A-Z

Systemic Vasculitis

Living with the practical impacts of systemic vasculitis

This page is about:
  • Independence and systemic vasculitis
  • Travel and systemic vasculitis
  • Driving and systemic vasculitis
  • Physical activity and systemic vasculitis

Independence and systemic vasculitis

People told us how important it was to be independent. However, having vasculitis often meant they had to:
  • Rely on others more than before and ask for help
  • Find new ways to do things using gadgets and adaptations
  • Accept there were things they could no longer do 
 

Vasculitis affected Charlie’s windpipe and voice. He often depended on his wife to speak for him.

Vasculitis affected Charlie’s windpipe and voice. He often depended on his wife to speak for him.

Age at interview: 28
Sex: Male
Age at diagnosis: 27
AAV (GPA)
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And then after that, I continued to have, my breathing was better, but I was starting to get a loss of my voice. What that meant was that on some days I would have a voice, on other days I would have no voice, I would often have to mouth or lipread and my wife would tend to have to speak for me. And at some points, in January, I ended up really just being mute and not able to speak at all.

And I was, just after that point, my daughter was, was born and during that whole period in hospital and everything around that, I couldn’t speak. And my wife had to speak for me, even through all those points, or I had to try to gesture.

And this was a, kind of an effect of this subglottic stenosis, and stopping any air kind of going above the tracheostomy.

 

Sharon wants to be independent in spite of vasculitis, but “nip to the shop” can be too much.

Sharon wants to be independent in spite of vasculitis, but “nip to the shop” can be too much.

Age at interview: 49
Sex: Female
Age at diagnosis: 43
AAV (MPA)
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And you mentioned earlier about driving the minibus. Are you restricted for driving now, or is that okay?

No, I can, I mean, I still have my licence and so I’ve declared – well, I’ve not had to declare to DVLA because there, there’s not a box to be ticked on that, but I do limit it. I am the passenger unless everybody else has been to an event and I’m the only person – because I don’t drink, so I’m then the nominated driver, but it’s few and far between. And, and some days that could be absolutely grand, or even, I might think, “Oh, I’ll nip to the shop and get the shopping,” or whatever, to do the supermarket. And I can drive there, I can push the trolley, and I’ll be halfway around the shop, and then trying to pick up the next carton of milk and it’s just, it’s a step too far, you know? By that point, the joints have gone or the fatigue’s set in, or the whatever. And then, then it’s an issue to, to continue with the shop and drive home, so my family have now got to the point where it’s, “Just don’t bother, mum. It’s more hassle than it’s worth [laughs]. We’ll just do it.” Which is not pleasant because you want to be independent. But. It’s probably less of an intrusion in their lives to pop and get some shopping, than to say, for me to phone from the town and say, “Can somebody come and get me?”

 
When Wendy had a vasculitis relapse, her son helped her make a list of everything that needed to be done and work out who would do it. She also uses a disabled parking badge and shops online. Gail prefers to do things herself but asked a family member to go under the sink to deal with a loose tap as, “I can’t get down because I’ll not get back up [laughs].” To help them do things in spite of their nerve damage, Brenda bought comfortable shoes and handwarmers and Isabella a vegetable chopper. Holly can do more now she has a shower seat, wet room and wheelchair, but vasculitis has brought with it “a great sense of a loss of independence, which isn’t nice.”

Travel and systemic vasculitis

Peter, Graham and Brenda were disappointed that vasculitis stopped the long-distance travel they previously enjoyed. Angharad was among others who felt that travelling was worth the extra planning and effort involved. 
 
 

Vasculitis meant Peter had to give up motorcycling and long-distance travel. This is “painful.”

Vasculitis meant Peter had to give up motorcycling and long-distance travel. This is “painful.”

Age at interview: 67
Sex: Male
Age at diagnosis: 50
AAV (MPA)
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Physical things like motorcycling, bowling, swimming, I was quite a, an active person, physically active, and it’s pretty much, it’s pretty much put a stop to all of those things. I did try, two years ago, in fact, to maybe see if I could do some of these things again, and I even went to the point of buying another motorcycle. And, because I wanted to prove a point to myself after 40-odd years of riding, and I think I was right to do it because I took it out one day and I brought it back, and I didn’t ride it again. Because I knew that when I put it in the garage, I was doing the wrong thing.

