Brenda

Brenda has a type of systemic vasculitis called polyarteritis nodosa (PAN), which is under control on medication. She would like to be sure that, if she has a relapse, it will be treated quickly and appropriately.

The first sign of vasculitis that Brenda remembers was while Christmas shopping in 2010. She felt unable to walk and had a rash over her legs and feet. She was told to rest and was fine within a few days but, in October 2013, the same thing happened again. By March 2014, things had taken a turn for the worse. However, Brenda says her GPs continued to treat her as if she had a virus, and she had to insist on going to hospital.

In hospital, doctors told Brenda that her inflammatory markers and blood pressure were extremely high. She was treated with many antibiotics and had numerous investigations, including different types of scans, a temporal artery biopsy, and an echocardiogram. After six weeks Brenda was discharged, with doctors still unable to identify what was wrong.

Back home, Brenda lost weight and struggled to walk. Over the next few weeks, she lost power and developed numbness in her legs and hands. A neurologist referred her to a rheumatologist who suggested Brenda may have a type of vasculitis called polyarteritis nodosa (PAN). While on high dose steroids and awaiting a nerve test, Brenda was re-admitted to hospital where a specialist said she had severe nerve damage due to the vasculitis.

In addition to the steroids, Brenda was given mycophenolate to suppress her immune system, and persisted in spite of unpleasant side effects. She used a walking frame for four months, and a stick for a year while some nerve recovery took place and the vasculitis came under control. At first, she struggled even to lift things out of the oven and was unable to drive for two years. She says that over this period the pain from the nerve damage was unbelievabl and the only relief was from 12-hour medication patches.

In 2017, when Brenda was tapering her steroids, she experienced a spiking temperature and night sweats and was generally unwell. Although she was certain this was a relapse, she is disappointed that her GP treated it with paracetamol and an antibiotic. This meant it was a month before she saw a rheumatologist and had an immediate improvement with high dose steroids. In future, Brenda would find it reassuring to have direct access to rheumatology when she has early signs of a flare.

Brenda’s vasculitis has been under control on medication for three years and she has learned to manage the nerve damage and tiredness. Brenda has found that vasculitis is a lonely disease and the internet is doom and gloom She says that at first you want to curl up in a ball, but things can get better. When she was first diagnosed, one-to-one conversations with people further down the line helped her to see a future. Brenda now tries to give this kind of hope to others.

Brenda hadn’t known that her neurologist was in touch with a specialist for advice about her vasculitis.

Age at interview 75

Gender Female

Age at diagnosis 69

And see your team – so your rheumatologist, your neurologist, your GP – do you know that they talk to each other?

No, they don’t. The neurologist and the rheumatologist would have a good relationship and they would be in constant contact, not necessarily about me, but about, you know, the disease. Now, I know the neurologist, when I went to him first, I think [the support group funder] went to [place in England] to try and get hers identified because she couldn’t get any satisfaction here initially. And I spoke to my neurologist, and I said, you know, when he was struggling with my disease, I said, “Look, could I go and get a second opinion in [place in England]?” and he said, “But I’ve been in touch with [place in England].” He said, “I talk to [place in England] a lot, I’ve brought your case to [place in England].” And he said, “They agree with me, what they think is wrong with you.” So, there is that connection. The, he had this connection with, obviously, somewhere in [place in England] that, you know, that deals with this. So, he had gone for advice too.

But isn’t that interesting that he hadn’t told you?

No. And then but my GPs don’t. It’s almost like as if the GPs are in awe of the specialists and wouldn’t dream of contacting them. My specialist said, “It’s very important that you have the one GP who knows your case.” Because we have a practice of about six GPs. So, I said, “Okay,” I asked in the practice, and I said, “Can I have one GP who would know my case?” and they said, “Okay.” And I’ve only seen that GP once in six years. Because when you ring to speak to them, they’re either off, away, not working today, you know? So that didn’t work.

Okay.

And even at that GP, when I did see her, you know, she was young and she wasn’t, she wasn’t really tuned into my problem really. They’re also afraid to make any decision without the consultant, you know, so they wouldn’t, they wouldn’t change your medication or give you any advice or, you know, do anything. They’d just say, you know, “Wait until you see your consultant again.”

