Reducing Medication Intake Is My Agenda Whilst Living With AxSpa
Last updated: November 2023
After my diagnosis I visited doctors to seek advice, discuss treatment recommendations, and find ways to cope with AxSpa symptoms. From the start, I have always had in mind to keep my prescribed medication to a minimum. I am not against it; I believe in taking an effective treatment to improve my quality of life and tackle the progression of the disease.
Starting off on meds
Being diagnosed with non-radiographic AxSpa, so not showing signs of changes or damage to my joints, I have considered biologics as an opportunity to try to control the progression and keep myself away from fusion. Yet, from day one, there’s something I don’t like about taking repeated medication, even more when it involves taking tablets every day. Though I had to do it, starting with anti-inflammatory drugs, until I was put on biologics. Then, I was diagnosed with fibromyalgia, and although the biologic works wonders on me, I was living with daily pain and fatigue, and building sleep backlog. So, I started taking prescribed medications to sleep better and lower my pain and fatigue.
Trying to go off my biologic
I have tried to stop my tablets before; I even tried to stop my biologics at some point when I was in remission with my symptoms. I did not succeed at the time, despite my determination to do it. I planned it and discussed it with my doctors, and I picked summertime as it’s an easier season pain wise. Never mind, at least I got my answer then that I still needed my medication. From that trial, I managed to identify the dose that was good enough for me so since then, I have been taking my dose every three weeks instead of two, and that’s already a progress for me. My consultant said that we could try again in the future and see if I could live without biologics.
Searching for alternative treatments
Aside from that treatment, I was still taking tablets and did not manage to stop them either. I did not increase the dose over the years, which is good. Though I carried on searching for ways to cope better with my symptoms. I was keen to look into any alternative medicine and ways to heal myself. I did share recently my will and holistic approach in order to heal myself.
This is a process, looking at the big picture of my life with AxSpa and identifying which parts of myself have been damaged along the way and how I could heal these. Now I am thrilled to say that it’s been two months since I stopped any tablets, and I am coping well so far! I have talked to physiotherapist, occupational therapist, and my GP about it to get advice and support from them.
I went to acupuncture sessions which were very helpful and set me on the path to feel supported in stopping my tablets and manage my pain and fatigue differently. Again, I picked a good time to do it, between Spring and Summer when the weather is more kind to my body. Still, I have been working a lot lately, and I went on holiday in a campervan, out of my comfort zone, and I am feeling fine. I have had episodes of pain and fatigue, and found ways to push it through these, distract my mind from it and keep moving and spend time self-caring.
I am confident this time will be a success for me
It would be amazing to live without taking these tablets in the long run. I am happy to be only taking my biologic and then forget about medication in between injections. I keep in mind that when fall will come, with cold and damp weather it might be a different story.
However, I have time to prepare for this so I am not taken by surprise and I have thought about how to cope with some symptoms when they arise. I wrote the first draft of this article on the International Self-Care Day! I definitively take that as a sign of investing time and resources in developing further my self-care approach is the way forward to carry on making progress and take less medication if possible.
Have you tried to stop your medication when in remission? Have your managed to reduce your medication intake and still cope with your symptoms? Please share your experience below 😊
Do you notice worsening flares in colder weather?