes in your treatment plan. Second, the warning signs are always graphic:
- Legs and joints ‘filling up with cement’
- Hot, red swollen joints
- Bilateral joint swelling (both sides of the body)
- Increased fatigue and increased pain
- Stiff everywhere
- ‘standing on glass’
- Rash (psoriasis)
- Fever
- Unable to do basic day to day activities without extreme difficulty
- Harder to get out of bed
- Loss of hand and grip strength
- Mouth ulcers
- Rheumatoid nodules
- Vasculitis (spots on your skin that look like ulcers)
- Dry eyes and mouth or increased uveitis
If you’re noticing that you’re taking your injections and you’re experiencing worsening joint pain, stiffness, and swelling – that’s a red flag.
My worst symptoms disappeared when I started my first biologic in 2018. For example, it no longer felt like I was walking on crushed glass, but when that symptom came back – WOW! It was sudden.
Your meds aren’t helping
If your arthritis symptoms are back after being gone for a period of time, it’s probably safe to assume that your medications might not be working as well as they should be.
It’s normal for patients to hit a plateau with their medications. It’s also possible for patients to build up antibodies to their biologics which make the medication less effective.
Changes can be subtle. It’s important to track your symptoms and pay attention to the changes happening in your body.
You’re having an arthritis flare
I have a wicked combination of arthritis, fibromyalgia and MECFS. It’s hard to know the difference, but I’ve come to realize that almost all my flare activity is related to fibro and MECFS.
Enbrel was working well at keeping my stiff and swollen joints under control – until it wasn’t. When these types of symptoms start flaring up, tell your doctor asap.
You have new symptoms.
When swelling and stiffness starts showing up in new places, that’s a good sign that your arthritis is on the move again.
When a biologic isn’t working, it tends to happen fast
In my experience, when Enbrel stopped working, I can see now that it was noticeable.
The research I’ve done suggests that no one knows why a biologic stops working as well other than that your body builds up immunity to it. Some biologics help for a while and then they don’t work as well.
No one can say how quickly that might happen as every patient is different.
It can take some trial and error to find a biologic medication that works best for you
It’s important to pay close attention to what’s happening when you start your new medication. Most patients eventually find one that works. If it’s working properly, your symptoms – specifically pain, stiffness, inflammation, and fatigue – should start to slow down or fade away.
It might take 4 to 6 weeks or more for the new medication to start working
Some patients have reported that it can take 3 to 6 months for a new biologic to start working!
Your doctor should be prescribing other medications that work faster to help you through the hard times. They should also be paying attention to how you are adjusting to your new medication.
Apparently a lot of AS, RA, and PsA patients (the ones that I know) can fail a biologic within six months, so you need to be on the look-out for that as well. If your symptoms don’t improve, let your doc know. The goal is to find the right medication for you that works as quickly as possible.
After all, a timely treatment helps to protect your body from the ravages of diseases like Axial Spondyloarthritis and Psoriatic Arthritis.
What to do when you think your biologic isn’t working
Write down the symptoms you’re experiencing and give it to your doctor. Make sure they enter it in your medical records.
Tell your doctor if your ability to carry out everyday tasks like holding plates or glasses, using cutlery, or washing your hair, has become more difficult.
Check your blood test results and check them again!
These are great indicators if you compare them month to month.
How do you decide on the next one?
Your doctor should be guiding you through this most difficult question. If you’re not getting the support you need from your medical team, find another doctor. If finding another doctor isn’t an option, ask your local arthritis non profits and support groups. There’s a wealth of information there from patients who have gone through the same thing.
Finally, as a friendly reminder, don’t take medical advice from other patients, but do take their experience into consideration. Write down the most important comments and ask your doctor.
Keep in mind that I’m not a medical professional. My story is one of millions of different stories that can occur with Spondylitis. Nevertheless, I hope this post helped you!
