Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Still no joy!

I tell you what, you chaps in the US have it sooooo much easier than here in the UK. Some of you may remember me from a few years back when I joined, I was so positive about being diagnosed. Not bad after suffering for 8 years previously before being diagnosed. But now I knew what I had so hopefully that could now give me and the doctors some direction on how to treat this condition.

My own GP was inspired by my positive approach and promised to do all she could for me. She got me registered with the local hospital and consultants and we went through a series of different meds over the next few years and had me involved with Hydrotheraphy and Physiotherapy working together with my own trainers and my own sports trainers and therapists in trying to not only get me back into 100% mobility but 100% fitness.

But thats where the dream ended....

My GP retired, our local NHS is seriously in debt and after numerous broken promises and putting me through hell on medications that made me worse I was told that my local hospital and the administration that controlled the budget could not afford to allow me onto the Anti TNF. As if that wasn't enough, they closed the pool and basically forgot all of us patients because the consultant changed job and the replacement was a few MOD (Ministry of Defense) Stand in consultants who really didn't care as long as they hit their numbers of seeing people.

I was then advised that another area had the budget for treatment. I therefore moved an hour and a half drive away into another county, (In the UK thats drastic!) Only tohave to wait 6 months before I could get an appointment to see a consultant, only to have this cancelled because he decided to have a day off!

I am no longer a professional sailor racing, in fact I am no longer able to move on or off of a seat without assistance. I struggle to wipe my butt on my own and oh I forgot to add that I now sleep, (due to sedation) between 18hrs to 72hrs straight. Potentially I am addicted to Fentynal and the patches, (75mcg) only last 2 days unless i've slept right through and then I wake to find I cant move and I'm in sooo much pain. I'm no longer allowed to dish up my own meds because my memory is shot and there is a high risk of overdose.

This condition has cost me, (in hard currency/assets), my home, my car, my savings and my wife (Hence the loss of the hard currency/assets) plus the few relationships I have managed to get going since my divorce have also gone to the wall.

So again, someone remind me how I'm contributing to the world and leading a quality life?

I'm not even able to finish it because assisted suicide is illegal here. Not that anyone would help me!

Not much of an animal anymore....

I was so sorry to hear that the NHS has let you down so badly. You sound like a certain candidate for anti TNF. It is awful to lose out due to the "postcode lottery". I am very fortunate to be in an area with a wonderful rheumatologist who has fought to get funding for anti TNF treatments. I started remicade in July and am grateful for that everyday. It has been quite miraculous! As far as I know remicade is not available for AS in England but is in Scotland. Being accepted for anti Tnf does take time but I can understand that since it is a powerful biologic and expensive. I was referred back to the hospital by my GP last November and saw the consultant before Christmas who then set up the process of being assessed by the rheumatology nurse and physio. Eventually had my 1st infusion 19th of July and am a new person with my life back. I wish it could be like this for everyone!
Please don't give up hope. I hope and pray that you find a good rheumatology dept like we have here who will help you through these dark times. Mary.

I am sorry to read the the NHS has failed you.

I am also sorry to read that AS has got the best of you at present.

Not too sound unsympathetic but the best resource any of us have against AS is our own determination and fight. Right now from reading your posts it sounds like you've surrendered most of that.

I have given up on pills (med's) on more than one occasion. Perhaps I did it because I knew the ones I was getting were doing more damage than good.

If you've got med's that are "supposed to" be easing the pain but you sleep all the time and wake up to pain that makes you unable to move I think its time you tossed out whatever meds you have. Not moving is not a choice if you have AS. No matter how bad those first steps are every morning breaking through them and moving around a bit even if it is with a tear in your eye because the pain is so unbearable is better than not moving about.

You are a yachtsman, a scuba diver and someone who enjoyed battling the elements in those endeavors. This (AS) is certainly not an endeavor anyone would wish for but attacking it the same way no matter how little the rest of the medical world helps is probably the best thing you can do.

I don't know much about what the esoteric question of who contributes what to life means, I do know that like it or not I have learned more about myself by getting through some of the lowest AS bottoms my life ever dragged me through. I do not compare my pains to the one's you are enduring now. I am not comparing my determination to yours since I'm not that gifted when it comes to determination. I just hate like heck to see someone, who enjoyed life as much as I did before AS succuumb to this beast.

Don't give up! Keep trying, get more help, please don't give up. And you wrote about "finishing it" --do you feel like hurting yourself?? Please, if you ever do feel suicidal, get emergency help immediately. You are too precious to lose.
Jan

Lee, I do remember you very fondly. You inspired me when I thought I could do nothing and it kills me to know how badly you've been used in your treatment.

