Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group new to kickas

Hi Steve

I can't help with any med questions as currently I am not taking any. I just wanted to say welcome to Kickas. You will get answers to all your questions here.

Hi Stephen,
Welcome to Kickas. You will find lots of info here and always help when you need it. I can't help you with the Remecade delema as I am in the US. I've had AS for over 30 years, been through all the NSAIDS, can't do the inhibitors, I only take pain meds now and Prednisone when I get severe flares.
I hope you find the answers you're looking for. Stay with us.
Cindy

Hi Steve,

I just wanted to welcome you to Kick AS.

Take Care,

Lisa

Steve welcome to the site. In reading this thread I see you have been given some good replies. 22 years is a long time to have lived with AS. Since 1976 I have tried a ton of meds but Indocin worked best for the pain and range of motion but after 20 years it got to messing with my mind and it was like a mental fog that I lived in everyday. In 1996 I had started taking fish oil as well and after a few months I could tell it was helping so I keep taking it along with the Indocin. In 2004 I started taking more fish oil and tapered off the Indocin. My balance, ring of ears and mental fog left after being there for years. I had taken some bad falls due to the lack of balance and that is not a good think when the AS has fused you from top to bottom.

I take four capsules of fish oil (right now it is flax seed oil since the store was out of fish oil the other day) twice a day as well as garlic oil capsules. I did not like the tablet form of garlic. Well I take several other things like Coenzyme Q-10, etc but it is the Omega 3’s that I can not do without and keep moving. I go to a great Chiropractor 3x a week and 2x a week for massage therapy because my upper back and shoulders is where I still have a lot of pain and muscle spasms.

As you know with AS you have to depend on yourself to research how to manage your case since we are only one of many patients that our doctors have to treat and they do not live inside of our bodies.

About 18 months ago I quite eating and drinking anything with wheat or milk in it and the life time of IBS left me. In time I learned it was only the wheat products that were the offender. I was told the IBS was due to the NSAID meds or the AS itself but when stopped all prescription meds in 2004 and the IBS continued I started for the first time to suspect my diet.

Best of luck with you back and shoulder pain but do not expect relief to come from a prescription has been my experience with AS for the past 30 years.

no, i`m not into rammstein, but i`m going to see them when they tour the uk, cos my girlfriend is dragging me to see them cos she thinks they are ace, i`m more into the heavy scene like iron maiden, slayer, deicide, helloween, cannibal corpse, sepultura, cradle of filth thing, i don`t mind mortiis tho.
stephen.

hi,
how many kickas members are there here in the uk ?
cheers
stephen

Hi. My husband, Doug and I are new to this website. I'm so grateful we found it. Doug was diagnosed with AS 15 yrs ago. He has shrunk about 6 in. in height. and stays in chronic pain. The dr. has to be careful what to give him, because so many meds tear his stomach up. I've been doing some research on Embrel, it sounds good. In addition to his AS, he also has alot of red splotches on his face. Embrel gets rid of this as well, which is called Psoriatic Arthritis. Anyways, I hope to find some new friends here and lots of useful information!

G