Today I thought I’d write a quick little update on my Mom with Ankylosing Spondylitis journey! Because in a few weeks, I’ll be a Mom with Ankylosing Spondylitis starting Biologics and I’ll share how that journey goes.
I’ll link to my previous articles here, but I was diagnosed with AS six months ago, though I’ve been suffering from symptoms of ankylosing spondylitis for about 15 years now (since my 20s.)
What is it like being a young adult with ankylosing spondylitis? well, in Uni I had massive problems with Sciatica to the point where I had trouble sitting down to write papers, study, etc. I also always questioned whether there was something wrong with my energy levels, which always seemed to be lower than other peoples’ and I had some nasty pain flare ups in my low back, which I always thought were because I ‘twisted it’ or overdid it at the gym.
Fast forward to 2018 and I had an MRI on my spine which revealed widespread inflammation, degenerative changes and then an X-Ray which revealed sacroillitis (again, I had attributed my Si joint problems to a desk job and having 3 kids in 5 years!)
My ankylosing spondylitis treatment began with sulfasalazine and then celebrex, neither of which made any impact on the symptoms, so I have decided with my rheumatologist to go onto biologics for ankylosing spondylitis. I had a choice from four or five different biologic therapies that work on TNF and I chose Simponi.
I begin biologics treatment (a monthly injection) in February and I am told it takes about 3 months to feel effects from the medication. Biologics, at their simplest, help reduce the chronic, systemic inflammation (and fatigue and pain associated with it.)
It’s very easy to get caught up in the many different brand names of biologics, but in all honesty, I trusted my rheumatologist as they all have similar pathways. We laid each one out on a table, talked about pros and cons and it was a process of elimination. I knew I’d want something that was just a once a month injection rather than bi-weekly which reduced my options down (and made the decision easy.)
I’m actually in a pretty bad AS flare at the moment, being back at a desk only 2 days a week, and after taking a fall toboganning with my kids – I’m definitely noticing the flares becoming more severe with age (I truly feel old at 36 lol) and so I’m very ready to start biologic therapy for ankylosing spondylitis.
I am told I am part of a small demographic, as the disease mostly affects men, and here I am, a mom of 3 young children with it, but aside from that I am a very typical case. The only other differing factor is that I did not test positive for HLA-B27, a gene that is commonly implicated in those with AS.
As I go through this journey and hopefully put things in remission (I truly believe I can get there) I’ll be blogging and vlogging along the way! I’ve recorded a few vlogs on ankylosing spondylitis on youtube so far, and you can view them all on my ankylosing spondylitis youtube playlist here:
I had a call from the BioAdvance Program through Janssen today, and my patient support person is absolutely lovely. As I begin biologics, I’ll be having a nurse coming to my home for the first administration and my patient support person is taking care of all of the paperwork that goes through my rheumatologist and insurance companies. At $2000 a month for this treatment ($24,000 a year, this disease is no joke) I am very, very thankful to have medical coverage, and find myself thinking about people, es pecially in the US who do not have coverage for this disease which truly affects your lifestyle on so many levels. Over the past few months I’ve had to just mentally push through high pain levels, days where my mobility is limited, and of course, massive exhaustion which leaves me having to take afternoon naps almost every day that I am not at work, just so I can get through the evening. I find that AS has left me with planning my day in 1/3s, morning, early afternoon and evening. Sounds crazy to say that, but on a positive note, with three young children it’s been totally okay to embrace and manage it when I am at home, as I nap when my two youngest nap in the afternoon (my eldest is in school.) At work I just rely on a lot of coffee, which I am very thankful for these days. 😉
If you are a fellow mama with AS, please say hi in the comments and I would LOVE to know how you manage your symptoms, especially the fatigue / exhaustion at work, or when you are at home with the kids.
Don’t forget to check out the Youtube vlogs – I often feel alone in that I am a female 30 something with AS *and* a mom *and* I try to take on a positive, progressive attitude. One thing I found in my journey is that there are a lot of groups that are quite negative. I am passionate about thriving despite AS and not letting it become me, only a part of me. I see many people whose lives are overtaken by the disease, especially on facebook groups and forums, so I am trying to steer away from places that don’t serve me in my goals to get into remission or manage the symptoms. Hope you see it the same way! xo Carina