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Meeting people who were doing well with vasculitis gave Brenda “hope” – but she doesn’t want to listen to them talking about their illness at support groups.

Age at interview 75

Gender Female

Age at diagnosis 69

I did, think, go on to the internet and get in touch with her, and then she got in touch with a lady who lives in my local area who came to see me. And it was fantastic because she, she had lived in Italy and she said to me, “I’m going to Italy next week,” and I thought, “How could you go to Italy? I can’t get out of the chair.” You know, “How can you be as bad as I was and get better?” And she was the first one made me think, you know, “Maybe I can get better.” Maybe, you know – she was the first one ever said to me, gave me any hope.

And then I got in touch with someone else – I play bridge – and I got in touch with somebody else who said, “I think I know somebody that’s got something like you.” And I phoned them, and he said, “I’m back running again.” He said, “That’s five years ago, but I’m back running again.” And I thought, “Yes, I can do this now.” You know, if I just really, really am determined. Really determined. You know and I used to walk with a walking frame until I was exhausted, and just, I, people say to me, “You were so determined,” but I had no choice. You know, if I wanted to get better, I had to really, really push it. But you have to push yourself. Really, really. All you want to do is curl up in a ball and just do nothing.

I went to one [support group] but I was sitting – and then we had a meal afterwards – and we were sitting at two large tables. And every bit of the conversation was about their illness. And I thought, “I don’t want to be in this company.” I know, I know it was very useful at the beginning, talking to someone, but when I started to feel better, I just thought, “I don’t need to be in this sort of company,” you know? And a two-day conference of people telling me, you know, about pain and about – because at that stage I felt I had managed the pain, I’d managed how to cope with the tiredness, I’d managed how to do this. And I thought, “No, I don’t want to sit for two days listening to this, really.”

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Brenda couldn’t drive until the nerve damage from her vasculitis improved. She now uses an automatic car.

Age at interview 75

Gender Female

Age at diagnosis 69

Well, I couldn’t drive for two years because my feet couldn’t feel the pedals. I had no sensation in my feet so I couldn’t drive, that was another ‘trapped’ [laughs], I couldn’t get out. And then when I started to feel a bit better, I have some more feeling in my feet now even though they’re numb – it’s hard to describe – I have feeling in them. So, then I started to go out for little drives to see how I would manage, and I’m fine now driving, absolutely fine. So, I’ve no – no, I don’t need any adjustment, but I did buy, because of my hands go numb and sometimes go into a bit of a spasm, I did buy an automatic a couple of months ago. So, I thought, you know, long-term and also because my left foot is my worst foot. My left foot and my left hand are the two, you know, worst parts, so it means I don’t need my left hand for the gearstick, and I don’t need my left foot. So that’s why I decided to buy an automatic, so, you know, it makes life a lot easier.

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Brenda feels that, unless people have vasculitis or a long-term illness like it, their sympathy only lasts “for a little while” then they “don’t want to know any more.”

Age at interview 75

Gender Female

Age at diagnosis 69

Well, I’ll tell you what doesn’t help: people telling you it’s all in your head. And I have had family members saying to me, “This is all in your head.” Okay? And also, people are sympathetic – for a little while. You know? Even your own family are sympathetic – for a little while. My own husband – for a little while. But then they get sick of it, you know, and you, nobody asks you anymore how you’re feeling or, you know, when it goes on so long, you know, if you’ve an illness that gets better, people are very interested, know you’re getting better, they love to tell you you’re getting better, and you know, “Oh, look at, you’re great now,” but they really don’t want to know about long-term illness. You know. And everyone, you know, the friend that I have here locally who’s had it too, says exactly the same. People don’t ask anymore. They don’t want to know anymore.

And I think that’s… so I think the only people that you can talk to are people who have had it themselves too, or had an illness like that, you know, that’s lifelong illness. That, you know, because you won’t get sympathy, or you won’t get help. And if I’m not feeling well and go to bed, my husband will just shout up, “Are you coming down for dinner?” and when I come down there’s no dinner made, I just have to make the dinner, you know? So, it’s just, that’s just life, you know, just because if you’re fit to be up and about, you’re fit to do everything. That’s what I find, you know, so. That’s why I think you’ve got, I’ve got to be self-sufficient because I just feel there really isn’t anybody out there, you know, will keep me going except myself. So that’s what I feel about it all.

