Jeremy
Jeremy has microscopic polyangiitis (MPA), a type of AAV affecting his kidneys. The kidney problem was picked up at an annual heart condition check-up and his vasculitis remains “relatively benign” thanks to timely treatment to suppress his immune system.
Jeremy is a retired railway consultant who still takes on occasional projects. He lives on his own. Ethnic background: White British.
More about me...
Aged 57, an unknown problem with high blood pressure meant Jeremy developed heart problems and needed a bypass. He describes how, since then, he has looked after himself – exercising, eating a healthy diet, and taking medication as prescribed. He also now attends annual health checks, which include routine blood tests. His vasculitis was identified following an unexpected finding in 2014 that something might be wrong with his kidneys.
Jeremy has microscopic polyangiitis (MPA), a form of vasculitis that has affected his kidneys. Although very happy with the care he receives, looking back he would like to have felt more of a sense of urgency in the early stages as he did not start immunosuppression treatment until 10 months after the initial blood test. He would like more recognition among GPs and hospital doctors that, when someone has kidney problems and is identified as ANCA positive, “we need to get on and do this.”
Jeremy credits a particular consultant with explaining - in Plain English and using a sketch of the kidneys – what vasculitis is and the limits of knowledge about how to treat it. This helped Jeremy understand the importance of the initial treatment to hit the vasculitis hard, followed by maintenance treatment to keep it under control. He also answered Jeremy’s questions which, although he doesn’t consider himself a worrier, provided reassurance when it was needed.
Asking questions, learning about his medical conditions, and being disciplined in taking medication helps Jeremy “take ownership.” He feels this puts him in a better position to judge the seriousness of a flare and gives doctors confidence that he will follow their advice. He values being able to access his blood test results on an online system commonly used by renal (kidney) services. He has also been able to correct errors on the GP equivalent which he hopes will prevent inappropriate treatment in an emergency.
Compared to his heart condition, vasculitis feels more uncertain and can’t be addressed by lifestyle changes. Jeremy checks himself for the rash which can indicate vasculitis is active, and tries to be prepared; he tells the story of having a flare on the other side of the world but, because he could email his consultant and had taken steroids with him as a precaution, he was able to manage it. He values discussions with consultants about the pros and cons of different treatment options, which also led him to take part in a clinical trial of a new drug.
Jeremy considers himself to have a lucky streak, having reached the age of 72 with sufficient health for day-to-day activities. He knows from his career in public transport that the health service is a product of the interaction between “people, machines, knowledge” and that you can’t solve every problem. Based on his experience he would, however, urge people to go for health checks when they are offered.
Jeremy joined a drug trial as part of his vasculitis treatment after his consultant discussed the options.
Jeremy joined a drug trial as part of his vasculitis treatment after his consultant discussed the options.
And he discussed the options, which were either cyclophosphamide or rituximab, and explained that the cyclophosphamide was a long-established treatment, known to be very effective but could have a lot of unpleasant side-effects. Whereas rituximab was a much newer drug and that was – so it wasn’t as, it wasn’t as certain to be effective, and, but it would definitely have fewer, possibly no side-effects. So, my response was simply to say, “Well look, if we go with the one that’s more effective, the cyclophosphamide, but I find I can’t tolerate the side-effects, can we stop that and switch to the rituximab?” So, he said “yes,” in which case in my view, it was a no-brainer, one goes for the one that is proven.
So, we went on to the cyclophosphamide and he explained that in parallel with that, one would normally take steroids as well. He’d explained the, you know, the two stages of the treatment first in its initial treatment to hit the vasculitis hard, to try and suppress it, and then to be followed by the maintenance therapy that tries to just keep it under, under control.
He’d obviously also explained that there was no cure for it because, so far, research had not found out what caused the problem. But again, he explained also, and I’m sorry I’m doing this sort of in reverse order, but he explained how it worked. What it did was cause the immune system to attack oneself rather than to attack external infections, so the requirement of all this treatment was basically to suppress the immune system.
Now, in talking about normally going on to steroids, he then spoke about a trial that was underway with an alternative to steroids, because again he explained that steroids have some nasty side-effects. So he was, had some involvement with this new trial of a new drug, and would I be interested in going on that? So, I asked the same question: if we go on that and we find it’s not working, can we switch to the steroids? You know, and again, he said, “Yes, we can. We can stop the trial at any time and go on to steroids.” So, I said, “In that case, we’ll go on to the trial.”
Jeremy found infusions of rituximab for vasculitis were “nothing to worry about.”
Jeremy found infusions of rituximab for vasculitis were “nothing to worry about.”
All I could say it’s what one sees on various hospital programmes [smiles], you know? You sit in a chair or on a bed and you know, they hang up a bottle, a drip alongside you and fluid is fed into whichever part of your anatomy they’re doing. In this case, and I think in many cases, it’s probably through the arm or like that. And you’ve just got to stay reasonably still while it’s done, so, you know, take a book to read or something [laughs]. Cos it might last hours with rituximab, but I mean the cyclophosphamide sessions, I think, I can’t remember now. Certainly, no more than an hour. I think they might have been less than an hour, each session.
The rituximab, I was warned it could be, you know, five to six hours which it could have been. As things went fairly well with me and they were, and it didn’t cause any side-effects during the transfusion, they were able to gradually increase the rate of flow of those. So, I think they only took about three, three and a half hours on it, so that’s not a problem. Obviously, I knew to bring a book or my Kindle or whatever it was to keep me occupied. I knew to bring some sandwiches with me, because I had checked, you know, “Can one eat whilst doing it?” “Oh, yes.” And I knew hospital sandwiches weren’t something to rely on, even if they were offered, which they weren’t. They expect day patients to bring their own stuff in [laughs]. So that makes a very, sort of, you know, nothing to worry about.
