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Ankylosing Spondylitis: A long wait for treatments that barely work

Carole suffers from Ankylosing Spondylitis. For years, her complaints of chronic pain were not taken seriously and were blamed on her weight. She recounts her battle for an accurate diagnosis and how she has been since diagnosis, as she continues to wait for her treatment to take effect.

Mysterious Pains and Misdiagnosis

I’ve suffered from multiple sprains since I was 8 years old, and then, around the age of 17, I underwent an operation on two subclavian arteries.

Fifteen years ago, I started having back pains, but only in the morning when I got up. My doctor told me, after having an MRI and X-rays, to change my mattress, exercise and try to lose some weight. But despite changing my mattress and losing weight, I didn’t get better, my back was still killing me in the morning… So I decided, “Oh well, I’m going to put myself out a bit” and every day I got up at 7 AM just to avoid the back pain.

>> Do you live with Ankylosing Spondylitis? How has it affected your life? Share your experiences here

 “One thing was certain: I was a fat hypochondriac”

I moved due to job change, so I had to change my GP as well. Unfortunately, the first one thought I was a nutcase and that my pain was all due to my weight; the second one sent me to an endocrinologist after conducting a loads of tests on me. The endocrinologist told me, without even examining me, that if I lost some weight, I’d feel better. So, one thing was certain: I was a fat hypochondriac. That was the only explanation they had for my chronic pain.

>> Learn more about Ankylosing Spondylitis symptoms

I moved again for my work and got a sprain that took three months to heal. By then, the back pain was waking me up in the middle of the night and keeping me from falling back to sleep. So, I made a list of all the problems and pains I was having and gave them to my new GP. He took a look at my list and told me: “You have a few symptoms that do not match with my initial prognosis, so let's keep searching.”

A Series of Test to Diagnose Ankylosing Spondylitis

So we got to testing: blood sample to check the rheumatoid factor: extremely high CRP and VS levels and sleep apnea test. The doctor said there were only two possibilities left: Ankylosing spondylitis or arthritis and since I was “too young” to have arthritis, it could only be AS. To get final confirmation, I had to get an MRI of my sacroiliac joints and make an appointment with a specialist. In the meantime, my doctor gave me anti-inflammatories to reduce the pain.

I waited for months to get an appointment with the specialist. I gave him a letter from my GP and showed him the results of all the tests that I had taken since I was a child. I told him about the multiple sprains, I showed him the MRI of the sacroiliac joint and the blood tests. Even though he insisted on telling me that the CRP And VS levels could have been due to my weight, he confirmed the AS diagnosis. He told me “If you hadn’t done the MRI, I wouldn’t have seen it, but it’s there. There’s no doubt about that. You have AS.” I left his office with a diagnosis that took me years to get…I could finally put a name on it. I still had to undergo a test for the BLA B27 gene, which I was positive for.

AS Treatment

NSAIDs

The intern talked to me about treatment options and I decided to try three NSAIDs (Nonsteroidal anti-inflammatory drugs), and I was put on 3 months sick leave for yet another strain. A few months later, I came down with acute shoulder tendinitis (which meant carrying my arm around in a sling). At my 3rd appointment, the intern told me that the condition had progressed and that I should switch to a biopharmaceutical treatment. I did the necessary tests, took a vaccine I needed, and in July 2019, I started on Simponi.

Biopharmaceuticals

I’m on my second injection. The first one allowed me to get a full night’s rest…my lower back doesn’t give me any more trouble. However, after the second one, my pain is back and my hips and knees are swollen despite taking NSAIDs twice a day. A radiography showed pinching in both my knees and the left hip.  

>> Talk with other members about Ankylosing Spondylitis treatments on the forum

I’m now on my third sick leave and I can’t walk around without a cane. My GP told me to be patient and wait until my third injection. But it’s a long time to wait.

The Psychological Effects of a Chronic Illness

As far as my family goes, I’d say my daughters are supportive, my partner tries to help me however he can, but my own family has had a rough time with it. It’s an unseen illness, so one of my sisters is convinced I’m just a hypochondriac and my mother thinks I’m just making it up. Even when I showed her the official diagnosis, she still didn’t believe me…I just let it go, I don’t even try to explain it anymore. I go to see them when my health permits, but we don’t talk about it.

As for my morale, it’s really hard to feel like you can’t do much. Even though I see a chiropractor, I am not seeing any improvement in my condition and this really gets me down. Especially when you need to move about, but you’re too tired to do so and your legs just won't respond. So, I joined a few internet support groups. It helps to get the suffering out in writing even if I still get down about not being able to run, hike, bike… Sometimes, I have hope, sometimes I’m completely demoralized, but I’m happy that those web sites exist.

My advice for patients suffering with AS

Be strong and don’t let go. And especially, if your doctor doesn’t believe you, get a new doctor. He probably just doesn’t know enough about this condition.

>> Meet other patients and talk about living with Ankylosing Spondylitis on the forum

Thank you, Carole for sharing your experience. What about you? How were you diagnosed with AS? What treatments have worked for you?

avatar Louise-B

Author: Louise-B, Content & Community Manager

Community Manager of Carenity in France, Louise is also editor-in-chief of the Health Magazine to provide articles, videos and testimonials that focus on patients' experiences and making their voices heard. With a multidisciplinary background in journalism, she coordinates the writing of content for the Carenity platforms and facilitates the members' interaction on the site.

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