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Brenda’s doctor reduced her mycophenolate dose as side effects were “very, very tough.” She also reacted badly to painkillers.

Age at interview 75

Gender Female

Age at diagnosis 69

It’s mycophenolate really, that was the one that I was given. They were very tough at the beginning, you know? They were, really, really made me feel, you know, palpitations. You know, I’d stand up and I would faint and I would just, you know, just very, very tough. And when she increased them three years ago, I cried really, because I thought, you know, “I can’t take any more of this drug,” you know, “please don’t give me,” and she said, “Look, we’ve got to.” She said, “Because you’re going to keep having these relapses and we’ve got to stop them.” So, she didn’t give me the full dose, she said, “Look, I’ll give you another half dose of…” you know, the next bit would be the full dose but I’m not on the completely full dose because she said, “I know you can’t take any more,” and my body just couldn’t take any more.

But I’ve also got to say, the pain, the pain of the nerve damage, nobody could describe it. It’s unbelievable. And again, I tried all the different nerve painkillers, and I had a reaction to every single one of them. I ended up in hospital, one of the painkillers, I don’t even remember leaving the house, I was taken in an ambulance. The other painkiller, I was covered in a rash from my head to my toe. Another one, palpitations were so bad I had to come off them, so I ended up with no painkillers for the nerve damage. But then one doctor gave me patches, which he said were very expensive, and they were the first thing, but I used – you only put them on 12 hours on and 12 hours off – and I used to sit and just wait for the 12 hours so I could get them on again. But eventually all that sort of calmed down and just, so this is where I am.

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In spite of numerous investigations, doctors still didn’t know that Brenda had polyarteritis nodosa (PAN), a type of vasculitis.

Age at interview 75

Gender Female

Age at diagnosis 69

So, I went to A&E and I was admitted immediately. And they said my inflammation markers were so high, they’d never seen anybody coming in with inflammation markers so high. I was then transferred to one of the bigger hospitals and they couldn’t find anything wrong with me. So, I stayed at that bigger hospital but because the beds were in such demand – I mean, they couldn’t see anything wrong with me, so they transferred me back to the local hospital.

In the local hospital I was given, I’m sure, ten different antibiotics, one after another. Nothing worked. I was sent for PET scans, ultrasounds, MRIs. Now, we live in Northern Ireland, I was sent to Dublin, to a big specialist hospital in Dublin for special scans. I was, had a heart echo, I had every sort of – I mean, the National Health Service, it must have cost them a fortune. I had every sort of scan or anything. I had a biopsy on my artery here [points to head] which was really very scary, and during all this time my blood pressure was really dangerously high, and they couldn’t get it down.

So, I was in hospital for six weeks and I was dismissed, and no diagnosis. So, they said the inflammation markers had come down quite a bit, so they were happy to let me go, but they didn’t know what was wrong with me.

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Brenda “knew immediately” that her vasculitis was relapsing, as the symptoms were the same as before.

Age at interview 75

Gender Female

Age at diagnosis 69

And I was absolutely fine then, I was still on the steroids, still on the immunosuppressant drugs, and they decided to reduce the steroids and take me off them.

And they took me off them after three years and I had a relapse. But once I had the relapse, I knew what was wrong. Because how I know now is, my temperature spikes – I forgot to say in the hospital, every day my temperature went up at lunchtime. Went high at lunchtime. It wasn’t there in the morning, went up at lunchtime very high, and I would night sweats. I would have gone through four or five nighties a night, just absolutely saturated. And that had been going on from the April. So, I’d had six months of that, every night, and this spiking temperature.

And when the spike in temperature spiked, I was really, really unwell, but when I’d get up in the morning, because the temperature had gone down, I was feeling all right. So, when I had the relapse, I knew immediately what was wrong because it started with the spiking temperature, it started with the night sweats, feeling absolutely really unwell, couldn’t get up the stairs. And I went to the doctor, and he told me to go home and take a paracetamol and stay in bed.

