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Nicky

Age at interview: 57
Age at diagnosis: 48
Brief Outline:

Nicky has Behçet’s disease, a type of systemic vasculitis with symptoms including ulcers, swelling, rashes and fatigue. Nicky is grateful to the dentist who recognised that she needed specialist investigation and treatment.

Background:

After a career in the police and Special Branch, Nicky is self-employed running a transcription company. She is separated. Ethnic background: White British.

More about me...

When Nicky was diagnosed with Behçet’s disease, she says she just about danced out of the hospital. Although she understood it was reasonably serious and couldn’t be cured, she now knew that something could be done about the symptoms she had had for 30 years. She says it was only when the disease was brought under control that she realised quite how ill and miserable she had felt.

The symptoms included “diabolical” mouth ulcers which would go from a normal crop of around 10, to being all down her throat. This made it difficult to speak, eat, brush her teeth and swallow. Similarly, genital ulcers made it painful and uncomfortable to sit. Sores on her fingers meant at times she couldn’t hold a pencil and was embarrassed to shake hands. Alongside this came crippling tiredness and headaches, a particular challenge given the long hours and demands of working in the police and Special Branch.

Nicky is disappointed that a GP suggested mouthwash as a solution but is grateful to her dentist who asked for a specialist opinion. She says everything fell into place when the dental hospital referred her to an immunologist. Investigations included a pathergy test (skin pricks) and a biopsy. The immunologist diagnosed Behçet’s and, supported by a specialist Behçet’s centre, started Nicky on treatment.

Unfortunately, none of the standard immunosuppressants worked and, while steroids (prednisolone) helped, Nicky put on a lot of weight. Moving to infliximab, a biologic drug which suppresses the immune system, “worked a treat.” Two years ago Nicky changed to another biologic drug, adalimumab, which she self-injects once a fortnight. This means that, instead of making the long journey to the immunology department at the hospital every six weeks for the infliximab infusion, her appointments are now every three months.

Nicky is pleased that the adalimumab is keeping her Behçet’s symptoms under control, along with a steroid cream as needed for genital ulcers. However, she knows from experience that stress can lead to a major flare. She feels that running her own business means she cannot afford to take time off work, so does what she can to reduce and manage her commitments.

Nicky can now enjoy again things her mouth ulcers used to make difficult, from eating citrus fruits to playing the oboe. She feels her future is relatively bright and is looking forward to doing more travelling once COVID-19 pandemic restrictions allow. She urges people not to feel they just have to put up with persistent ulcers. She would also like medical professionals to be more aware of what such symptoms might indicate.

 

Before Nicky’s vasculitis was diagnosed, she told her GP she couldn’t live any more with “diabolical” mouth ulcers. She left in tears when the GP prescribed mouthwash.

Before Nicky’s vasculitis was diagnosed, she told her GP she couldn’t live any more with “diabolical” mouth ulcers. She left in tears when the GP prescribed mouthwash.

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Right, well, [sighs] I've only been diagnosed with the Behçet, Behçet’s, I always pronounce it wrong. I think it was about 2011-ish that I finally got a diagnosis. I’d suffered with just diabolical mouth ulcers since probably my early to mid-20s. 365 days a year I would have a minimum of about 10 ulcers in my mouth, the roof of my mouth, my tongue, sometimes down my throat, it was just awful. And I just lived with it.

And then as I got older it got worse. The, I just, it was really, really bad. And I went to my doctor one day and, and I said to her, I said, “Look, I just…” because they were all down my throat, I could barely swallow. I said, “I can’t live with this anymore.” And she was beyond useless. She sat probably as far away as that wall is, shone a torch in my mouth and said, “Ooh yes,” she said, “The best thing for that is Corsodyl mouth wash. So, I’ll give you a prescription.” And I just looked at her and I said, “Corsodyl mouth wash?” and I tore the prescription up and I walked out. And I was in tears.

Anyway, I had an appointment with my dentist, just for a routine check-up and he had often commented on the amount of ulcers that I had. And this was only two or three days after I’d seen the doctor and I, he looked, took one look in my mouth and he said, “My god,” he said, “You've got to see your doctor.” I said, “Well, I just have.” Relayed the story. And he said, “Well, you can’t go on with this,” he said, “I will refer you.” So, to this day, I’m probably the only person on this planet who says that I do love my dentist [laughs]. Because if it hadn’t been for him, I would still be suffering.