So that kind of thing is painful, the one thing that is now restricted which is very painful, is the fact that I can’t travel as much as I like to. My wife and I, for many years, have enjoyed travel.

As I was saying, we were in China for three weeks the year that I got vasculitis. And we’ve been to quite a few other places and we like to travel and see the rest of the world. Now, that, in a lot of cases, means long-distance, and I’m advised now that that’s maybe not such a good idea. For various reasons. Where the vasculitis is concerned, if I lose my medications or whatever, they’re going to be difficult to get hold of in maybe foreign countries. And if I had chest problems, it might be difficult to get that treated if I’m in far-off countries. So, there’s some places that I would have liked to have gone to that I can’t now, so.

 

Because she has vasculitis, Angharad has to plan carefully and book assistance when travelling overseas.

Because she has vasculitis, Angharad has to plan carefully and book assistance when travelling overseas.

Age at interview: 29
Sex: Female
Age at diagnosis: 24
Takayasu arteritis
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Ibiza was like the first time I went away on my own, but not, not my own, with a friend, but the first holiday I sort of went on since, from being diagnosed and it was, I guess a nerve-racking experience because obviously when you travel you’ve got to factor in, “Well where are the hospitals in relation to where I’m staying?” Obviously, the travel insurance, there’s a lot of things to sort of factor in, “Is, was the hotel, like is it on a hill, what’s the immediate surroundings like?” You know there’s a lot of things that I need to consider before I can agree to sort of go, go somewhere. We decided that we wanted to go on holiday somewhere and it took a long time to sort to settle and agree on a place to go.

I went away to Australia, for a couple of weeks, which was I guess the big test, and that you know, that did require a lot of planning, staying in places where, that was accessible. I stayed in hostels, I tried to make it as cheap as possible. I requested, because obviously you’ve to share in hostels, I requested bottom bunks. Most places did do that.

One place didn’t and the top bunk was the only one available and that was incredibly difficult, and I hurt myself trying to get up and down that, but the following day one of the people on the bottom bunks left so I took her bunk as soon as soon as I could, just threw everything off the top of mine [laughs] and just so I could, because otherwise I don’t know how I would have sort of managed that.

And again, in terms of Australia, where I went was quite flat? I went to Perth, that’s relatively easy to navigate, and because I was on my own, I could take my time. I wasn’t constrained to anyone else’s schedules, I didn’t have to do things that I didn’t want to do, it was all at my own pace and I think that’s what really helped me enjoy it a bit more because, after a couple of days with my friend in Ibiza I think we wanted to murder each other, because it was how we sort of are.

So yeah, I think one of the things I found difficult was I’d requested sort of, assistance with the airlines. So, I flew with the same airline throughout the whole trip so, because I went to different sort of cities and at Heathrow, you know, when I first left it was great, there was no issues. When I got to Perth, I, it was just a case of, that judgement of “Oh, right,” like, they look at you, see you’re young and be like, “Oh, why do you need help?”

 
In addition to financial considerations and how easy it was to get health insurance, people told us their decisions about overseas travel were influenced by:
  • Advice from doctors
  • Their age and general health (and that of their travelling companions)
  • How comfortable they felt about managing their vasculitis and medication and how easily they could put things in place to help them get about
Brenda said she has “been told I can’t travel outside of Europe or North America.” An occupational health doctor suggested to Diane that long-haul flights “wouldn’t be wise,” but she has found it works if she takes precautions and allows for being exhausted from the journey. Isabel is planning a cruise as she feels well, but Graham and his wife have “both decided that we’re just not fit enough.” 
 
Nicky did most of her travelling before she knew she had vasculitis, but now takes precautions due to her increased risk of a deep vein thrombosis (blood clot). On a flight to New Zealand, she wore support stockings, walked around the plane, kept her toes and legs moving, and didn’t drink alcohol. Jeremy went to Australia and took extra steroids in case they were needed. His vasculitis rash flared, so he emailed his consultant who said to increase the steroid dose and come in for a review when he got back. Gail is planning a trip to America with a friend and has bought a mobility scooter that can go in a car boot. 

