M31 0 Posted March 14, 2012 Report Share Posted March 14, 2012 Its quite a severe spinal disease and its finally caught up with me now ... all my younger life i was living life to the full and even much later ... much later. I think the biggest loss part of my life that is so debilitating these days is not the pain from my lower spine and neck but constant fatigue fighting AS all the time and trying to be strong. But after a long battle with the NHS I've been approved for the expensive medicine called Humira and i start its injections next week. I was first told about Humira about 10 years ago and how it as in testing worth a world cruise financial wise per injection (as if to make me feel guilty) But I've worked as long as I could as hard as I could in some of the most demanding jobs on the planet ... I've given it my all. Its not so much the pain this gives me as much as the relief from fatigue this disease I need from this new treatment ... sometimes I'll post something I think is important and I'll fall asleep and have to carry on a day later leaving half a post hanging ... thats embarrassing for someone with my pride. Everything I've talked about in my life is true and I've not started on my Biking days yet:) Sometimes you need to show how a spinal disease effects you though, Mick Mars' from the rock band Motley Crue is in exactly the same physical state as me now with AS ... I'm not a Motley Crue fan, just saying. Worth a look. Link to post Share on other sites
brett 2,314 Posted March 14, 2012 Report Share Posted March 14, 2012 I know about severe pain, so I feel for you. All you can do is hang in there and keep yourself busy with hobbies and keep an upbeat atitude. Hope the med's reduce your symptoms and my best wishes go out to you. Link to post Share on other sites
mutley 4,497 Posted March 14, 2012 Report Share Posted March 14, 2012 Hi Colin, Thanks for sharing that mate and I really hope the Humira relieves your painful A.S. Well done for sticking with it and getting the NHS to approve funding, you have to wonder sometimes if they have their priorities right. I hope we can carry on providing some diversion from real life agonies and feel free to PM me at any time for a chat. As I have said in a post elsewhere, I am only 3 weeks older than you, Iv'e had my troubles too but these chronic illnesses are literally a pain to deal with. All the best, Joe Link to post Share on other sites
dodgy-alan 1,587 Posted March 14, 2012 Report Share Posted March 14, 2012 Hi Colin, I know the feeling of extreme pain all to well given recent events in my life. It's not something I would wish on anyone, (except maybe President Assad of Syria and a few other carefully chosen individuals I could name !). I hope your treatment is successful and that you start to feel better soon. These sort of things can be really soul destroying so be rest assured we're all here to support you. Best Wishes Alan Link to post Share on other sites
britfrog 180 Posted March 14, 2012 Report Share Posted March 14, 2012 pain is a strange thing, sometims you can get above it for quite some time and sometines it grinds you down, i raced bikes in my youth and have compressed vertebra, both at the top and bottom of my spine however 80% of the time i can ignore these injuries except when i lift a weight, when i moved house recently , i went so far beyond the pain barrier but i paid for it later and it is only now 3 months later that i can sit in a chair in a nearly normal shape, however what i have pales into insignificance to what these guys suffer, maybe as age grinds on i will suffer more but it is of my own making not something that i either inherited or caught from some weird virus. keep your chin up matey !! Link to post Share on other sites
hurricanemk1c 195 Posted March 14, 2012 Report Share Posted March 14, 2012 Well, all I can say is that I hope the treatment works Colin! Link to post Share on other sites
M31 0 Posted March 17, 2012 Author Report Share Posted March 17, 2012 Thanks all ... I mean really .... means a lot. And I'll talk to joe first if I ever feel down again first!. Link to post Share on other sites
needles 1,013 Posted March 17, 2012 Report Share Posted March 17, 2012 Sent you a PM Colin. All the best mate. Link to post Share on other sites
Aircraft Aviation 2 Posted March 17, 2012 Report Share Posted March 17, 2012 Colin; you've got the world's finest doctors looking after you. No need to worry. At all. I know you'll be absolutely fine! Jack Link to post Share on other sites
SEATAC 400 Posted March 17, 2012 Report Share Posted March 17, 2012 I hope the treatment helps you. Best of luck! Link to post Share on other sites
M31 0 Posted March 18, 2012 Author Report Share Posted March 18, 2012 Thanks again everyone ... choking back tears hear just now. Going on Humira is going to be a big change in my life ... I've not had that first jab yet ... but I think it will be next week at last. Ill get a visit from a nurse at home to witness my first self injection, then its up to me ...I'll have the usual three monthly check up at Aberdeen hospital ... but its all for the better. This thread made me remember I'm not the only ill person here ... thoughts go out to Alan in particular, and also anyone with back related problems ... I'm touched by good will here. This place is awesome and just the true tonic i need as a flight sim fan Thanks. Link to post Share on other sites
needles 1,013 Posted March 18, 2012 Report Share Posted March 18, 2012 Nae bother mate. Link to post Share on other sites
M31 0 Posted March 24, 2012 Author Report Share Posted March 24, 2012 Just a little update, its taking a little longer than expected for things to get going, the Humira was delivered yesterday and it gets kept in the fridge for at least 48 hours, Monday or Tuesday I'll get a visit from the training nurse for the first injection and a few weeks later (hopefully) I'll get some relief from the pain once the drug does its work. Going to start doing hydrotherapy sessions in the local pool again soon, that was the only other thing that really helped with my AS. Cheers. Link to post Share on other sites
mutley 4,497 Posted March 24, 2012 Report Share Posted March 24, 2012 Hi Colin, That's frustrating waiting for the medication, I hope the treatment gets under way and you get relief soon. I bet you're looking forward to the hydrotherapy too. Take care Link to post Share on other sites
M31 0 Posted March 28, 2012 Author Report Share Posted March 28, 2012 Did my first injection yesterday myself with the training nurse to make sure I was fine with the procedure and although it will take about a few weeks to maybe two months to see the full benefit doing this every two weeks, even today I feel so much better and less tired than normal. Link to post Share on other sites
charlie 6 Posted March 28, 2012 Report Share Posted March 28, 2012 Best wishes Colin, glad your feeling better. Link to post Share on other sites
needles 1,013 Posted March 28, 2012 Report Share Posted March 28, 2012 Really glad it's up and running Colin. Also nice to hear you feel a little relief today. Onwards and upwards eh! Regards Brian Link to post Share on other sites
M31 0 Posted March 28, 2012 Author Report Share Posted March 28, 2012 Link to post Share on other sites
dodgy-alan 1,587 Posted March 30, 2012 Report Share Posted March 30, 2012 Glad to hear its working Colin, I hope you get your life back soon mate. I've been told that the nerve damage in my hand is likely to be permanent as the hospital basically screwed up, And thats the words of the neurosurgeon who examined it ! So it looks like i'm on a daily dose of painkillers every four hours on top of the other 22 tablets I take daily to keep myself alive ! (oh and not forgetting my insulin injections twice a day !) Link to post Share on other sites
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