 

Once she found a vasculitis treatment that worked, Nicky “felt like a different person.”

Once she found a vasculitis treatment that worked, Nicky “felt like a different person.”

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I mean I used to just think I was just lazy because I was permanently tired. And then it wasn’t until, it took a while to get a treatment that worked, I started off with methotrexate, which did nothing, and then, and I did, I wrote these down because I knew I wouldn’t remember the names, let me just get my bit of paper.

Yes, I started off with methotrexate and then they tried colchicine and then azathioprine, none of which worked, and I was on prednisolone for a while, which worked a treat, but I put on about three million stone, but it, I mean I felt like a different person: I could run up and down the stairs, I was as, you know, I felt 20 years younger, but as fat as a house. And then [laughs] then they started me in infusions of infliximab and suddenly, everything just came together, and the infliximab worked a treat.

So I, I went, I would go to the [tertiary referral centre] every six weeks for this infusion and, and then that changed, the treatment changed, it would've been April 2018, it was after I’d come back, I'd been to New Zealand. And it changed to, I now inject myself with adalimumab once a fortnight. So now, I only have to go to the [tertiary referral centre] once every three months, which is so much better. Because obviously it’s a bit of a hike from here, you know, it’s a good hour each way, it’s not on the doorstep. And the, touch wood, the adalimumab is working well and the symptoms are under control.

I have, I do occasionally get flare ups you know, where the ulcers will come back. I mean I do still get the occasional ulcer, but they're self-inflicted, you know, I’ve, I’ve bitten the inside of my mouth or something. But every now and then I have had a, a proper flare up where it’s come back with a vengeance and I've had several, and they used to give me a prescription of prednisolone which I would take but I’d rather, I now know that the flare up will dissipate, and particularly now I’m doing the injections every two weeks, by the time my second, next injection is due, that will take care of the flare up. So, I’ve knocked the prednisolone on the head – as effective as they are, I don’t like taking them anymore because I know I’ll just, I mean I’m fat enough as it is [laughs].

So, at the moment things are well controlled, and I said to one of the doctors, one of the consultants there, once the infliximab and the adalimumab started working, that I couldn’t believe how ill I had felt and how rotten I had felt for so many years, until all the symptoms had gone away. It was just amazing, and I just felt like a different person, you know, it’s, you don’t realise how debilitated you are until that debilitation is taken away.

 

Until her vasculitis was treated, Nicky at times “physically couldn’t blow” her oboe.

Until her vasculitis was treated, Nicky at times “physically couldn’t blow” her oboe.

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Yes, yes, I play the oboe. And that was certainly something that was very badly affected because with the oboe, it’s a double reed instrument so you have a, a small reed and you have to sort of put your lips over your teeth to play it. Now, if you’ve got ulcers on the inside of your lips, as I often did, couldn’t do it. Or on the end of your tongue because you know, sometimes you’d have to – if you had to tongue a note, you had to sort of put your tongue right on the, and there were, I couldn’t, I physically couldn’t do it because it was too painful.

So yes, that was, that was very badly affected. Although I have to say, really between, I didn’t really – when I was working in the police, I didn’t play a lot anyway, but then when we came up here, which was in 1998, after George died, our son, my husband ran off and bought me an oboe because he thought it would be good for me to learn again, which was fantastic. And it was just what I needed. But and that was in 1999, so it was another 10, 12 years before I got the diagnosis – is that right? Yes. I’m very bad at maths, 1999 – 2012, anyway, a lot of years. And I did really struggle, you know, I was having lessons because I’d forgotten most of how to play, [laughs] and I, quite often I had to cancel my lessons because I physically couldn’t blow the instrument, so yes, it did affect that quite badly. Fortunately, touch wood, it’s, it’s again, it’s not an issue now and I can pick it up and play it any day of the week, which is wonderful. Because I really do enjoy it.

 

Nicky runs her own business. Her vasculitis will flare if she lets things get on top of her.

Nicky runs her own business. Her vasculitis will flare if she lets things get on top of her.

