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Archive for June, 2012

Apologies, thought I’d posted this but it has been sat in my drafts for a month, oops.

I was well overdue my infusion by the time this morning came and couldn’t wait to get going. It’s like one of those ‘you know when’ lines: ‘You know when you have found the right treatment when you look forward to being hooked up to an IV for four hours’.

I arrived on the ward at about 11am and had the regular tests. I was a bit surprised to find out that I had put on even more weight since last time, when I thought I was losing it thanks to reducing the Prednisolone. I’m now 67.5kg, the heaviest I’ve ever been I think, (I was around 40kg at one point). Maybe I need to watch what I eat more closely? Although I stopped pigging out with the Steroid munchies weeks and weeks ago.

Anyway, my blood test results were great. My inflammation markers are still low and my anaemia improving, which are both signs that point towards disease control. The Infliximab was already on the ward, so it wasn’t long before I was hooked up and ready to go. The nurse did struggle to get a line in this time; even my ‘good’ vein is starting to shrink away and is difficult to cannulate, despite my attempts to plump it up with the tips outlined in this previous post. Eventually, some hot towels did the trick but I don’t want to think what will happen if they ever didn’t. I know a portacath was mentioned in the past, but hearing my friend’s experience with hers has put me off a little. Hopefully it’s not a decision I’ll have to make in the near future.

My Rheumy came to see how I was doing and was pleased to see me looking so well and off the crutches. I told him about the few little niggles I was having – not to put a downer on things, just to be honest. I said that I’d noticed some symptoms coming through from about 5 weeks post-infusion and so we have decided to try it every 6 weeks instead of every 8 weeks. Mainly though, he wanted to talk to me about work.

Its months since work last evaluated my situation and they have been in touch with my Rheumy for a report on my current condition. For once we have some positive news and can start to think about the possibility of returning to work with a ‘phased return’ and support from my employers. Obviously, this won’t be straight away. I need to improve my strength and stamina and make sure that I can maintain these improvements over the weeks and months to come. So we decided between us that September would be a good time to aim for, especially since working at a school it would mean a new year and a new start. So that is what I am going to aim for now, although we will be constantly reassessing this in case my situation does change.

The infusion went through without a hitch; I don’t even notice the hot flush and/or giddiness that I experienced during my first few. I left the hospital much earlier than usual, which was a welcome change, and am to come back for my next one at the end of July.

Hopefully, until then, things will just keep on getting better.

L

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It’s been 8 weeks since my last Infliximab infusion; they start you off with a loading dose every two weeks, then every four and finally it goes to every 8 weeks. I should have had the infusion today but my Rheumatologist was away and since we need to discuss a few thing we decided to wait a week (at that point I was doing fine).

I’m still doing much better and I’m really pleased we tried the Infiximab and with the results so far, but I think I might need it more frequently than every 8 weeks. By the time we got to week 6, I was noticing I was flagging a bit – feeling very weak and tired most days, to the point of falling asleep on the sofa unable to fight the fatigue. At first I put it down to being tired; after all I’m doing so much more than I’ve been able to in a long time, it’s bound to take its toll.

But over the past week or two, I have developed quite sore hand/finger/thumb/wrist joints. In the mornings my hands are like claws and take a while to unfurl. Even when they do, they remain sore the whole day and I’m finding it hard to type or use my phone. And now, the dreaded temps and Still’s rash have started to make an appearance every now and again. Boo.

I’m sure it’s only temporary and I’ll notice some improvement after my infusion next week. My Rheumy did say there was room to play about with the dosage/frequency of this drug so hopefully we will be able to adjust it to my needs. I’m sure it would be better for everyone to have me reach some level of stability rather than so many good weeks, with a couple of dodgy ones on the end of each infusion period.

For now, I’m taking things a bit easier and soaking my hands in warm water a few times a day to get some movement / relief.

L

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It was a year ago yesterday that I signed up to WordPress and wrote my first blog entry. A lot has happened over that year, so I thought I’d celebrate by posting some brief highlights and lowlights:

I have tried a several Biologic drugs, after stopping Enbrel last June – Orencia / Abatacept, RoActemra / Tocilizumab and Remicade /Infliximab, as well as switching back to Methotrexate for a short time alongside these. I saw small improvements in fatigue with Orencia but, surprisingly, Tocilizumab was not the miracle Still’s drug for me that has been with others and I continued to deteriorate physically until starting Remicade in March.

Back in July, I was Bridesmaid at one of my best friend’s wedding.

In August I had surgery for another health issue I was having, believed to be caused by longterm Prednisolone use, Hidradenitis. This left me with an open wound in my upper thigh / groin area for a few months and meant daily clinic visits and dressing changes but it healed well and was worth it.

In September I travelled to New York to celebrate another of my best friends’ 30th Birthdays, which was amazing! I would never have managed it without a big dose of Prednisolone, which shows I have a lot to thank it for, as much as I hate the stuff!

October Saw me swap Orencia for Tocilizumab and riding rollercoasters , which seems unbelievable now!  Unfortunately, it was down hill from there on and the next couple of months saw my joints deteriorate rapidly until I was eventually admitted into hospital in January / February, with Gastritis and potential Avascular Necrosis of the Hips.

Since being released from hospital in February, I have been on the road to recovery and am slowly getting back on my feet. Looking back to the worst of it I can see just how far I have come. There were days when I couldn’t even move an inch in bed by myself, had to have people wash and dress me etc, and relied heavily on aids and carers.  But slowly (thanks to the latest drug Remicade I think, as well as lots of Physiotherapy and Hydrotherapy too) I have regained some strength and mobility. By April, I was able to travel to Dublin to celebrate my boyfriend’s 30th Birthday and recently booked a trip to Paris for my own in July. Hopefully, this next year ahead will be an even better one.

There have been a few times throughout the year when I have felt very low for one reason or another and other times I have felt great and realised how lucky I am to have such supportive friends and family. I’ve tried to stick to my blog ‘motto’ , that there can Still be life with Still’s Disease, filling my time with things I enjoy, from watching films, reading books, painting and writing – to supporting football matches, travelling, going to concerts and having trips to the zoo or to the theatre.

And writing this blog has helped me a lot, in re-accepting my illness after a time of remission and being able to make sense of it by putting things down on ‘paper’. Most importantly, it has shown me that despite the pain and the struggles of the hard times, life goes on and I have to make the most of it.

It may be different, it may be hard, but it’s my life.

Thanks to everyone who has followed and supported the blog during its first year.

Stillslife

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