And then in September of 2003, they had me in hospital to start me off on the Enbrel. I had twenty swollen joints at that time. So what they did is they started me off and I had like the first dose. And then I had a week of hydro, hydrotherapy and physio. And then I'd go home for the weekend. And they'd have me, they'd have me back for another week of the second dose. And then more hydrotherapy and physiotherapy.
And within two weeks, the twenty swollen joints actually reduced to like three. Everything just stopped aching. Everything, it worked really, really well.
I think I was on Enbrel for three years, until it started rejecting me. And the only reason it was rejecting, like my body was getting immune to it was because I kept getting tonsillitis. So I'd have tonsillitis, have my penicillin course, it would go away. And then like two or three weeks later, I would get tonsillitis again.
When you say that it worked very well for like about three years …?
Yes it did very well for about two or three years.
Tell me, tell me about that period, what were you able to do and…?
I was able to most things. I could walk without aids, obviously not long distance still because my hips were, my hips were stuck. So I'd still use wheelchair for long, long distance. But I could walk around the house. I could walk the stairs. Could I walk the stairs? Yeah, I could walk the stairs. I could you know, walk from say the car into the cinema, into the actual cinema, back out again and things like that. I could probably walk from my house to the corner shop just down the road, which was you know, quite good. And when we went into town shopping I could get out of the wheelchair, into each shop that we went into and look around and walk around and stuff like that. So it was, it did work. Very, very well. And then obviously it's, my body started to, "Hmm okay, we're used to this one now, we're going to stop. We're going to reject it." So they had Humira which they switched me to. I think I was on, I think it started to work at first, but it didn't work as well as the Enbrel first did. So I was only on Humira, for about a year and half, two years. And then they recently switched me back to Enbrel in June of this year. Oh no July of this year because by the time, you know, they got everything sort it out. So in July, I went back into Enbrel. It kind of worked to start with. And I then I think that my body thought, well no you've had this before, we don't want you to benefit from it. So it didn't work. I had a bit of a break.
Obviously, now like this I'm still taking it. It's not doing as good a job as it did the first time around. But I think it's taking the twinge away from the pain. So now they want to try me on Infliximab, which is obviously the last anti-TNF medication they're got on the market, at the moment. Which has to be taken with methotrexate, unfortunately.
Yes we saw the doctors in the hospital that I go to now, in [city]. A couple of weeks ago. He explained that they had the influximab was the last anti-TNF medication that you can get on the market. And he explained that it's intravenously and that they do it on the clinic. And you have one dose and two weeks later you come back and have the second dose. And they can usually tell if it works after two doses. Everybody gets a reaction after two doses. And obviously sometimes really, really good and sometimes not as good as you would've hoped. And you need more but usually you, you can, you get a kind of an idea if it's going to work after the first two doses.
You have to take methotrexate with it unfortunately. I know I don't like methotrexate. But it's only one tablet a week and its 7.5, which is way lower than what I've ever taken. Because obviously before I was on 25. And you take the methotrexate with it because it's stopped, the methotrexate stops it from rejecting. It breaks it's, influximab it's kind of like a medication that that has to be done intravenously because if you take it orally, your digestive system kills it, because I researched it all, when he offered to me and the methotrexate helps to keep it in your system so it doesn't reject… certain things. So they have to ask my local PCT… about obviously giving to me because it's expensive. And at the moment I'm just waiting to hear back from the hospital, if the PCT in [city] have allowed. And then obviously if they yes, then I start methotrexate. And I go up to the clinic as a day patient, to have the first IV.
And you know then I go every, then I go again in two weeks.
So I'm just waiting to hear back from them at the moment. |
