Ankylosing spondylitis: pain, self medication and biologic medicine

Hello and thank you for agreeing to speak with us. Can you tell us a little about yourself?

Hello, my name is Yvan, I'm 45 and I live in western France. I had a difficult childhood, I was abandoned and taken into care, but I rebuilt my life and went into restaurant and hotel work. Today, I'm in a different field and I created a company to provide digital assistance to people in need. I'm also a "public writer", I write memoirs, among other things, for people who want to leave something behind for their loved ones.

What were your initial symptoms and at what age did you first notice them?

Around the time I turned 24. My first symptoms began to show up at night, mostly lower back pain and pain in my upper thighs. They would initially show up if I had only had 3 or 4 hours of sleep. At first, I chalked it up to fatigue, I was working a lot, and often in a crouched position. So I thought I just needed to change my mattress. It didn't help at all and pain kept getting worse along with stiffness in the morning which made it hard to do my job. I should note that I've suffered from psoriasis from the age of 4 when I was placed into care.

What physician did you go see? Were you incorrectly diagnosed?

I went to see my GP first who prescribed anti-inflammatories and told me I was probably suffering from the beginnings of a pinched nerve. Since nothing was helping, I went back to see him, and after several tests, he told me there was nothing out of normal and maybe I needed to take it easy at work. Finally, he told me that the pain, in his opinion, was all in my head. 

Anyway, after a year of suffering and losing sleep, I changed doctors and the new one referred me directly to a rheumatologist. The first rheumatologist I saw thought the pain was due to bad posture and standing on my feet all day at the restaurant, and he prescribed muscle-relaxers.

Up until my diagnosis my treatments were limited to pain killers, anti-inflammatories and muscle relaxers, all with very little, to no benefit whatsoever.

You resorted to self-medication, can you explain what that meant?

Faced with pain that was getting worse and more frequent and my doctors' inability to treat me, I found comfort in taking codeine. It was the only medication that would let me sleep for an hour or two and that made me feel less stiff in the mornings. I started by taking just one pill, then my body got used to it and I ended up taking an entire tube of it every night, washed down with alcohol to produce a sort of blackout state that allowed me to sleep.

How were you finally diagnosed?

Talking to a friend of mine who recommended his rheumatologist to me. I went to see him, not really expecting much. For the first time, a doctor actually took the time to examine me properly. At the end of the consultation, he sent me to have bloodwork done, without prescribing any new treatments and he told me to get the tests done quickly and come back to see him.

After confirming the presence of HLA B27 in my blood, he diagnosed me with ankylosing spondylitis. He prescribed me mesotherapy sessions that I went to every 15 days, and then every week, but they weren't very effective and the pain was still there.

What was the state of your health when you were diagnosed?

At the time I was diagnosed, I was always tired due to lack of sleep from the pain, with more and more frequent flare-ups that affected my heels, ankles and knees. I had a terrible flare-up over my sternum that landed me in hospital. My psoriasis got much worse too, my legs, elbows, hands and scalp were covered with scales.

Sometimes I hid and cried because the joint pain was so bad and it was keeping me from walking. I had to occasionally go to work on crutches (I lived close to my job).

And as if that wasn't enough, I was suffering from drug-induced hepatitis...

When did you treatments start to take effect? How are you doing today?

When I changed my lifestyle and moved to a new region, I also ended up changing rheumatologists. And the one I found in my new town, after hearing about what I'd been through, immediately recommended that I start on biological therapy.

After tests, he decided to start me on Humira 40mg.

I feel incredibly lucky. In the space of 3 months, my psoriasis completely cleared up and the pain went away. I didn't think it would last and kept telling myself it was only temporary, but today I have to admit that after 6 years on this treatment my health has much improved and I live an almost normal life. The only drawback is having to get an injection every two weeks and pain that comes back every once in a while. I took my life back and got my sleep back. It feels so good to wake up feeling rested.

How is your relationship with the health care professionals you see?

I'm always very suspicious about diagnoses that I get for other minor aches and pains. But, I have a very good relationship with my rheumatologist who got me on biological therapy. He's the only one who understood my pain.

But, when they talk about the long term effects of biological therapy, their answers aren't very clear.

Looking back, how could you have been diagnosed faster?

I think GPs, the first people you turn to, should be more informed about autoimmune diseases and should be more willing to listen to patients instead of automatically assuming they know what's going on. Since I had drug-induced hepatitis, the doctors thought straight away that I must an alcoholic and insisted on believing that, which prevented them from seeing what the real problem was.

What advice would you give to a member who's being tested for AS?

The first thing I would say is "Always get a second opinion". Go see several doctors, and if the solutions they recommend aren't working, don't wait for months before going to see another doctor. Sooner or later you'll find the right one, one who will listen to you and take care of you.

Doing that will keep others from suffering the way I suffered for over 15 years.

Any final advice?

Suffering that lasts for years leaves a mark, not just on our bodies but on our souls, and we often feel completely alone with our struggles. The people close to us can't always understand since the pain is invisible and we end up shutting down.

Myself, I found an outlet in writing a book that tells my story and helps me explain to the people closest to me what my pain was and my rebirth after I got the right treatment. It's very important to unburden yourself.