Additional Resources:
- Frequency of Biologic Switching – The Lancet Rheumatology
- Treating Psoriasis: 5 Reasons to Consider Switching to a Biologic
- Getting Started with Biologics
You Might Also Be Interested In:
My Articles About Ankylosing Spondylitis and AxSpA
- Ankylosing Spondylitis Main Page – My Story – Diagnosis Feb 12 2009 – Feb 2024
- Visual Evidence of Inflammatory Arthritis: When The Invisible Becomes Visible (2024)
- Why Is It So Hard for Patients to Change Meds? – 9 Biologics Later… (2024)
- Chronic Illness Realness VS Masking What’s Really Happening (2023)
- It’s Disability Pride Month: I’m Not My Disability (2023)
- World AS Day 2023: How Life Lessons Prepare Us For Life With Arthritis (2023)
- The Great Inflammatory Arthritis Flare of 2022 (2023)
- AxSpa and Ankylosing Spondylitis Flares – What To Know (2022)
- Another Disabling Flare, Another Year in Bed (2022)
- What It Feels Like To Win Health Coverage in Taiwan (2022)
- My Fibromyalgia and Arthritis Flare Survival Kit(2016 – UPDATED FEB 2023)
- 8 Ways Chronic Pain Changes You (2022)
- 70 Facts About My Invisible Illness You Might Not Know (2015 – UPDATED FEB 2023)
- Your Biologic Stopped Working: Is It Time To Switch? (2021)
- What Happened When I Stopped Taking My Arthritis Medications (2020 – UPDATED FEB 2023)
- Costochondritis: Chest Wall Pain with Arthritis (2021 – UPDATED FEB 2023)
- Ankylosing Spondylitis – 10 Years After Diagnosis (2019 – UPDATED FEB 2023)
- Let’s Talk About Pain – September is Pain Awareness Month (2019 – UPDATED FEB 2023)
- Keeping It Real With Arthritis – Contributing Author (2022)
- Living with Ankylosing Spondylitis and Why We Must Keep Moving (2015 – UPDATED FEB 2023)
- World Arthritis Day (Oct 12) and Why It Matters To Me (October 12)
- BOOK REVIEW: Straight Talk On Spondylitis 4th Edition (2024)
Tips From A Veteran Patient About Living Successfully With Arthritis
- How Do I Describe Chronic Pain To My Doctor? (2021 – UPDATED FEB 2023)
- Pacing for Pain Management (2015 – UPDATED FEB 2023)
- Tips For Finding A New Rheumatologist (2022)
- Tips for Heat Sensitivity with Arthritis (2022)
- Tips for Living with Arthritis and Cold Weather (2023)
Arthritis Event Coverage – MEGA POSTS WITH AXSPA EXPERTS
- American College of Rheumatology Convergence Nov 2021 – 5 Things I Learned About Spondylitis (Nov 2021)
- SAA Global Spondyloarthritis Summit 2022 – Event Recap (May 2022)
- American College of Rheumatology Convergence Nov 2022 – Things I Learned About Spondyloarthritis (Nov 2022)
- ACR23 SpA Research for the Spondyloarthritis Community at the American College of Rheumatology Convergence in San Diego (November 2023)
- SAA 6th Annual Global SpA Spondy Summit 2024 – EVENT RECAP (May 2024)
Carrie
I’m a chronically ill and disabled Canadian writer, patient advocate, international businesswoman, artist, and lifelong geek at heart.I lived in Taiwan for 23 years before repatriating to Canada at the end of 2025. My Several Worlds began as a travel and expat blog, but over the years it has grown with me through chronic illness, disability awareness, advocacy, business ownership, systems change, and the messy business of rebuilding a life when your body and the world around you do not always cooperate.I’ve lived several lives in one body. I built a massive international recruiting business called Reach To Teach Recruiting, became a professional writer and patient advocate, and somehow ended up as a chronically ill systems nerd who gets wildly excited about websites, healthcare policy, research rabbit holes, cats, and whatever is blooming in my garden.I’ve also modeled in Canada, China, and Taiwan, including one very memorable Discover Taipei cover involving a pineapple, which I still consider peak expat achievement.I’m a bit of a jack of all trades and a self-professed autodidact. I love art, flower arranging, reading — which is an understatement if you’ve seen my Goodreads profile. I have a special place in my heart for science, technology, law, health and medicine, history, disability policy, and culture.Animal videos make me cry. I hate cooking. You can find me nerding out at home most of the time due to being mostly housebound. If I'm not engaged in one of the activities listed above, I'm probably building websites.Check my About page to learn why I’m taking you on this journey with me through My Several Worlds.
