January 28, 2021
While two people may have the same diagnosis for axial spondyloarthritis, they may have stark treatment recommendations from their healthcare team. Medication that may work for one person may cause someone else side effects or interact with medication for a comorbid condition. We have heard from our community and understand that finding the right treatment for you can be difficult. That's why we want to hear more from you with some questions to consider:
Anna Samson Moderator
2 days ago
I am currently having Inflectra (Remicade) infusions every 4 weeks. While I feel like it reduces the pain a bit, the relief only lasts for about a week and a half. So I spend more than half the month in gradually worsening pain. Along with the infusions, I take Lyrica (Pregabalin) 3 times a day for my Fibromyalgia. I also use heating pads throughout most of the day and my TENS unit on worse pain days. I try to stretch and do yoga
I have been having the Inflectra infusions for a year now and am frustrated with the lack of improvement of my pain. My fatigue continues to be debilitating and I spend more time resting than anything else. I am hoping to start on a different biologic or other treatment that helps me more effectively.
Before starting on Inflectra, I cycled through most of the available NSAIDs and they caused a painful UTI that lasted for a month and only got better once I stopped the NSAIDs. Because of this, and the lack of pain relief, my rheumatologist began me on Inflectra and prescribed Lyrica about 6 months ago. So my treatment has only changed a couple of times, but I am hoping to switch to something other than Inflectra since it is not helping as much as I need it to.
Hope y'all are doing well!
Rebecca Cappello Moderator
July 12, 2021
Hey there community!
My treatment plan consists of a biological medication Remicade that is infused at the rheumatology office every 6 weeks. I also treat my breakthrough pain with tramadol, diclofenac, Tumeric combination, vitamins, folic acid, magnesium, muscle relaxants, steroids, and a collagen peptide powder in my coffee every morning. I also try and incorporate movement (yoga, bike, stretching, walking) every day to help with the stiffness and rigid muscles that recur nightly, as well as use massagers, TENS unit, hot baths and cold compresses with extreme or exhausting body pain.
Utilizing this treatment plan, I feel better, but not fully without pain or fatigue. I find I can get temporary relief with alternative therapies when all seems too much. It is a daily struggle. Some days I wake and have no energy and find I do very little. Some days, I feel better and accomplish some tasks that have been waiting to be done. It's all very up in the air. I live day to day depending on how I feel and the level of disease activity.
I've been on a treatment plan for the last 5 years, and have been on several biologics medications. Before bio's, I used anti-inflammatories that eventually failed to help my level of pain. Some therapeutic techniques also stopped helping and actually made things worse and put to the side for now. I've had several surgeries and currently only manage pain daily. It never goes away fully. I've had to change my treatment plan at least twice a year, as trials of biologics either failed or worked only partially to give me relief. It has taken me quite a while to find the best plan of action but it's worth it. I have a better QOL and am grateful. Be well everyone!
Julie Vallortigara Moderator
February 1, 2021
Hello lovely community,
Well I have been diagnosed with AxSpa few years ago in France and the specialist I saw told me I should take anti-TNF for it (biologics). But it doesn't work like that in the UK (where I live). You have to fail two DMARD before being put on biologics. So I did try, and failed two DMARDs, the second one quite badly as I ended up in hospital with neutropenia (basically very low immune blood cells level).
After that, I was put on Embrel (etanercept), my first biologics, which worked really well but I had an allergic reaction to the drug. So I had to stop and switched to Humira. I have been taking Humira for six years now and I am lucky to say that it still works!
Two years ago I managed to spread out the injections, after a discussion with my rheumatologists, as I was in remission with my symptoms of AxSpa for a while. I can manage to inject less today, and maybe one day I will be able to live without injection...?
Aside of that treatment, I have been taking for around five years now a drug for neuropathic pain and to help to have a good quality of sleep. It's called Amitriptyline and it has provided me some pain relief during the day and restful nights. I also take paracetamol every day for the pain and it works well for me. These medications have been recommended to me by specialists in rheumatology. I feel my pain is overall controlled.
I do a lot of self-management of course: weekly yoga, pilates, physiotherapy sessions and stretches, daily walks and regular meditation. I take hot bath with epsom salts and also massage tender areas. I tend to use natural products for body massage like arnica, tiger balm, cream with essential oils.
I think I feel in control with this treatment plan. But I will revise it regularly, as I have done in the past, as research on treatments and management evolves so as my condition and my symptoms. I hope this helps!
Thank you and take care.
Lisa Marie Basile Moderator
January 29, 2021
Hi everyone! Was diagnosed with AS a few years ago, and pretty much started on Humira right away. Sadly it did not work, I got shingles and other illnesses, and came off of it. Then I lost my insurance (in the US here) so I was on diclofenac but frankly, it was not very helpful and caused more issues than it was worth (like I couldn't mix it with other nsaids for acute pain).
Right now I am managing with meditation (stress is a big for me), movement (daily stretching and exercise), nutrition, lifestyle changes (less alcohol, more sleep, change of job, etc). But I am thinking Cosentyx is next.
I feel frustrated about insurance in this country, and I'm scared of going on biologics again but I know I'll probably need to.
My pain/fatigue is extremely dynamic — some weeks/months are very good and some are horrific. I've yet to figure out exactly what triggers it, but I'm working on it.
I'd love to hear about everyone else!