Newly diagnosed Ankylosing Spondylitis

Hi all 👋

I hope you're all doing well. I wanted to seek some advice on my recent AS diagnosis. I dont know anyone with the condition so Im hopeful someone can offer advice please 😊

Five years ago, I had a fall which led to occasional bouts of sciatica. These episodes were occurring on average twice per year. They did bring about severe pain and disrupted my daily activities.

Initially, I sought medical help and requested an MRI to better understand the root cause of my pain. Unfortunately, I was refused an MRI and given physiotherapy but discharged from physiotherapy as they considered me fully mobile. I was fine at physio as the pain was only occasional. The pain kept reoccurring, even though not often I was still concerned, but I carried on as normal.

Last year, in addition to the on and off sciatica pain, I started experiencing nighttime back pain that would wake me up. At first, I suspected it was kidney-related, (I've also got Ulcerative Colitis, been in remission for a year but have also had bilateral hydronophrosis in the past so suspected kidney) but after further investigation, I was advised my kidneys were fine and I was finally getting my MRI for my back.

The MRI results revealed a herniated disc, which explained some of my symptoms. However, it also indicated severe chronic sacroiliitis. Then leading to my diagnosis of AS.

At this point the pain at nighttime had reduced massively and still has touch wood. It no longer wakes me up at night, but I cannot lie comfortably on my right side so I just don't. Otherwise than that I'm fortunate that I'm fully mobile at the moment and have no pain in the day, aside from if I have what I would call the sciatica flare up which makes me unable to get around and is extremely painful. However, like I said this doesn't happen often - luckily twice per year at most.

I've recently had my appointment with rheumatology who have told me my inflammation is so severe that if I do not respond to treatment well or take treatment soon I'll end up in a wheelchair.

They also informed me I need to be aware of my risks taking humira due to the lymphoma risks as I have family members that have passed from this, however they've said there are no other treatment options for me. I believe this is due to my Ulcerative Colitis I'm still restricted on treatment options.

I know everyone will direct me to a medical professional, which makes sense and I am awaiting a private consultation but I just wanted experience related advice.

I was really surprised to here how severe this is when my pain I feel is improving alongside my mobility. Is this normal?

I'm also struggling with them on the one hand saying people with AS have a normal lifespan but then saying we have more of a risk of inflammation of the heart breathing issues etc so not sure how that lines up?

I just feel a bit lost and unsure where to turn. Before undergoing treatment I just feel I need more information. I am sure I'll get from a private consultant but I was really hoping to hear stories from others, any advice or if anyone had a similar experience.

Thanks everyone for your time reading this if you have!