u/Ashnicobell

Starting a Jak inhibitor (similar to a biologic) a year ago once diagnosed helped me to identify that it was not age/posture/genetics (they weren’t thinking of HLA B27) as I had been told for 15-20+ years, what was actually due to AS and what was likely due to hEDS (hyper mobility, diagnosed at the same time) by what the Jak did and didn’t help.

So much seems to be focused on the SI joints, pre diagnosis and treatment I thought my neck and other lower back issues where due to age/posture/genetics as I had been told for so long, 46 at diagnosis. With a good and rapid response to the Jak, and digging online for my specific issues, I realised otherwise.

I also realised the TMJ (jaw), pulling muscles stupidly easily and swollen glands is an AS thing.

Later while I knew I had mechanical damage, the Jak gave me a very clear view decreasing my sciatica and lower back pain by maybe half, no more drop foot or swelling and lesser restriction. I still had it in my head for a long time these issues were due to mechanical damage - bone/joint damage, disc movement and extra growth - which wasn’t wrong, but it took me awhile to get my head around the mechanical damage being due to undiagnosed and untreated AS.

I’ve had a week of tapering and now a week off my Jak due to upcoming back surgery. The lower back issues have amped up which I was expecting. My jaw has become tight already, my neck is okay so far but for a bit more clicking.

I’ve been surprised by my sunlight sensitivity (vision) which I had for a long time before the Jak. I had completely forgotten about it. I had forgotten the bed pain too. The insomnia is back, due to some pain but it’s not at the level it was, so I imagine it’s stress too atm.

The level of clumsiness is pretty amazing. 4-6+ incidents a day of dropping things, missing distance etc. I seem to have lost a lot of coordination, this is in addition to the movement issues from AS restriction (like turning and my feet don’t follow). I’ve know this to be due to hEDS (hyper mobility) and am aware that immunosuppressants don’t affect it. It has to be coincidental or due to other factors but I find it so strange that it’s increased so much and so quickly.

A year on from learning of AS and a further year diagnosed, I am still learning about AS and how it affects me. And for me, I am just so thankful that I have good medical folk now and can access biologics/jaks and surgery when needed. I’ll be getting back on the meds as soon as recovery is sorted.

Has anyone else learnt more things about their AS too?

I’m not sure if everyone is aware, but biologics/Jak inhibitors are meant to slow or stop progression, they are for managing the disease and often don’t ‘fix’ everything.

Leading up to diagnosis (2 years ago) I had read, and a rheumatologist had mentioned, that a 60% improvement through use of a biologic/Jak was considered to be successful. And that this disease can only be managed, not cured. I am thankful that I got my head around this early on. 

I had a look online again - what level of improvement from biologics for Ankylosing spondylitis is considered effective - and am seeing different things according to different benchmarks/tests/trials. I  am now seeing 20/40/50% improvement is considered successful at a surface level search.

Many of us experience issues for years, challenges with medical folk, eventually diagnosed and then take meds, and we may experience side effects from these meds. 

As with AS and its forms, people experience things differently. Some people do experience complete relief with biologics/Jak inhibitors, others don’t. Some still have pain and/or restriction after a good period, however lesser than before taking the meds. And many of us will need to change meds along the way. 

Biologics/jaks are meant to slow or stop the progression of AS. There is no cure, and everything I’ve read and been told is about managing it. 

Biologics/Jaks will also not undo mechanical damage caused before diagnosis if it’s delayed. This is not just damage to the SI joints.

I’m really not trying to be a downer, we all have enough to deal with. It’s absolutely worth looking into it further if we’re taking a biologic/jak and still experiencing issues, and doing a med change, incorporating exercise, physio, diet, heat etc, but some issues may remain no matter what we do.

For me, being a grade 2 for the SI joints and mechanical damage to the lower back and neck, and aware that a biologic/Jak would not ‘fix’ it all, I’m really grateful for the relief my Jak has given me. I understand that I’m lucky that my first med worked well and quickly. My ‘management’ is having surgery soon for my worst affected area, getting more nerve ablations in the future, more surgery when needed, and keep using non medical interventions like pillow positioning for sleep, using a tens machine, heat, etc. If the relief from the Jak lessens in the future, I will be looking into trying another Jak or Biologic. I will also be keeping an eye on my scan results for progression, and getting onto medical interventions (ablations/surgery) sooner if needed. 

There are people with AS and its forms who don’t take biologics/jaks with their own legitimate reasoning or medical issues restricting it. This post is not about this.