Driving and systemic vasculitis

Although a number of the car drivers we spoke to were still driving, it was common to hear that vasculitis had placed limits on it. Dean, for example, can’t drive for as long as he did before. 
 
 

As vasculitis has affected Graham’s vision, he has to drive slowly and carefully.

As vasculitis has affected Graham’s vision, he has to drive slowly and carefully.

Age at interview: 81
Sex: Male
Age at diagnosis: 71
GCA
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But it’s the effects it has on your lifestyle, the field of vision is reduced, I have parallax. I was incredibly lucky – well, I say lucky because I know I’ve been lucky - because I passed the independent test for driving. And I, I know of other people – in a club I’m in - the same age who have been told you can no longer drive. Anyway, they were a long time making the assessment, it was a board of doctors, and they said, “Yes, you can drive. You must notify us if there’s any impairment to your remaining vision and you must have a test every year.”

And the optician does the test now and the last one was 20-20 vision in my remaining, my remaining vision. I do have to be careful because the field of, of vision is reduced, I have to move my head around, use mirrors, don’t drive as fast, and live with it, you know?

Some people often say, “Why do you drive so slowly?” If I was out on hill walks and my turn to drive, they’d say, “Why didn’t you overtake that car? Why did you stay behind that lorry?” I’d say simply, “I’ve only got single vision and it’s, I don’t, I’m not so confident.” Age aside, aside, you know?

 

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

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

Age at interview: 75
Sex: Female
Age at diagnosis: 69
PAN
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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.

 
Like Brenda, Gail has nerve damage. She didn’t drive for six months as she couldn’t use foot controls. This made her “really dependent on friends.” Through a government scheme that helps disabled people lease adapted cars, she now drives with her hands. Although it was “scary” at first, “the car is amazing and I don’t rely on people, I just do everything myself.” Angharad’s car “has essentially been my lifeline.” She’s glad that vasculitis hasn’t affected her ability to drive but has a steering knob to help with the physical effort of turning.
 
People who could no longer drive felt the loss sorely. To see a physiotherapist eight miles away, Lynn now had a “walk down to the bus stop, a bus out to the city and then a twenty minute walk up to the hospital.” Richard’s wife drives, but he finds it “frustrating having to rely on folk for help.” 

Physical activity and systemic vasculitis

We often heard that vasculitis put a stop to physical activities people enjoyed. Pete’s “favourite pastime” was mountain hiking; now, “I can go out today and walk for five miles and feel neither up nor down, but if you put a hill in the way I struggle.” Because of the infection risk, Melissa and Wendy can’t go swimming. Gail stopped line dancing due to nerve damage in her feet. Graham gave up golf and bowling as he couldn’t see properly. Wendy and Angharad can’t walk their dogs as often or as far as they would like. 
 
It was also common to hear about people returning to physical activities once their vasculitis was treated.
 
 

As her vasculitis recovery continues, Isabella is enjoying outdoor exercise and using a fitness monitor.

As her vasculitis recovery continues, Isabella is enjoying outdoor exercise and using a fitness monitor.

Age at interview: 68
Sex: Female
Age at diagnosis: 66
AAV (EGPA)
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So yes, my other, my daughter was saying to me, while that, although I’m doing a lot of walking and certain exercise – you know, I move around a lot – I don’t get the heart pumping, so maybe I should do a little more exercise where the heart is pumping. So, I’m going to try that a bit more, because I haven’t, you know.

What do you fancy trying?

[Laughs] I might do a little burst of running and then walking slowly [laughs]. I did that yesterday, and going uphill, I was saying to my husband, “Oh, the fastest my heart is going here is one-o-seven, that’s no use,” because the daughter, who’s super fit, is saying, “You have to be up to a hundred and twenty.” So, the last wee bit getting back to the car, I ran, and it went up to a hundred and forty-seven, so [laughs] maybe I’ll do a bit more of that.

Do you measure – I mean, do you measure things to do with your fitness? I mean, I was just thinking, when you were describing all these exercise sheets and the gardening and the out for an hour every day, I thought, gosh, that must take a huge amount of discipline.

