Ankylosing Spondolitis.

matelot123

I know what you mean lol but in all honesty i took the news in my stride I thought well that explains why I have to roll out of bed in the morning and walk around like mick miller for a while before i get going lol ah well it got me out of marching eventually ,so there's a bonus
I think the advice re exercise and correct posture etc really helps initially but in my case the exercises fell by the wayside one after the other as it became too difficult to do them.I joined a special AS clinic at Inverclyde Hospital but after two visits they said I was too stiff and not going to get much benefit from it lol...well at least they were honest
Taking Humira seems to be my last gasp at something decent to try and combat this otherwise I'm going to have to get a sholley and lean my way around at least i'll be able to slouch with a good excuse....:D

stef240377

Thanks for starting up this thread. My partner has had AS since he was 11 and is now turning 30. He has been made redundant after 18months on sick leave. During this time he has gone from eating co-codamol like smarties to a concoction of tablets (30 in total) a day and has been on humira/adalimumab since june 08. He has had regular check ups and blood tests all of which show it is not working and yet consultant will not move him on to anything else. Blood tests monthly show esr and crp rising up to there original levels of which he had before sulfersalazine in Nov 07.

What has amazed me reading briefly through the thread is no one has mentioned chostochondroitis. This is what my partner was told he has. It is an ailment which feeds of underlying prognosises - so the dr informs us. This he explained is the reason for the chest pains, difficulty breathing, almost impossible to cough or sneeze without being dropped to your knees in agonising pain etc.

He has been hospitalised for a week for intensive physio and hydro where in actual fact he went in on monday had one session of physio, tues had physio and hydro with an afternoon on a steroid drip and left to rot the rest of the week in bed. He summed it all up to the dr on friday saying the highlight of his week was receiving mint custard on his sponge cake something he had not had since a kid lol.

Over the past few months he has started to get progressively worse - living with him i can tell the amount of pain he is in from his posture. The more stooped over the more intense the pain and yet he wont take the smile of his face because he wont admit to me how much pain he is in. I have had to endure him kicking and punching the matress in the night because he has become so stiff he can not turn over and almost in tears that at his age something the majority of us take for granted is so difficult. We have had to listen to family call him an idle lay about because of is inability to work which depresses him further because he desperately wants to return to work but was told his previous job is too physically demanding he will never go back to it.

It is nice to read however that the 'new' super drugs are not as effective as the consultants and the likes would have us believe. When he was prescribed sulphersalazine the nurse told him how he would be singing and dancing from the tree tops in just 3 weeks - obviously the time past and nothing had changed, then different cocktails of drugs thrown into the balance all with the same response. The humira came along and we didnt hold any hope and it has proven as in effective as the rest so we now await enbril.

stef240377

Just out of curiosity how many AS sufferers here have claimed for DLA and have you been successful?[/quote]


After being off work for 6 months trying to find out what OH would be entitled to in worst case scenario we were banging our heads against a wall. Most said nothing because he was on a good wage which on sick pay paid full rate minus bonuses. Once his sick pay expired all the channels were open to us saying oh you should have been claiming X,Y and Z is there a reason why you haven't been?

First applied for DLA and IB in April 2008. After alot of tooing and frowing between different departments (a wait of 11 weeks) DLA was awarded at higher mobility and lower care. IB followed but we found out there was no element on it for me so had IS top up until Dec 2008 when someone worked out i should have been on IB as a dependent all along. Today we have been to an IB meeting at job centre and told as his condition is worsening then we are to put in for a review for the care component as he would now qualify for it and has the medical evidence to support it. HTH

saffiedale_2

been having carp couple of days.:eek: the pain down my neck and in the back of my eye is unreal.:mad: i hate myself for feeling this way. my poor husband.:rolleyes: my right arm as got so bad that i can hardly lift it. bring on the enbril.:j just hope its what im looking for?:rolleyes:

stef240377

Well things are on the up for my partner his biologics nurse Sam at cannock chase hospital has bullied the consultant into letting OH change his funding from Humira to enbril. we have two rounds of humira in the fridge to keep him going and allow a stress free transition from one to the other. Unfortunately it is a different injection procedure on enbril and i dread the thought of him having to inject himself properly once this is delivered but anything is worth a go to give him some form of normality. Hope all you other suffers are hanging in there if you are not already on Anti TNF the wait will be worth its weight in gold once it arrives.

saffiedale_2

hi steph, i phoned sam yest. lol. she recons the funding as been put in place, dr price did sighn it. but iv got to seeehim 18th march. then she says he will give the nod and the enbril should be there? how long did she say till he will hear?

stef240377

AS terry is already on Humira his case is easier as it is an easier transition. All sam has to do is contact pharmacy to change the next prescription.

When we were told funding had been granted last year we were messed around considerably before getting the Humira. It was a case of if i have funding give me the god damn stuff or i go through pct to find out why im being lied to. Saw Dr Chalam in may and the meds turned up in June. Started of on fortnightly injections and went to every 10 days before xmas as they reckoned terry needed a kick start to get them working. Since then he has deteriorated so it was obvious enbrel was next step.

He refuses to get his hopes up that this will work especially after Humira failing, even the central news topic on the drugs has not lifted his spirts as it only showed 2 people out of the 500 currently trialing these anti tnfs to have any improvement.

sootiespeckle1978

Hi everybody.
I was diagnosed with AS when I was 19, I'm female (which is apparently unusual for AS) and I am now 30. I inherited it from my Dad who all suffers with it! I seem to have had some really strange symptoms. I have had a bad back, shoulder and awful neck and also fluid on the knee as well as a clicking jaw and absolute pain when I sneeze. I trien numerous drugs and I am now finally on methotrexate and sulphasalazine which have calmed it down a bit but it's still awful and reguarly suffer with severe pain. I reguarly take solpadols which cut out a bit of pain..:T
I get people all the time saying that it's just a bad back when i occasionally have a day off from work....I just wish people knew what it was really like.
good to have started this though as we can all suffer together!!!

saffiedale_2

my god the first woman:o i dont wish it on you but its great hearing from another woman.:j its strange but my nan , god rest her had awful neck probs?? had operation and ended up with neck and head too one side. and stuck in severe pain in a wheelchair till she died. and my cousin as sim thing.:eek: my neck drives me to despare.:mad: :mad: :mad: the pain is unreal, into my haed and the back of my one eye?:rolleyes: and my back pain is severe too. its not just discs its sacriolac joints. :eek: my hips were driving me insane:D but then i think the pain does that. and when the fibro starts as well i just carnt get any respite.

sootiespeckle1978

I know its good to hear that other women suffer, well not good but u know what I mean. The doctor who I see is really quite nasty and says that women don;t get it as bad as men which really annoys me as how the hell does he know.:mad: It's a horrible disease and I swear it has aged me so much...there is so much I want to still do but now can't. I used to swim competitely but now can't even swim!!! I think there should be more publicity about it to make people aware of it. Good 2 hear from u...and glad that i'm not the only girl!!!!:beer: