Ankylosing Spondylitis

John2002

Hi guys,

Just wondering if any of you out there are suffering from this? I've been told today that there's a strong possibility that I may have it and I'm just wondering how you do/don't cope with it. Does it impact on your day to day life? I'd never heard of it before today so it was a bit of a shock!

According to this http://www.nass.co.uk/ 1 in 200 men have it and
1 in 500 women have it in the UK anyway so there must be some boards members with the condition.

Cheers,

John

bug

Slow or gradual onset of back pain and stiffness over weeks or months, rather than hours or days.
Early-morning stiffness and pain, wearing off or reducing during the day with exercise.
Persistence for more than three months (as opposed to coming on in short attacks).
Feeling better after exercise and feeling worse after rest.
Weight loss, especially in the early stages.
Fatigue.
Feeling feverish and experiencing night sweats. -

The above are some symptoms of AS as it is known, I have never heard of this before. Did your GP diagnose you or did you have to go to a specialist? Is this a newly discovered disease?

I am very worried. I suffer from some of the symptoms above and rhematism runs in my family. I was taken to the doctor when I was about six because I got severe pains in my knees, which could only be described as -someone taking out your bones and injecting liquid nitrogen in that space. -well something really cold anyways. The doctor told me it was growing pains. However this has been happening for years in my hips,lwr back, ankles, shoulders, wrists.

I sympathise with you, joint pain is the worst.

John2002

The above are some symptoms of AS as it is known, I have never heard of this before. Did your GP diagnose you or did you have to go to a specialist? Is this a newly discovered disease?

I've done the rounds from GP, physiotherapists, orthopaedic surgeons, rheumatologists and also dermatologists! It's not a newly discovered disease, my mother had a 30 year old medical book at home and it was described in it-although the treatment was different back then.

From my reading on that website I gather that it is controllable to an extent by staying active and keeping mobile otherwise the joints seem to seize.

I woke up about a year ago with the most disgusting pain in my hip that I've ever had. I couldn't walk or even move without being in what is described as "acute pain". Anti-inflammatorys helped clear that but then my shoulder started at me and it's been f*cked for the last year almost. I also got a bit of a rash on my forehead/top of scalp which may be psoriasis-another symtom of the disease. You should get some blood tests done, they can tell a lot about whether you have rheumatic problems or not. I tested positive for having HLA-B27 which is present in 96% of people with Ankylosing Spondylitis, so it's looking dodgy to say the least but I won't know for sure until I go to my rheumatologist next week.

Best of luck with finding out what's wrong with you.

bug

I was supposed to get blood tests but chickened out. Anyways I will go again all the best and thanks.

John2002

You should do. I've been tested for 10-15 different things I'd say and they all showed up normal bar the one for HLA-B27.

Jes'Shout!

A.S. is a tough one, that's for sure. Now is the time to educate yourself on everything that you can find on the disease. Don't forget to include alternative health care methods in your search. Because A.S. affects muscles and joints so much, you may consider learning some basic yoga positions and stretching to keep your muscles balanced bilaterally. Anything that affects the ability of the skeletal system to maintain normal posture can cause extreme muscular imbalances. Preventing early onset scoliosis is really important. Here are some web addresses that I use frequently to research diseases:

www.ncbi.nlm.nih.gov/PubMed/
www.nlm.nih.gov/
www.medscape.com

If for some reason these links don't work for you, do a search on:
1. Medscape
2. Pub Med
3. Medline
4. US national institute of health
5. US National Library of Medicine

My thoughts are with you John.

John2002

Cheers Jes'Shout!, I'll have a look at those sites.

trazix

The Symptoms you have sound similar to what i have suffered with for the last year Arthritis in my toe's ,fingers, knee ,lower back and shoulder also i have severe Psoraisis on my scalp , back and my face. The condition my GP diagnosed was PSORIATIC ARTHRITIS.

Jes'Shout!

RE: "The condition my GP diagnosed was PSORIATIC ARTHRITIS"

From a subjective/symptomatic perspective, there are many similarities between the two diseases. It is interesting to note that in AS, there is a higher than expected frequency of the HLA-B27 tissue antigen. This same antigen is present in some PA patients, especially when the spine is involved. This could possibly support the idea that both diseases have familial/genetic link. Drug therapy for PA is often very similar to that used for those diagnosed with rheumatoid arthritis; although there are some drugs that are used in the treatment of RA that have not been proven effective in the treatment of PA.

