So it’s really frustrating. Especially when, with the first specialist because it wasn’t making any difference what they were doing with the different medications and then I got all the side effects with the Methotrexate and things like that. But it wasn’t making any difference to my knee, though I would have been fine to carry on with that like if they said, like you might lose your hair, but it will always grow back when you stop taking the methotrexate. But I didn’t care it was like if it works, I will go with it, I will not have hair. I don’t care if it gets rid of that.
But I started getting all the side effects and it wasn’t helping. It made no difference to my knee whatsoever. And then I went back to her to them and she then decided to take me off that and put me back on the original medication, but I’d said that obviously it’s really frustrating that it’s not making a difference, and I don’t know if they were just a bit blasé about it, and it was sort of like a, “Oh right, okay well that’s not working. Let’s go back to plan And try that again.”
And it was like yeah fair enough but what about me, what about the fact that I haven’t been able to do what I want to do for the last three years, and you haven’t made any progress with it. Which I think was my breaking point with the first specialist ‘cos I was like, “No, I’m not happy with this. You’re just treating me as bad really,” and it sounds bad but it was like ‘cos she sees people with the same problems every day it was like you were a number or a folder on the side. And it was all just a bit blasé and it was obviously, and ‘cos I’m so young so when you’re in the waiting room and everybody else there is 50, 60 years old and you’re there with the same problems, and then the doctor doesn’t understand and treats you the same, and just expects you to get on with it, it’s really frustrating and really hard to, it’s yeah.
Do you feel that now you’ve changed consultants that you’re taken more seriously?
Yes definitely. ‘Cos the specialist I’m seeing now also has, from what I’ve seen has another patient about my age. I’ve only ever seen one, ‘cos I was there at the same time sort of thing, but he could have more but I feel a lot more taken seriously in the things I say, they actually go, “Right okay, well if that happens do this. Make sure you’re eating a lot of oily fish. A lot of things like that and keep your iron up,” ‘cos I’m slightly anaemic as well, so like, “Keep your iron up ‘cos if your iron’s low then your blood cells are going to be low and that’ll affect the medication.”
So they’re actually like you need to do this and this, and we’re gonna do this and this. If that doesn’t work you can look at instead of taking the methotrexate in a pill form, if I start to get the side effects again they were like well we can stop that and you could have it injected instead. Which should stop the side effects because you’re not digesting it. And things like that.
And it’s like right obviously that sulfasalazine level didn’t work so we’ll up that, if that doesn’t work we’ll look at taking a different route with different medication and things like that. And also looking to put me on a physio course to try, even though I’ve got restricted use of my knee, to try and build up the muscle in it ‘cos that will help. So they’re a lot more informative and a lot more helpful as it were.