ASRA UNITED

I am the founder of a new AS & RA forum I feel that a lot of the forums on the web are not what a lot of people want. I know I wanted help and support and friendship from others who understand what a person with AS or RA goes through.
A lot of sites seem to have people who don't have AS or RA and think they know how to treat it or people who want to dictate to you what you should or shouldn't do. We are all different in the treatments we choose and I feel we need a site were we can talk and get support without feeling people are dictating or talking to us like we are idiots. I have Admins and Moderators who have AS and RA and like me have suffered a long time so we are sympathetic  with members and understand what they are going through.

My site is www.asraunited.org 

Living with AS

Hi I'm Kevin I was diagnosed with AS 27years ago after suffering for 23 years. Life has been hard in many ways the first 23 years thinking I was mad and being told I was imagining it and a hypochondriac. Being a child and in constant pain is not easy when you cant join in and do all the things your friends are doing. In the 60s and 70s not much was known about AS many Doctors had not even heard of Ankylosing Spondylitis yes even less than now. By the time I was 30 I was starting to get Kyphosis and a lot of neck and cervical spine pain this was when I was diagnosed finally. At this time treatment was Anti inflammatory, pain killers and stretching exercises. I was taking nsaids for over 15 years until my stomach reacted and I was admitted to Hospital because I was bleeding.

After that I was kept on just pain killers for the next 8 years as no Doctors would prescribe any other Nsaids.

I was started on Humira in 2010 which worked very well on my inflammation and pain for 9 months then I got swine flu which turned to pneumonia and made me very ill and decided I would rather live than risk Humira again. After 6 months or so because I was in so much pain I was talked into trying Enbrel as it has less risk of causing infection I have found this helps with the Inflammation pain but does nothing for the Damage pain I now suffer.

I worked Until I was in my early 40s in engineering heavy work and long hours at this time I was also bringing up my Daughter on my own so always on the go with very little rest. I retired from work when my Doctor suggested that he didn't think I could go on much longer.

I now have very severe Kyphosis and my spine is fully fused apart from the very last joint at the top of my spine which is in the process of fusing now. I also have type 2 insulin dependent Diabetes, IBS and COPD.