Posts Tagged ‘JRA’

Despite only having to wait a few days to start this new line of treatment, today could not have come fast enough for me! I’ve had a horrible few days pain-wise, which has even made me wonder if the Tocilizumab was doing more harm than good, but I guess that doesn’t matter now.

We set off from home at about 9.30am and arrived on the ward at 11am. I was shown to my room and my nurse came to cannulate me and take the usual blood tests and observations; I also had to be weighed, since the dosage of the Infliximab would be worked out from this. The normal dose is 3mg-5mg per kilogram body weight and I received 600mg, weighing 60kg so quite a hefty dose of 10mg per kilogram! I was also asked a number of routine questions about infections etc, since it was my first infusion, but there were no problems and, once my blood test results came back, I would be hooked up as planned.

After some lunch, my Rheumy came to see me to see how things were. Obviously not much had changed since Friday, but he did explain that it would take a couple of infusions at least before we notice any improvement and reassured me he’d be able to help me out short term for our weekend in Dublin at Easter if things weren’t better by then. I am to keep up with the Cyclosporin alongside the Infliximab, rather than the usual Methotrexate. When I was in hospital, they checked the levels of this is in my blood and it was lower than expected, so it looks like the Gastritis had affected the absorption of my oral medication. I also had a chat to one of the nurses looking after me, whose 17 year old son has Rheumatoid Arthritis. He currently sees my previous Paediatric Rheumatologist, Eileen Baildam, but will have to change to an adult consultant soon. She said that seeing Dr Snowden’s care of me has convinced her that he is the doctor for her son too, so that was nice!

It took a couple of hours for all of my blood test results to come back, but at around 2pm my nurse returned to give me a couple of meds that I needed before the Infliximab; there is a higher chance of allergic reaction with this drug than other biologics, something I was a little bit concerned about because I have serious allergies to a lot of antibiotics. As always, prevention is better than cure, and so they give you a couple of things to try and reduce the chance/symptoms of a reaction. Firstly, I was given a shot of IV anti-histamine and then a substantial dose of IV hydrocortisone; once they had been flushed through it was time to start the Infliximab / Remicade infusion.

The Infliximab came in a single bag, set to go through the line over two hours. The nurse sat with me for the first half hour to make sure I was okay; I did feel quite drowsy but then we realised that Anti-histamines can have that effect too, plus I could just have been tired after not sleeping much the past few nights. I had my observations – Blood Pressure, Pulse Rate, Breathing, Temperature – taken every half an hour throughout the infusion and during the time that I stayed afterwards. My heart rate dropped a little bit (to within a normal range considering that it’s usually high), but everything else was fine. The infusion finished after just over two hours and then there was an extra half an hour for the saline bag to flush it through afterwards. We then stayed for about two hours so that they could keep an eye on me and make sure I didn’t develop a reaction, although this is more likely to happen early on or during your second infusion. Better to be safe than sorry though.

Apart from still feeling very sleepy, I was fine, but they told me to ring the ward straight away if I had any concerns. We left the hospital at about 7pm and had a 90(ish) minute drive home, so it was a looong day for both of us (nearly 12 hours!). As a well-earned treat we stopped off at Domino’s Pizza on the way and ordered 3 courses – A Chicken & Wedges share box, a Medium Stuffed Crust Pizza each and Cookies to share – not something we do very often but it was just what we needed and really hit the spot, plus there’s enough left over for lunch tomorrow!

I feel like I’ve lost a whole day, going from bed – car – hospital – car – bed, but hopefully it will not be a day wasted. My next infusion is in a fortnight’s time and then six weeks after that; eventually they will be once every eight weeks, which will be less hassle than once a month at least. I know I keep saying it but I really, really hope that this is the one to turn things around. I feel so ready to get back on my feet, to get stronger and build myself up even more than before and then to put my mental energy to the blog and other projects I have in mind.

I guess only time will tell though,


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According to the article, the drug known as RoActemra or Tocilizumab has been approved for usage in children over the age of 2, who are suffering from Systemic Juvenile Idiopathic Arthritis, or Still’s Disease, in the EU.

This is very good news, as I have heard nothing but good things about the drug so far. I also have a fellow Still’s buddy who is doing very well on it.  Only recently, I posted about an article on a young girl who had been refused funding for Tocilizumab by her local PCT, one reason being due to her age.

I hope that the news gives this family, and others, another treatent option and, more importantly, some relief.


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I wanted to post this article  since this young girl seems to have some sort of Juvenile Arthritis that could be connected to Still’s Disease – plus she is pretty local to me too; in fact Alder Hey Children’s Hospital is where I got my very first diagnosis at age 3.  She has responded very well to Tocilizumab and isn’t the first, from what little I know of the drug, which is always good to hear!


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