Thursday, 13 October 2011

Seen Rheumy specialist biologic's nurse

Saw my Rheumy specialist Biologic's nurse today and I'm of all biologic's for good now. She doesn't feel Im gaining anything from them now they are not helping with the pain and I have got a lot worse in the last few months. We did talk about Simponi but because my breathing is being more restricted by my fused ribs it is a big risk that I could get Pneumonia again this winter.So we will see how things go without the Biologic's  and just take pain relief and I have Morphine if I need it. I don't think the Enbrel was doing anything for me anyway except causing Iritis every few weeks so Im hoping I wont feel any worse than I do now.

I was expecting to see new Rheumy today and was very sad to hear that one of my Rheumy nurses had died suddenly and so every thing had changed and my old Rheumy is staying on at the moment. I am pleased he is not going but very sad about Norma she was a good nurse and new her job my thoughts are with her family.

Wednesday, 12 October 2011

Rheumy Tomorrow

Eye specialist 9am in the morning the 13th Oct Iritis both eyes again started my Maxidex drops yesterday every 3 hours left eye has cleared but right eye is still very blurred from pressure. Convinced this is being caused by Enbrel before I started Enbrel I hadn't had Iritis for over 6 years now I'm getting it every few weeks.

Rheumy at 11:30 to see if I'm still getting worse as fast as I was two months ago. Hoping I might get to meet one of the three new Rheumys I now have. Also might get to see there very own specially trained Physios to help me with my breathing. I will update as soon as I have any more information. 

Thursday, 6 October 2011

Five months on.

Well its about 5 months since my last post and what have I learned.
1) Its been 7 months since I gave up smoking and although I still miss it I do feel better.
2) ASRA is growing slowly 49 members now still a lot to do but have a great Admin team.
3) Have faith in myself and be happy with who I am.

My Ankylosing Spondylitis has got worse over the last few months my Kyphosis is causing my head to lock closer to my chest wet shaving is near impossible now and its hit and miss whether I cut my throat or not. I did take the advice of my good friend James and brought an electric razor. My large joint at the top of my spine is well on the way to becoming fused now and I have very little movement. My walking has become slow and I have to use my stick all the time when out and even indoors some days. The Planter Fasciitis has been permanent in both feet for three  months now and my Ankles swell and become very painful.
My Rheumy nurse suspected Rheumatoid Arthritis a while back and it looks like she was right as my knuckles are very painful. The spurs in my shoulder are still giving me pain at night but my left hip is not as bad as it was. My breathing is not so good now my ribs are really restricting me having to use inhalers a lot more. The first photos are 9 months ago.

With all the things that have happened over the last few months ie The sudden loss of my brother and other illnesses in the family my own Cancer scare I have learned that what is important is not that I look like Quasimodo or cant move around as much that's only the shell I live in the true me and the happy me is inside. I'm proud to be different stuff the people who stare and laugh I just stare back they are all boring and the same I'm special we who have AS are all special we are strong and caring people.I see my Rheumy nurse for my check up next week will find out my measurements then.
The photos below are now please ignore dates on photos I forget to change date. I think the deterioration is clear. I'm showing these because I hope it will help others and show what can happen If you are lucky and get an early diagnoses please please exercise and be aware of your posture don't end up like me and all the others who's diagnosis was too late to stop the damage.

Monday, 30 May 2011


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 

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.