Humira update – July 09

Just realised I hadn’t posted an update for ages to the blog that nobody reads

It’s July now and I still feel like a normal person – which is amazing considering how life was up until now. No pain to speak of, full mobility and a much bigger lust for life. I said that the proof would come when my next bad spell arrived, and how bad it was. Well it still hasn’t happened so I can’t tell you, which is of course great! With regard to my list of targets for the year, I’m right on track – doing a 36 mile charity bike ride in torrential rain was proof of how much better I am this year. Anyway, should the bad spell arrive I will post about it – hopefully it will be less bad than normal. As to the Humira – of course I hate doing the jab but it’s 10 seconds twice a month so I can’t grumble. Only side effect is a slight rash sometimes and so far I can’t praise it highly enough, it’s changed my life. Next year I plan to do the London to Brighton bike ride and I never thought I’d say that!

My goals for 2009 are…

I know this is a bit late but now I’m on Humira I feel I should have something to aim for this year. I love cycling for example, and would love to play snooker again. So without further ado, this year I aim to:

Complete the charity ride that my son, nephew and brothers did last year.

Ride to work one day (13 miles each way, and it’s hilly!)

Go on some proper long rides with my brother Keith.

Play snooker again with my mate Toby.

Really push on with my photography, especially portraits and urban decay.

Make some money from photography. Somehow!

Finally, just keep fit and able bodied where possible and happy.

In December I shall come back to this page and see how I got on…

First Humira injection done. What now?

Well the nurse was fantastic yesterday, made me feel totally at ease with the whole procedure and the injection was fine. So far a couple of times I’ve made the mistake of scratching the injection site which has made it very itchy for about half an hour, but it soon goes. Touch wood, so far so good. I wonder if it will help??

It’s arrived!

My Humira supply has arrived and is in the fridge. Hopefully the nurse will call soon and we can get injecting

So near…

Well last Wednesday my Humira was due to arrive, but of course the UK can’t cope with snow and my driver broke down on the way to me. Healthcare at Home have so far been brilliant though, very helpful and reassuring, and the drug should be with me this Wednesday instead, and the nurse will call this week as well. So fingers crossed next week may see me taking my first steps towards a slightly improved quality of life assuming that the Humira has some effect.

I wish I had something to report…

Well the pains in my side and back around the kidney area seem to have gone now I’ve stopped taking methotrexate, which is obviously a good thing. However, last week  I called the hospital to find out what’s happening with my Humira delivery date, and they never called me back. So this week I’ve tried again and there’s not even an answerphone this time! Gotta love the wonderful NHS. If I ever get hold of them I’ll let you know.

Update: Hurrah! Got in touch and hopefully I should get the call I need within a week.

January update

Well the new year is here but I’m still waiting to hear about my Humira supply. This post is more of a test of the iPod Touch WordPress really!

Further Humira update

Well I don’t have TB which is a relief They’ll check my x-rays but it’s a formality now, I just have to wait for the drug delivery company to contact me, and then have the nurse come round to check I’m doing it right. Slept better last night with less cramps, so hopefully the mtx is leaving my system for good now. Onwards and upwards!!

Goodbye Methotrexate, hello Humira

Well I was never sure of what it did, but I wake up every morning no later than 4am in terrible pain with abdominal cramps so that drug is not entering my system again, at the suggestion of my nurse. Anyway, the consultation went well, I go back on Friday to confirm the chest x-ray and TB test were OK, then I have to wait about a month for funding to be approved. I should be bitter perhaps about waiting again when I’ve worked for 21 years and paid so much tax and NI, but hey, I just want the new drug and another month is bearable. When I asked if the drug cost £10k a year she said it was more than that!

Once delivery has been arranged a nurse will then come round to check I’m using the injection pen properly – I played with a demo pen yesterday and it all seemed straightforward. Injecting doesn’t bother me, especially if the benefits are as good as I’m hoping for; finding a fleshy bit on my body may prove difficult though! I’m not building my hopes up too high, but it does sound promising and after the last six months I’d try most things to improve my quality of life. I want to get back to cycling and taking photos, both of which have almost disappeared since July; I’m just thankful to have the support of Claire, William and family when I need them.

Next update when there’s more news. Thanks for reading, you can go and do something more interesting now

Humira here I come?

So tomorrow it’s my consultation and hopefully it should be confirmed that I will start on Humira soon. Quite exciting though as ever I am trying not to build my hopes up too much. I’m writing this at 5am in great pain so some sleep would be nice in the future!