My biologic isn’t working. 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.
At first I thought it was fibromyalgia or MECFS because they are the culprits behind almost all days of malaise. With fibro and ME, it’s not uncommon for me to experience 300+ sick days a year – days when I’m sick enough that I can’t spend much, if any, 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 and I was stiff as a board.
“Uh oh, that’s not good,’ I thought one night as I was trying to bring the swelling down. Having had my knees aspirated due to fluid build-up in 2009 and 2010, I’m not willing to repeat that experience again. Even with that experience, it NEVER occurred to me that my arthritis injections weren’t working.
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!
April 10, 2022 Update: I wrote this post on December 10, 2021 after starting my next biologic Humira. I found out I failed Humira on March 8, 2022 and have been bedridden and unable to walk since then. I started my third biologic Cosentyx on April 2, 2022. No changes since.
Why didn’t my doctor tell me this?
It’s because there isn’t much of an emphasis on doctor/patient relationships in Taiwan. I’ve experienced this with every doctor I’ve seen since 2009. It’s a prime example of the flaws in Taiwan’s healthcare system.
The information I get from my rheumatologist is scarce compared to what I read from patients in North America. The standard of care in Taiwan is low compared to what patients receive elsewhere.
For example, my doctor tells me inflammatory markers are a little 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 when I saw him in September.
By the end of September, I had obvious symptoms that he should’ve noticed based on the list of symptoms I gave him with each visit.
- More pain and pain in new places
- Joint swelling and increased stiffness
- Arthritis fatigue and increased dizziness
- Walking and getting up has become much harder
I gave him the same list in October. That’s when he casually suggested switching to a new biologic. He was blasé about it and anxious to get me out and move to the next patient.
Cultural differences with doctor-patient relationships are hard in Taiwan. Patients are always guessing what the doctor means and doctors don’t like to clarify or answer questions.
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.’
Instead, 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’.
Here’s the list:
I pushed for more information. What does he recommend? Can you tell me about the side effects?
Again, ‘They’re all the same with the same side effects. Pick one.‘
Naturally, that did not sit well with me. Especially that damn list! Not even a proper medication pamphlet!
I decided to ask my Spondylitis support groups to see what they had to say. They all thought this was BIZARRE. Why wouldn’t he be more thorough with me? These medications suppress your immune system. They can be deadly if you get an infection.
While I am a veteran patient, I expect, like any patient would, that my doctor would take the time to explain it. This is because WE need to make the best choice for my health.
Part of me wants to find a new rheumy, but the other side is saying that it’s just going to be the same as every other doctor I’m met here.
I had a great start to 2021. My step count was up. Everything was going well until July and then everything pooped out.
I’ve had very little input from my rheumatologist, but I am grateful for my support groups. Thanks to them, I was able to narrow down my choices. I settled on Humira on November 2nd, again with no input from my rheumy.
Anyways, I hope this little story has shown you what your doctor shouldn’t do! Thanks for letting me vent.
Let’s move on to the topic of switching biologics.
Your biologic isn’t working. What are the signs?
Here are some things I wish I had known that might benefit other patients, especially if you’re in Asia or Taiwan:
Treatment for inflammatory arthritis like Axial Spondyloarthritis or Psoriatic Arthritis is tricky. I’ve tried close to a dozen medications in the past 13 years since my diagnosis and what has worked for me in the past eventually stops working. It’s normal to need changes in your treatment plan.
Your inflammatory arthritis symptoms are back
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.
Enbrel did a good job of getting rid of my most severe disease symptoms until it didn’t.
My worst symptoms disappeared when I started 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.
My morning stiffness is more extreme; arthritis fatigue is more profound, and there was a huge shift in my mental health. In my heart, I was telling myself this wasn’t happening until I realized IT’S HAPPENING. I tried toughing it out for October and most of November, but when I broke down on my husband a few weeks ago, we realized things weren’t going to change. We needed to make the switch asap.
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. My blood tests are always high, but they have been higher than normal since August. That should’ve been the first clue that my doctor should’ve spotted right away.
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 and my story is one of millions of different stories that can occur with Spondylitis.
Frequency of Biologic Switching – The Lancet Rheumatology