My Attempt to Stop My Medication
In 2018, I spent one month in France without my medication. Of course, it wasn’t planned... I left the UK in the hurry, as my dear grandmother was admitted to hospital, and she was going down ill. I packed a small suitcase with few clothes and flew down to Bordeaux. It was surreal to be there, with the effervescence of the Football World Cup and France making to the finale! Being in the family of great football supporters, my grandma included, in a way I was happy to be there. Yet I knew I was coming to say goodbye to my grandma, one of my closest relatives for sure. She passed that summer, and it was very hard for me.
But here I want to talk about how that summer I got the idea that I could live without my medication. Basically, I spent four weeks in Bordeaux, with a sunny and warm weather as you would expect there. And I did not miss my treatment. I felt fine, I was not in pain, I was physically active during the whole month, and I came back to London physically sound, not needing my injection. So, I started to wonder if I needed my treatment anymore. I thought it was a fair question, three years after starting Humira and being told by my rheumatologist that I was in remission with my AxSpa symptoms. And if I did not try to stop it, I would not know how much I need it, or how active my condition was few years after my diagnosis.
My rheumatologist was supportive
You must understand that my background as a scientist, and my willingness to reduce my medication to the minimum, played a role in wanting to find out if I could live without taking any medication. I had to know, particularly after my experience in France being off medication for four weeks. Therefore, I discussed that with my rheumatologist, and, I was happily surprised by his approach, being supportive with my idea to stop Humira and see what happens.
And I got their advice
So, my rheumatologist advised me on how to do it, to gradually space out the injections instead of stopping them at once. I would then be able to monitor my symptoms regularly and carry on with my plan or not. I started in Autumn 2018 to space out my injections to every three weeks (instead of every two weeks).
I felt fine so I spaced my injections out more, to every month in April 2019. I then went to see another rheumatologist, one of the experts on AxSpa in the UK. He was also supportive of my approach and gave me similar advice about the way to space out the injections. He said that if I was feeling fine with injections every 6 weeks for a couple of months, I should then stop the drug completely. I reached that point in Summer 2019, one year after being in France without my medication. In October that year, I stopped my medication and I felt fine and confident that it will last.
Well, it didn’t last
After two months of being completely off the biologic, I had a flare in my knee, at the same place, in the same way as when, years ago, AxSpa broke in and made home in my body! I was amazed of how it manifested again. The main change was my reaction to it: I did not panic, I did not crumble, I knew what it was, and I took care of it. I was not devastated; I did my little experiment, and I had my answer. I understood that I cannot live without my treatment, and I learned that I am better equipped to deal with my symptoms. I was back on Humira beginning of 2020, I am still on it and it’s still working.
My purpose here is not to promote any self-decision on medication such as biologics, any change or cessation of prescription without talking to a healthcare professional about it. I just wanted to share my experience and say that I have no regret doing it. I needed an answer, and I was supported by my doctors in doing my own "one person trial." Since then, I have changed rheumatologist and she was interested in hearing this story. Her reflection was that because it did not work the first time doesn’t mean it won’t work next time. I will keep you posted...