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Yeah, in a way. I mean I think particularly with running a business, you know, I can’t go, I can’t have a day off sick, because the work won’t get done. So, I just sort of say to myself, well, you know, you've got to keep it under control, the Behçet’s under control, you've got to stay on top of it, because you can’t afford to let it interfere with work. And I've always had a, a fairly pragmatic approach to things, you know, when I was in the police as well, I was always fairly down to earth.

And I try not to let things get on top of me and, and bother me too much, but sometimes they do. It’s difficult, it is difficult to really sort of separate the two at times, but no, I do know if I let everything get on top of me too much, I will have a flare up and the flare ups are really unpleasant, and I don’t want that. So, it’s always at the back of my mind to just sort of stay a bit more grounded and not let that happen. And it generally, I can keep on top of it normally and sort of keep things in context.

 

Nicky’s vasculitis flared badly during a series of stressful life events.

Nicky’s vasculitis flared badly during a series of stressful life events.

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And so now, I try my very best to not worry too much, to try and sort of just keep things on a level keel because it does definitely – for me anyway – too much stress and worry. I mean when, when I moved here, I sold the house and because I don’t have children I thought bugger it, I'm going to sell the house, bank the money, rent somewhere because I've got nobody to leave anything to, and have lovely holidays and enjoy the money, and be selfish.

But when I was selling the house, my dad was very, very ill, he had dementia and cancer and everything else and my brother and I were sort of looking after him, so I had the whole house, the sale to do myself, I had to pack the whole house up and move. And I had to move into a temporary house whilst this was being renovated and the stress was enormous and worrying about dad. And then dad died two days after I moved house, so I hadn’t even been able to see him for a couple of weeks. And that caused a massive flare up, because, you know, I had a whole load of work that was piling up whilst I was doing the move, the move itself, worrying about dad then dad dying and me knowing I hadn’t been able to see him. And I had a huge flare up then and, and it was just caused by just all the stress of it all. So, I try very hard not to get stressed, [laughs] which is easier said than done. But, but yeah, it does cause problems.

 

After being “round the houses,” Nicky’s vasculitis is dealt with “in one place with people who understand everything that’s going on with it.”

After being “round the houses,” Nicky’s vasculitis is dealt with “in one place with people who understand everything that’s going on with it.”

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As I said, I did go round the houses, starting with dentistry and then dermatology and eventually to immunology. And it was, now that I’m under immunology, it’s all fallen completely into place, I don’t have to go anywhere else for anything else. Everything is dealt with, within immunology: the skin side of it, the ulcers, the rheumatism, or the arthritis rather, that is what it is, I've had that for a good many years. I don’t think my joint problems are caused by the Behçet’s, that’s just the rheumatoid arthritis. But everything else is dealt with very neatly within immunology. But yes, I did have to go round the houses before I got there but now I'm there, it’s all sorted out. So, I mean I don’t know, I don’t know much about other forms of vasculitis, because there are an awful lot, but for me, certainly, immunology is the go-to place and I would fly my flag up their pole any day of the week [smiles].

And it’s so much better that way, because you’re not sort of trailing around a hospital with an appointment in the dentistry clinic then an appointment in the dermatology clinic, it’s so much better to be treated in one place with people who understand everything that’s going on with it. So, they understand the ulcers and the skin problems and everything else, it’s so much better, and they’re very knowledgeable, you know, they do know their onions in there. I mean obviously the, with the ulcers, the dentist, the people in the dentist hospital were, knew a lot about ulcers, but couldn’t get to the root cause of it. Until I, it was, it wasn’t until I sat down with Dr [surname] in immunology and he put all the pieces of the jigsaw together and he did this pathergy test and he said, “Right, there’s your diagnosis,” and off we went towards treatment.

So, it needs somebody like him or the other consultants in the immunology clinics to be able to put all those pieces together, and that’s the difficult bit, because other specialties didn’t seem to be able to, I suppose because you can’t expect doctors to know everything about everything, obviously it’s absolutely impossible, but they just didn’t seem to have any idea of how to put the pieces together. And the immunology people just immediately [snaps fingers] bing, bing, bing and it all fitted, fitted fine.

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