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Posts Tagged ‘PCT Funding’

Just a quick note to say that I sent my Rheumatologist a weekly update on my condition, which isn’t getting any better. My current joint count includes: both hips, but especially my left being painful and unstable, both knees being very swollen, sore and restricted, left elbow swollen, painful and very restricted, both shoulders painful with fluctuating levels of restriction, neck stiff and sore, left wrist and fingers starting to feel puffy and stiff and developing pins and needles through to that hand, both ankles feeling tight and the left side of my jaw quite painful and tender to touch. So, you can probably understand that my hopes for Tocilizumab ever working are slowly dwindlng away…

I said as much in my email to my Rheumatologist and was relieved that he feels we have given the current treatment combination enough time now and that he is looking into other options to see what we should try next. I have been on Tocilizumab for 6 months now; 4 in combination with Methotrexate and 2 with Ciclosporin. Blood test results have show significant improvement but my joints have definitely not; in fact, I am much worse now than when I started.  In his reply he stated that the next step will probably be a stronger anti-tnf drug; Enbrel worked for a long time, but I eventually formed antibodies against it. I know there have been a lot of advances in anti-tnf since then and so I am happy with this option.

I’m due for my next infusion on Friday and will see my Rheumatologist to discuss things further then and hopefully come away with a plan of action. I’m guessing I’ll at least have this last dose of Tocilizumab and then maybe we will start the application to fund something new. I also hope that they will be able to take some of this fluid off my joints, particularly my knees, to give me a bit more movement. Not being able to bend my knees or weightbear on my hips properly is certainly proving to be a challenge!

Until then, I’ll be doing some research of my own into the anti-tnf options available,

L

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I don’t know where this week has gone and can’t believe I’ve neglected the blog for so long, it’s not as if I have nothing to write about.

To update you on the Still’s situation I need to go back to mid-September and my last Orencia infusion, which was quite literally my last.  My blood test results weren’t looking any better at all and the fact that my knees were swelling for the first time in ten years seemed to prove a point; so, both myself and my rheumy came to the conclusion that Orencia wasn’t effective at treating the majority of my symptoms and never would be. Instead, he decided to put things in motion to start Tocilizumab (RoActemra) at my next appointment if the funding application went through fast enough.

I’m pleased to say that he emailed me at the beginning of the week to let me know that my local PCT has agreed to fund the switch to Tocilizumab and I shall be having my first infusion on Thursday 13th October, on the same ward as I’d been going for the Orencia. I’ve heard a lot of good things about this drug and so I’m trying to keep optimistic, although it’s hard to when I haven’t responded typically in the past.

My joints were in a pretty bad state when I saw him in September too, I was finding it difficult to walk/dress etc and needed a few cortisone injections – there were plenty of joints to choose from but in the end I went with my locked left elbow (hoping that some would travel to the shoulder/wrist) and my right knee (hoping it would help the hip too), which I needed to be up to walking the streets of New York. Thankfully, the injections and a short boost in prednisolone did the trick and there was only one time that I struggled on the trip.

Even the time difference didn’t send things flaring, which I had half expected because I know what a major role my sleep pattern plays in keeping me ‘well’. Usually, I only have to go to bed a few hours later and I suffer the next day – I can’t sleep in as that makes me feel rotten, but even if I did I wouldn’t feel any better.  But I managed to say awake for almost 24 hours on both journeys – must have been the steroid rush.

Since being home and reducing my Prednisolone, the aches and pains have slowly started to creep back in but I’m still doing better than I was last month and have been trying to make the most of it by sorting out a few things around the house.  I guess it makes things easier knowing that I’ll be trying a different approach next week.

I’ll leave it there for now and promise not to leave it as long in future – there is so much more I need to write about, not to mention catching up on my articles!

L

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