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Living with Behçet's disease

Published on 30/07/18 at 11:22am

Suzanne Morris speaks to Pharmafocus to discuss her life with Behçet's disease, a rare condition characterised by the inflammation of the body’s blood vessels and a host of other seemingly unrelated symptoms.

Could you explain when you first developed symptoms of the condition?

Every Behçet's patient’s story is different but, with me, I started getting symptoms as a teenager. The doctors presume it was due to the hormone surge that comes with puberty which actually kicked things off. It wasn’t until I was pregnant that I got my diagnosis. Similar to vasculitis and lupus, the symptoms can almost be logically explained away. When I was going through school, I was told, ‘Oh, it’s just growing pains!’ When I had mouth ulcers, which appear through my mouth and down the back of my throat, during exams at school or university, it got explained as being a result of stress.

There must have been a huge amount of frustration about not getting a diagnosis?

Calling it frustration would be a massive understatement! Anybody who, effectively, lived under the same roof as me – family or university housemates – could see something was going on: I couldn’t eat, I couldn’t sleep, I couldn’t talk due to the mouth ulcers. Anyone could see that this was not a normal stress response; I used to get mouth ulcers the size of my fingernails, they weren’t your standard issue mouth ulcers. It was obvious that something wasn’t right.

How did your eventual diagnosis come about?

When I became pregnant, I started having more symptoms. At the time, I changed my GP and I took my additional symptoms to him. When he saw my medical history, he just said, ‘What on earth is going on here? ’ I promptly burst into tears because, other than my dentist who had seen my mouth ulcers, no one had taken me seriously. It was a massive relief to finally find a GP that wanted to know what was going on. He admitted there and then that he had no idea but said that he would send me to every department possible to find an answer. There’s 8,000 rare diseases, you can’t expect them to know each one but what really helps is a GP that believes you and can see the patient’s point of view – not to be seen as being a hypochondriac, or making it up, or being a drama queen, but the acknowledgement that something is actually going on was really important.

From there, I was sent to the hospital and, again, it was luck of the draw; finally, I met with a consultant who asked me whether I wanted to hear the good news or the bad news – I knew I needed to hear both so I asked him to tell me. He said that they knew what it was: it was Behçet's disease but, because I was pregnant, I couldn’t receive treatments that are able to ease the pain and symptoms; the treatments are all immune suppressants or steroids, so I had to go through the rest of my pregnancy just taking paracetamol.

It really shows how much of a difference can be made by GPs.

Absolutely, I’ve created a patient journey poster for the Cambridge Rare Diseases Network, on behalf of Vasculitis UK, and that’s a theme I hear time and time again – how vital a supportive GP is.

How important is a good support network?

I can’t fault my medical team, both my GP and the Addenbrooke's Hospital team. I’ve even been up to the Behçet's centre of excellence in Liverpool, to pick the brains of the team up there. They’ve all been fantastic, even though my case has been particularly challenging as mine is now regarded as refractory Behçet's. I always feel that they’ve listened to me as a patient and taken my concerns, worries and needs as a human being into accounts. I’ve been on four drug trials with their support.

What are the main symptoms of the condition?

Joint pain – I feel like most of my major joints need oiling, they’re very stiff and very painful. I get a tiredness that is similar to chronic fatigue; a tiredness that doesn’t go away no matter how much you rest or sleep. Off the back of that, you get quite a lot of brain fog. For me, this comes with issues with language; I struggle to process language and getting words out can sometimes be a challenge. I can also get sensory overload where I get to a point where my brain can’t take anymore. Supermarkets, for example, can be way too much because of the lights, the number of people, the smells and trying to negotiate what I want to buy. That’s a very practical example of where the fatigue is biting and it can make life very difficult. I can get mouth ulcers, all over my mouth: on my tongue, roof of the mouth and down the throat. Grim details, but it’s part of the disease: I can get genital ulcers – if you think mouth ulcers hurt, that’s nothing.

What treatments have you received since your diagnosis?

It’s tricky because it’s a relapsing/remitting condition. My blood results also never show what is happening whereas some patients you can read their blood results and see that their symptoms will be flaring. I’ve been on most of the standard pathway drugs for Behçet's. I’ve been on the anti-TNF, with varying degrees of success. I reacted well to infliximab [Remicade, Inflectra or Remsima], where I had IV infusion every three or four weeks. I could always feel that I was ready for my next dose because my joints would get creaky three to four days before. For the year I was on the treatment – and the year after having had it, as I was taken off due to my body reacting to it – I was sent into remission. After this, I was put onto alemtuzumab [Lemtrada] because I’d tried everything else. Some patients have had miraculous results with it; for me, I had seven months remission with it and I felt like Wonder Woman. But, I could tell when round two was needed, when my symptoms came back. This time round though, I could tell it wasn’t as effective so by three months I started showing symptoms again. I had round three as a subcutaneous injection and was one of the first to receive the drug in this type of delivery, with the hope that it would be slower release than IV. For me, my body was producing strong antibodies against it, so my bonkers immune system was just spitting the drug out.

The all-round opinion is that the disease is in remission and I just have to do the best I can with the fatigue and joint pain when it’s hitting me. At the moment, the indication is that there is some separation of symptoms within the disease – I’m still tired and I’m still suffering from joint pain but there are no other signs of Behçet's.

Do you have any advice for anyone newly diagnosed with the condition?

Get as clued up as you can on your drugs and your condition. Get as involved as you can in the support community around your illness because then you will feel a lot less isolated, which is worth its weight in gold.

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