Best of luck to you.

black & white

I've had Psoriasis, along with Ankylosing Spondilitis and Psoriatic Arthritis ( excuse spelling, drinking Erdinger at moment) since 1987. Tried loads of creams etc and nothing made much of a difference. I always knew a few things that made the skin worse, hot spicy food ( Vindaloos) and too much booze over the weekend. I explored that further and came across a book by a guy called Jan de Vries. Can't remember exact name but has Arthritis and Psoriasis in the title, bought it in Easons Limerick for about a tenner.

It was all about the effect of diet and lifestyle on the Psoriasis. I followed it for a year and it made a big difference. I also drank a couple of bottles of Willow Water a week. All in all the P reduced greatly, enough to start wearing shorts and T shirts in the better weather.

My Spondilitis was getting worse so I went to a new Rheumy who introduced me to Enbrel. It's a new drug developed for Rheumatoid Arthritis but also given to people who have A.S. for a number of years. It greatly eases the Psoriatic Arthritis and the A.S. and has the brilliant side effect of virtually clearing up all signs of Psoriasis.

I went on Enbrel on 25th January 2005 and since that I wear short sleeves all the time except for work. I could wear short sleeves to work if I wanted but don't like short sleeves with a tie. I even wear short sleeves in the depth of winter. People think I'm mad but it's still a novelty to wear short sleeves without being self concious about it.

My Rheumy told me that Enbrel was being considered for people who had bad P. Not sure if this has happened yet but if it is, get in quick. The cost of Enbrel is in the region of Euro1,200 a month though the Drug refund scheme you only pay Euro 85. With the way the government is cutting back on Health they won't authorise everyone. Your best chance is if your older, have tried several meds that have either not worked or used to work but no longer.

Best of luck and if anyone want more info, feel free to PM me. Only check messages once or twice a week but I promise I will get back to everyone.

If anyone is in the Mid West area, there's a info evening on P in the Southcourt Hotel, Limerick next Thursday at 7.30. Won't be there myself cuz I've tickets for Hazel O'Connor but might be well worth attending. It's sponsored by one of the drug companies and so there might be some new products available.

shinners007

my fiancee was diagnosed with AS 4weks ago yesterday he bagan Hemuria treatment and injection every fornight which is life long. it took them two years to diagnose it.

before the treatment began he had to do a TB and bloodtests. the disease is also heriderty and affects his posture his quite bent over already. his now getting physio, swimming and doing daily excercises.

he cmplains with serious pains daily, their is no cure for AS at present only control mecanisms and its very difficult to diagnose AS. we now think his bro and aunt have AS.

he found it hard to accept but is ok with it now as the rheumotoligst says the humeria is excellant in reducing the pain and stiffness and has a postive result within ireland.

women can get AS alsosomtimes its associated with a certain bloodtype.

Blisterman

Mick Mars from Motley Crue has it. You can read about his experience with it, in their book, The Dirt.

Kooli

My mum has had AS for decades now, and it took her soooooo long to be diagnosed, so if you do have it then you're very lucky to have it spotted. I have recently been tested for that antigen as I was developing some symptoms (and there is a genetic component) but luckily I was in the clear.

There is no cure for it but it is soooo important you do whatever exercises you are told to do - as far as I'm aware, the spine will start to fuse into a fixed position, but you can exert some control over what that position is (i.e. it's usually very hunched over but with exercise you can ensure it is straighter).
I'm not a doctor though, so I'm not really sure.

I do know that my mother experiences long periods of remission where she is in no pain between bouts of pain. There are some things she can't do, but not many, and really it doesn't get in the way of her life.

Good luck!

Esel

[edit] Who resurrects old posts? Silly me not to check the dates before getting on my horse! [/edit]

black & white

The easiest exercise and one of the best is to lie on your back on a bed but with your legs hanging over the edge ( from the knee) After a few minutes you will be able to rest your head on the bed, at first it's raised up off it. Do this for 20 mins 3 times a week

Beruthiel

no pulling up old posts!
B