So, I then did that for about a week and then a doctor gave me an antibiotic for another week, he said, “Try this to see if this works.” I knew it wasn’t going to work and took the antibiotic for a week and I was really, really ill. And I phoned the hospital to see if I could get in touch with the consultant, but I couldn’t, so eventually this one doctor said, he said, “Look,” he said, “I think we’re just going to have to hit you with a high dose of steroids to see if this is going to…” I had reduced my steroids down to about five, and he said, “Look, we’ll hit you with a high dose and see if this works.”

And it did. The next morning, I could get up and go for a walk. It was so sudden. The high dose of steroids just completely made me well and I was able to go for a walk the next morning. So afterwards he said, he said, “We just got this in time.” But that was after a month of being told it was a virus, just go to bed with paracetamol, take this antibiotic. And I knew from the beginning what it was.

So, thank goodness, from that date, I went back then to the rheumatologist, and she increased my immunosuppressant drugs. And she said I will be on those for life, and I will be on the steroids for life. I am not to come off them.

So, I’m on low dose of steroids and quite a high dose of immunosuppressant, and I’m on blood pressure tablets which, thankfully, now have, you know, calmed my blood pressure. So, you know, that’s three years ago and I really am feeling well.

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Brenda feels that, unless people have vasculitis or a long-term illness like it, their sympathy only lasts for a little while then they don’t want to know any more.

Age at interview 75

Gender Female

Age at diagnosis 69

Well, I’ll tell you what doesn’t help: people telling you it’s all in your head. And I have had family members saying to me, This is all in your head Okay? And also, people are sympathetic – for a little while. You know? Even your own family are sympathetic – for a little while. My own husband – for a little while. But then they get sick of it, you know, and you, nobody asks you anymore how you’re feeling or, you know, when it goes on so long, you know, if you’ve an illness that gets better, people are very interested, know you’re getting better, they love to tell you you’re getting better, and you know, Oh, look at, you’re great now but they really don’t want to know about long-term illness. You know. And everyone, you know, the friend that I have here locally who’s had it too, says exactly the same. People don’t ask anymore. They don’t want to know anymore.

And I think that’sso I think the only people that you can talk to are people who have had it themselves too, or had an illness like that, you know, that’s lifelong illness. That, you know, because you won’t get sympathy, or you won’t get help. And if I’m not feeling well and go to bed, my husband will just shout up, Are you coming down for dinner and when I come down there’s no dinner made, I just have to make the dinner, you know? So, it’s just, that’s just life, you know, just because if you’re fit to be up and about, you’re fit to do everything. That’s what I find, you know, so. That’s why I think you’ve got, I’ve got to be self-sufficient because I just feel there really isn’t anybody out there, you know, will keep me going except myself. So that’s what I feel about it all.

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Meeting people who were doing well with vasculitis gave Brenda hope – but she doesn’t want to listen to them talking about their illness at support groups.

Age at interview 75

Gender Female

Age at diagnosis 69

I did, think, go on to the internet and get in touch with her, and then she got in touch with a lady who lives in my local area who came to see me. And it was fantastic because she, she had lived in Italy and she said to me, I’m going to Italy next week and I thought, How could you go to Italy? I can’t get out of the chair You know, How can you be as bad as I was and get better And she was the first one made me think, you know, Maybe I can get better Maybe, you know – she was the first one ever said to me, gave me any hope.

And then I got in touch with someone else – I play bridge – and I got in touch with somebody else who said, I think I know somebody that’s got something like you And I phoned them, and he said, I’m back running again He said, That’s five years ago, but I’m back running again And I thought, Yes, I can do this now You know, if I just really, really am determined. Really determined. You know and I used to walk with a walking frame until I was exhausted, and just, I, people say to me, You were so determined but I had no choice. You know, if I wanted to get better, I had to really, really push it. But you have to push yourself. Really, really. All you want to do is curl up in a ball and just do nothing.

I went to one but I was sitting – and then we had a meal afterwards – and we were sitting at two large tables. And every bit of the conversation was about their illness. And I thought, I don’t want to be in this company I know, I know it was very useful at the beginning, talking to someone, but when I started to feel better, I just thought, I don’t need to be in this sort of company you know? And a two-day conference of people telling me, you know, about pain and about – because at that stage I felt I had managed the pain, I’d managed how to cope with the tiredness, I’d managed how to do this. And I thought, No, I don’t want to sit for two days listening to this, really

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Brenda hadn’t known that her neurologist was in touch with a specialist for advice about her vasculitis.

Age at interview 75

Gender Female

Age at diagnosis 69

And see your team – so your rheumatologist, your neurologist, your GP – do you know that they talk to each other?

No, they don’t. The neurologist and the rheumatologist would have a good relationship and they would be in constant contact, not necessarily about me, but about, you know, the disease. Now, I know the neurologist, when I went to him first, I think [the support group funder] went to [place in England] to try and get hers identified because she couldn’t get any satisfaction here initially. And I spoke to my neurologist, and I said, you know, when he was struggling with my disease, I said, Look, could I go and get a second opinion in [place in England] and he said, But I’ve been in touch with [place in England] He said, I talk to [place in England] a lot, I’ve brought your case to [place in England] And he said, They agree with me, what they think is wrong with you So, there is that connection. The, he had this connection with, obviously, somewhere in [place in England] that, you know, that deals with this. So, he had gone for advice too.

But isn’t that interesting that he hadn’t told you?

No. And then but my GPs don’t. it’s almost like as if the GPs are in awe of the specialists and wouldn’t dream of contacting them. My specialist said, it’s very important that you have the one GP who knows your case Because we have a practice of about six GPs. So, I said, Okay I asked in the practice, and I said, Can I have one GP who would know my case and they said, Okay And I’ve only seen that GP once in six years. Because when you ring to speak to them, they’re either off, away, not working today, you know? So that didn’t work.

Okay.

And even at that GP, when I did see her, you know, she was young and she wasn’t, she wasn’t really tuned into my problem really. they’re also afraid to make any decision without the consultant, you know, so they wouldn’t, they wouldn’t change your medication or give you any advice or, you know, do anything. They’d just say, you know, Wait until you see your consultant again

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Brenda’s doctor reduced her mycophenolate dose as side effects were very, very tough. She also reacted badly to painkillers.

Age at interview 75

Gender Female

Age at diagnosis 69

You mean what’s the name of them? Mycophenolate. Or Myfenax, you know, their genetics name is Myfenax but it’s mycophenolate really, that was the one that I was given. They were very tough at the beginning, you know? They were, really, really made me feel, you know, palpitations. You know, I’d stand up and I would faint and I would just, you know, just very, very tough. And when she increased them three years ago, I cried really, because I thought, you know, I can’t take any more of this drug you know, please don’t give me and she said, Look, we’ve got to She said, Because you’re going to keep having these relapses and we’ve got to stop them So, she didn’t give me the full dose, she said, Look, I’ll give you another half dose ofrdquo; you know, the next bit would be the full dose but I’m not on the completely full dose because she said, I know you can’t take any more and my body just couldn’t take any more.

But I’ve also got to say, the pain, the pain of the nerve damage, nobody could describe it. it’s unbelievable. And again, I tried all the different nerve painkillers, and I had a reaction to every single one of them. I ended up in hospital, one of the painkillers, I don’t even remember leaving the house, I was taken in an ambulance. The other painkiller, I was covered in a rash from my head to my toe. Another one, palpitations were so bad I had to come off them, so I ended up with no painkillers for the nerve damage. But then one doctor gave me patches, which he said were very expensive, and they were the first thing, but I used – you only put them on 12 hours on and 12 hours off – and I used to sit and just wait for the 12 hours so I could get them on again. But eventually all that sort of calmed down and just, so this is where I am.

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Brenda couldn’t drive until the nerve damage from her vasculitis improved. She now uses an automatic car.

