Systemic Vasculitis

So how often do you get these blood tests done?

Well, I’ve been getting them done every fortnight, because I’ve been reducing every fortnight. But when I get to the ten milligrams, I’ve just to reduce one milligram monthly. So, when I get to the ten milligrams I’ll be, I’ll go back to getting them done monthly. But my GPs practice is quite good, you know, they, they don’t mind doing them every fortnight. And it gives me peace of mind because as soon as I get a little ache I think, “Oh, I wonder if my bloods are up.” [Laughs]. Like I say, paranoid again, yeah.

So, I’m hoping that, you know, I’ll get to ten milligrams and hopefully get down to an acceptable dose because they say that anything over seven and a half milligrams is high, plus they’d, the, at the beginning they’d done a, what I worry about the most is the bone deterioration with steroids, and I think that’s one of the biggest things. But they did a bone scan right at the beginning and apparently my bone density was really good for my age.

So, when I spoke to the consultant on Tuesday, she was saying that “Normally we would do another bone scan 12 months after,” she said, “but I think we’ll look, I think we’re safe to leave it,” she said, “for another 12 months,” she said, “because your bones were so good.” In fact, she said that I had the bone density of a 21-year-old when they did it, so, which was good for my age, so.

But I don’t know whether the fact that I was on HRT has, I did mention that to the first consultant because he’d said about having to take this other horrible pill to protect your bones, and I said, “Do I have to take that?” [laughs] And he said, “Well it’s to protect your bones.” And I said, “Well, would the fact that I’ve been on HRT not give me some protection?” He says it would. And the reason I knew about that was because my mum had arthritis and she was - my age, she was in a wheelchair and I used to look after her - and her bones were really bad. I was told by a doctor that, you know, she didn’t have the benefits of being on HRT when she went into the menopause and things. So, I think HRT, if you’ve been on HRT I think maybe helps for the bones. Well, the rheumatologist did say, you know, “It would’ve given you some protection.”

You’ve had prednisolone and azathioprine, but then you’ve mentioned that there are other pills that you have to manage as well.

Yeah. So, like, I mean there’s just simple, simple things that you have to go on as a result of being on other medication, and that’s where you tend up, tend to end up racking up a lot of other medications. So, like I’m on like a stomach medication because being on that much prednisolone you kind of have to be on that. I’m on a, I think it’s a vitamin D and something else, it’s called Adcal, but it’s to protect your bones because the prednisolone causes osteoporosis, so I have to have that as well. I take iron tablets every single day because I’m very prone to anaemia, which is probably affected by the prednisolone and also just general being unwell, you tend to be more prone to getting things like becoming anaemic.

And then just, oh yeah, and then also I’m on a medication for my heart, which is the PoTS side of things, and then there’s like other medications as well, like simple things which you don’t technically have to take, but things like, you know, like a B12 spray to make sure I don’t, simple vitamin things which like as a person, maybe if you’re able to have a really good diet and lifestyle and exercise, wouldn’t be much of a problem, but it’s, you know I’m not able to do, able to get outside much and do exercise and things like that, and so you know I’m going to be deficient on certain things which maybe I wouldn’t be deficient on if I wasn’t on all the medication that I’m on and things like that. So, it’s one of those things, you know, you start one medication for one thing and then you end up racking up all these other medications which if you weren’t on maybe one of those medications, you wouldn’t need the other five or so things that you’re on but unfortunately because I’m on one thing it’s like, you know, I’m on the prednisolone so now I’ve got to take this stomach acid one and also take, basically have Gaviscon every single meal as a result, things like that, it’s like yeah. Yeah.

And, you know, I was discovering things like medication I hadn’t been put on that I should have been on in relation to the steroids. So, I was taking sort of things in, documents in, sort of trying to massage people’s egos [laughs] in order to try and, you know, try and say, “Look, I’ve been told this,” and then that’s fine, I would be given that medication. So, I kind of felt that it was very, very difficult. I was really keen to find out what was happening to me and how to - I didn’t even know if I could get over it, if it would get away - but I was keen to do whatever I needed to do to try and get back to health. And sometimes that was not welcomed. So, I’ll say that.

The other thing was that once I’d been diagnosed, it’s almost like, “Oh there’s your steroids, and away you go.” [Laughs]. So, I would get blood tests sporadically and I kind of felt as if I was pushing the machine myself. And I felt as if at one point, I was actually managing my withdrawal from the steroids myself.