Jeremy thinks he would get warning signs if his heart condition came back. With vasculitis he might not.
Jeremy thinks he would get warning signs if his heart condition came back. With vasculitis he might not.
Well, I think. With the heart condition. Once you become aware you have a problem, and in most cases that is going to be some sort of either chest pains or perhaps severe respiratory problem, getting, you know, very breathless and not being able to do strenuous things that you used to be able to do. Once you become aware of those things, firstly you should seek medical attention immediately because the nature of them is if you don’t seek attention, you are guaranteed the problem will get worse and worse. And the longer you leave it, the greater effect it’s going to have on your lifestyle, the greater the chance that it’ll kill you in short order.
With the vasculitis, or more particularly with the manifestation in my case, the damage, which was to the kidneys, this is symptomless. You don’t know it’s there. Once you do know it’s there... you’ll be told that there is no cure, you will be told that they can try and suppress it, and if you are lucky, it will remain suppressed if you take the right medication, it'll remain suppressed and not cause you any further significant problems. But. You know that it could flare up and start causing serious damage at any stage.
So, there are two lessons there, the, well, with both the vasculitis and, with the heart disease and the vasculitis, the upshot is you’ve got to keep taking medicines and you’ve got to discipline yourself to do that. With the heart disease, you will whilst you can’t guarantee that the problem won’t come back again, you can be reasonably confident that if it does come back again, you will get plenty of early warning signs in time to seek medical advice, and that they will probably be able to find some way of putting you back on an even keel without too much difficulty. With the vasculitis, there is the uncertainty that it could flare up very, very rapidly, possibly with you not even realising it, and then you’re back into a really potentially serious problem.
So, it’s a psychological thing that makes the vasculitis perhaps a much more worrying thing to be living with. The how you deal with that depends on whether you’re a worrier or not [laughs]. I’m not a worrier, my basic philosophy is never to worry about things you can’t control.
Jeremy uses the internet to find out more about vasculitis so he can be “an informed patient.”
Jeremy uses the internet to find out more about vasculitis so he can be “an informed patient.”
So, when it came to the vasculitis, then yes, trying to understand what it was all about, I found was the right thing to do. So, make myself, I think what they call an informed patient.
With the internet, that’s something you can do. Pre-internet days, this would have been impossible, quite impossible. With the internet, you can do it. You need to understand that you’ve got to be careful about what you’re looking at on the internet, you’ve got to apply judgement, “Is this sound stuff?” “Is this coming from a reputable source?” “Is it British or European or is it American?” Because things in America are different and the whole way they go about the health service affects the way they treat things, so be very careful about seeking guidance from American sources.
The, I think if you are an informed patient and you do ask questions, I think that’s helpful to the doctors because that gives them the confidence that you understand the need to follow their advice and you will do so. You won’t be one of these people who, “Oh, I forgot to take me pills yesterday and I can’t be bothered to do this exercise,” or whatever. “Oh,” you know, “There’s an appointment up for me, I can’t be bothered to go.” They could be confident you’re not going to be like that. And if people who are like that, obviously add to their own problems but they’re adding to the doctors’ and the nurses’ problems as well, which is wrong.
If Jeremy’s vasculitis consultant wasn’t such a skilful communicator, “I might have been very worried.”
If Jeremy’s vasculitis consultant wasn’t such a skilful communicator, “I might have been very worried.”
I can’t, you know, if he’d been vague and not been able to, you know, explain what this disease was and how it worked and what the limitations were in their knowledge or ability to treat it, if he’d not come across lucidly, clearly, in plain man’s language, the fact that he drew a little sketch of the kidneys to show, you know, to illustrate what would work, if he had not handled that without the skill that he did, then I might have been very worried.
I suppose the other – and I would add to that again from what he said, the main worry when he spoke about kidney damage and how, the fact that within, you know, the space of a very few weeks, the blood tests had shown a sharp decline, my main worry was, well, two worries, really. Firstly, would I have to go on dialysis? So, I asked him about that, I said, you know, “What’s the likelihood of me having dialysis?” and the answer he gave was very, very reassuring. Because it was quite simple, he said, “It’s not on the horizon.”
The other question that concerned me was, which is related to that, obviously, if there is an issue of kidney damage, is this something I should tell my brother about? My brother’s older than me, if I tell my brother about the kidney damage, that raises in his mind the possibility at some stage of needing a transplant, he would be the obvious person to be a donor.
For him, for me to tell him about kidney damage would put him in a position – possibly needlessly, but put him in the position of effectively being faced with a personal moral dilemma. You know, how would he react if that eventuality arose?
So, I asked [my consultant], “Is the vasculitis, is there a genetic element in this?” If there was a genetic element, then I will tell my brother because the message would have been that he ought to get himself checked out. But fortunately, [first name of consultant] said, “No, there’s no genetic connection,” so it was then an easy decision. I’ve not told my brother – I think I have now, because I can reassure him, you know, I can explain it in a way that shows there’s absolutely nothing to worry about. But that’s only recently. At the time I didn’t tell him. Deliberately. And again, the assurance that [first name of consultant] gave me on that was instrumental there.
So with those two things, no. Number one, that dialysis, as he said, wasn’t on the horizon. B, there was no genetic element. I didn’t see any reason to worry about anything. He provided me with all the reassurance that I needed. And, you know, that’s the obvious impression I got of him, that he was a man who knew his stuff.