Age at interview 75

Gender Female

Age at diagnosis 69

Well, I couldn’t drive for two years because my feet couldn’t feel the pedals. I had no sensation in my feet so I couldn’t drive, that was another trapped’ [laughs], I couldn’t get out. And then when I started to feel a bit better, I have some more feeling in my feet now even though they’re numb – it’s hard to describe – I have feeling in them. So, then I started to go out for little drives to see how I would manage, and I’m fine now driving, absolutely fine. So, I’ve no – no, I don’t need any adjustment, but I did buy, because of my hands go numb and sometimes go into a bit of a spasm, I did buy an automatic a couple of months ago. So, I thought, you know, long-term and also because my left foot is my worst foot. My left foot and my left hand are the two, you know, worst parts, so it means I don’t need my left hand for the gearstick, and I don’t need my left foot. So that’s why I decided to buy an automatic, so, you know, it makes life a lot easier.

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In spite of numerous investigations, doctors still didn’t know that Brenda had polyarteritis nodosa (PAN), a type of vasculitis.

Age at interview 75

Gender Female

Age at diagnosis 69

So, I went to A&E and I was admitted immediately. And they said my inflammation markers were so high, they’d never seen anybody coming in with inflammation markers so high. I was then transferred to one of the bigger hospitals and they couldn’t find anything wrong with me. So, I stayed at that bigger hospital but because the beds were in such demand – I mean, they couldn’t see anything wrong with me, so they transferred me back to the local hospital.

In the local hospital I was given, I’m sure, ten different antibiotics, one after another. Nothing worked. I was sent for PET scans, ultrasounds, MRIs. Now, we live in Northern Ireland, I was sent to Dublin, to a big specialist hospital in Dublin for special scans. I was, had a heart echo, I had every sort of – I mean, the National Health Service, it must have cost them a fortune. I had every sort of scan or anything. I had a biopsy on my artery here [points to head] which was really very scary, and during all this time my blood pressure was really dangerously high, and they couldn’t get it down.

So, I was in hospital for six weeks and I was dismissed, and no diagnosis. So, they said the inflammation markers had come down quite a bit, so they were happy to let me go, but they didn’t know what was wrong with me.

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Brenda knew immediately that her vasculitis was relapsing, as the symptoms were the same as before.

Age at interview 75

Gender Female

Age at diagnosis 69

And I was absolutely fine then, I was still on the steroids, still on the immunosuppressant drugs, and they decided to reduce the steroids and take me off them.

And they took me off them after three years and I had a relapse. But once I had the relapse, I knew what was wrong. Because how I know now is, my temperature spikes – I forgot to say in the hospital, every day my temperature went up at lunchtime. Went high at lunchtime. It wasn’t there in the morning, went up at lunchtime very high, and I would night sweats. I would have gone through four or five nighties a night, just absolutely saturated. And that had been going on from the April. So, I’d had six months of that, every night, and this spiking temperature.

And when the spike in temperature spiked, I was really, really unwell, but when I’d get up in the morning, because the temperature had gone down, I was feeling all right. So, when I had the relapse, I knew immediately what was wrong because it started with the spiking temperature, it started with the night sweats, feeling absolutely really unwell, couldn’t get up the stairs. And I went to the doctor, and he told me to go home and take a paracetamol and stay in bed.

So, I then did that for about a week and then a doctor gave me an antibiotic for another week, he said, Try this to see if this works I knew it wasn’t going to work and took the antibiotic for a week and I was really, really ill. And I phoned the hospital to see if I could get in touch with the consultant, but I couldn’t, so eventually this one doctor said, he said, Look he said, I think we’re just going to have to hit you with a high dose of steroids to see if this is going tordquo; I had reduced my steroids down to about five, and he said, Look, we’ll hit you with a high dose and see if this works

And it did. The next morning, I could get up and go for a walk. It was so sudden. The high dose of steroids just completely made me well and I was able to go for a walk the next morning. So afterwards he said, he said, We just got this in time But that was after a month of being told it was a virus, just go to bed with paracetamol, take this antibiotic. And I knew from the beginning what it was.

So, thank goodness, from that date, I went back then to the rheumatologist, and she increased my immunosuppressant drugs. And she said I will be on those for life, and I will be on the steroids for life. I am not to come off them.

So, I’m on low dose of steroids and quite a high dose of immunosuppressant, and I’m on blood pressure tablets which, thankfully, now have, you know, calmed my blood pressure. So, you know, that’s three years ago and I really am feeling well.

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