[Sighs] I’m not very disciplined in one way. I’m not the kind of person who does the same thing at the same time every day, you know? Every day, and the same thing. I’ve got a Fitbit so that’s how I was checking my, my heart. But I quite enjoy doing these things. I think that’s the main thing, is that I enjoy doing them. So, I don’t feel that it’s difficult, you know? I like being outside.

 
Often physical activity was part of a plan to improve fitness, with some people hoping it would help them lose weight. Karen joined a gym and worked with a personal trainer when “suddenly something twigged in my head that I’ve got to change and I’ve got to sort of try and embrace life again and become fitter.” Jane X does aerobics classes, Nicola had started running again, and Dean goes to the gym. Gail uses a treadmill, and Jane an exercise bike. Brenda has been skiing and plays golf. Grant misses football and other sport, but is “working towards trying to pick myself back up” in terms of fitness “as and when my body will let me.” Some people who have gardens used this as an example of physical activity they enjoy, although not for as long or to the same extent as before. Richard used to be able to do a day of gardening and now “two hours will be the limit” as he doesn’t have the same stamina. 
 
Diane, Angharad and Lynn have problems with their heart as a result of vasculitis. All wanted to return to the exercise they enjoyed but had lost confidence. Specialist rehabilitation and ‘exercise referral’ schemes made a difference. For Lynn “it was just the most fantastic thing because it was about reclaiming Lynn, reclaiming a part of me that I thought that I’d lost.”
 
 

Vasculitis damaged Diane’s heart. Supported fitness schemes helped as she was “afraid of exercising.”

Vasculitis damaged Diane’s heart. Supported fitness schemes helped as she was “afraid of exercising.”

Age at interview: 39
Sex: Female
Age at diagnosis: 30
Takayasu arteritis
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I did do, was it six-week or eight-week cardiac rehab course? Now, my consultant had said, “Look, this is more for people that are maybe a wee bit older, that have had, you know, bypass surgery. But, you know, if you think it’s going to help you, by all means do it.” Now I did it and I was obviously one of the youngest ones there, [laughs]. The next person was maybe in his… I was sort of in my 30s, he was maybe in his early 40s and then everybody else was sort of 60, 70-plus.

But it was, it was good because I was afraid of exercising. Because I didn’t know my limit. So, they had physios there, they had occupational therapists there to help you, they done like a wee mini fitness circuit and they let you, monitor, monitored your heart rate and took your blood pressure before and after, and they made sure that you didn’t go past your limit. And so, you could almost… it allowed you to gauge how much you could do, and, and know your limit. So that made, that made things an awful lot easier because you weren’t afraid to go out for a walk anymore, you weren’t afraid to, you know, go, go to the gym and maybe do the, the treadmill or the, I love the, I loved the cross-trainer whenever I was at the gym, so there were all of those.

And then after your six-to-eight-week cardiac rehab, then there was a scheme called the Fit and Well Scheme that you could go and do. So, there was about six or seven of us from… because we all formed, you know, a friendship. And then we went, and we done the Fit and Well Scheme and then it kind of ended and then you were kind of left, “Oh dear, what do I do now? I’m on my own.” So, I maybe… then, at that point I think I was going back to work, so I didn’t really probably follow it up and continue, you know, as, as much as I probably should have.

But it sounds like it gave you what you needed at the time.

It gave me confidence, yeah. Yeah, definitely. And it also, you know, you had talks from dietitians and pharmacists and, you know, you picked up a lot of information from the cardiac rehab. And I have known a few people with cardiac – that have had cardiac surgery since and I’ve recommended that they go to it. So yeah.

 
Among the people we spoke to, Nicky and Charlie had unusual examples of the limits vasculitis can place on physical activity.
 
 

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.

Age at interview: 57
Sex: Female
Age at diagnosis: 48
Behçet’s syndrome
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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.

 
The tracheostomy in Charlie’s neck allows him to breathe but he can’t blow on his food, sip drinks, or use a straw. He also has to be careful with activities such as gardening because bending down or moving his head too much could “jar and move and change the device in a way that could be either very painful or limit airflow.”
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