Please persevere. The fight that kept you sailing against all odds will serve you in good stead now. And when you don't feel you can fight, come here and tell us. There are all kinds of platitudes I could spout right now, but it all boils down to fighting for your life.

Is there anyone there who can advocate for you to get you the treatment you actually need? Is there a KAer there who can do this for you? Dear god, I wish I was there so I could be your advocate.

Know that there are people all around the world who care about you and remember that when things are bleak at home.

Fond hugs,

i am so sorry. i've only been here for a year, so i did not know you earlier, but my heart goes out to you now. i can not compare my pain or my low points to yours, but i can say that i've been through some very rough times and the main thing that kept me going at those times was knowing that i had always come out the other end before, so somehow, things would turn around. i've had so many ups and downs, my life has been so cyclic. if you can just hang in there, no one can predict what in our lives is just around the corner. when things are going poorly, i try to think back to when they were better and see if i can do even one thing to help get back to that point. when you had a doctor that was working for you, it sounds like you were doing a lot better. maybe this most recent medical person will be able to help you physically. as for the other parts of your life, is there anyone you can turn to? a family member? a friend? at least you are turning to us, please do that if it helps.; just hang in there, please. i wish i could say or do something more helpful.

sue

Have you tried contacting the anti-TNF manufacturers? They are pretty good to help out those who need it. It's at least worth a try.

My road to a diagnosis has been a rough one and I'm in the US. Even down to the ex-spouse due to my condition and my current relationship isn't the best either. I think there are a lot of others that can attest they haven't had it easy either.

Hang in there. I hope someone who is familiar with your health system will see this and help you out.

Sharon

all to no avail!

No doubt you can imagine how I feel inside. One person wrote about weight loss, I've gone from almost 16stone to 9st 6 thats 6 and a half stone, because I'm not working I cant even afford to by new clothes so I wear my old jeans etc in the smallest size I have before I couldn't afford to replace them. So a size 30 waist is plainly obvious that its too small as the belt pulls in the slack. I look skeletal!

There was a promising rugby player here recently who flew to Zurich for an assisted suicide, it hit the papers massively because of the friends who helped him.

I unfortuantely haven't got that many friends here in the UK who would help because being a sailor my friends are global.

As for the Anti TNF I have jumped through their hoops numerous times only to get to the end and they move the goal posts. The first was due to the clinical trial in london that went wrong and left 4 people in a comma. This scared the pharma companies. Second attempt was that they decided after all of my application that because I have asthma too, ad my Dad had TB, I cant have remicade. So after numerous attempts and the fact that my Local goverment and hospital went broke almost I had to move and so far its taken a year to even get the GP to make an appointment to see the consultant and where he requested it it has taken 6 months so far to actually get the appointment. That is next month on the 16th. So that will be a first appointment probably narrowed down to there guidelines of 15 minutes so it will take at least another 6 months before I even get another appointment and another 2-3 years before I even get another look in on going for the Anti TNF. I am 35 now, by the time they get me on Anti TNF and it works I am going to be 40, by the time they get me mobile again its going to be 45. Whats the point? I know nothing else besides sailing? Now I'm just going to be stuck on benefits which I hate, never get to travel again. I'll also have to stay living here to get the Anti TNF no where near my family. I'm lonely as hell here. I dont know anyone! Besides the care ppeople who come in in the morning and in the afternoon and evening.

This sucks! I have no quality of life!

Lee

I spoke over a year ago to a 1000 old the worlds key opinion leaders from an AS suffer and a sportsmans perspective at a rheumatology conference sponsored by one of them.

I can't say who as there was a confidentiality clause, but afterwards i spoke to them and they listerned, smiled sweetly and said call me in the office we will see what we can do.

I called and called and called. Nothing!

We are just money to them.

Lee

Honestly, I don't know what to say, but I want to say something. I want you to know that there are people listening to you, and we really hear you.

How frustrating your situation is. It's not as if having AS, and getting diagnosed for that matter, isn't difficult enough.

How are you contributing to the world? That is for you to decide. I can say that being open and honest about your experiences here is a great contribution. I found hope when I found KA. It sounds cheesy, but I really did not know where to turn. I'm 22, none of my friends truly understand pain like I do. It's taken a huge toll on my self esteem.

I am about to graduate and have my teaching certificate to teach junior high. I should be so excited right now, but I am so scared. How can I possibly work the 60 hours a week it takes to be a good teacher? I love my career, and I feel that I am great at it. But, I have terrible fatigue, and the drugs have me up and down all the time.

Please don't give up. I understand how difficult it is. I am starting to have to let go of things that I love so much. Everyone with AS walks a different path.

Keep us all updated on how you are doing, okay? I mean that too.

Aly