Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Intro

Hi Everyone

AS Patient here from AZ been lurking for awhile trying to glean info about this disease.

I don't have my official diagnosis yet as I don't see the Rheumy til next week. However I went to my GP a few months ago with some low back pain and x-rays showed small changes to my sacrum and some osteophytes. She did the blood test for the H gene and I am positive. I had a hard time believing it at first as I have had mostly mild back pain for about ten years, (I'm 35) but never bad and not really any issues with morning stiffness or pain. The GP even joked that my ROM in my spine was better than hers, (we are pretty friendly). Long story short is I have accepted that I have this and am in the fight to stop any more damage from occuring. The reason I balked when I first heard I had AS is because I spent years kiling my body playing hockey through college then four years mixed martial arts and during all that time heavy weight lifting so when the x-rays showed some damage I just thought I had earned it from all the years of abuse but now I guess I know better. I wish I had known this ten years ago so I could have done something then but I cannot live in the past..I have no day to day issues for the most part so my goals are to keep that up through smart training and diet. I already tried LSD and felt good so I am in the process of testing what starchy foods I can eat. For me it seems that I can eat most starches but in small amounts. If I let them build up too much I seem to get sore in some spots. I guess my nagging question is when I see the Rheumy should I go right to the TNF's or hold off. I only take advil here and there and I want to avoid any stomach damage as I know how serious that can be for folks with AS. However I do want to give myself every opportunity to control this so if the TNF's can help in the fight I would want them in my corner. After going through a lot of the posts here I think this is a great group with lots of experience that I can draw from in managing this correctly. I look forward to also being able to share my insights and discoveries with the group. I firmly believe that I can stop this through smart exercise, diet and possibly some chemical interventions

Thanks for reading

Chris

Welcome Chris,
Come back often. This forum and my friends here mean so much to me. It is a great place to learn and to share what you know.

Looking forward to getting acquainted.

Blessings.
Possi

Hi Chris and welcome to KA. I'm sure you will find it extremely informative and will make a few good friends along the way!

Sarah

Hi Chris and welcome to KA!

While hockey and the martial arts can be hard on our bodies, you've actually doing one of the best things you could have done over the last ten years; keeping fit and using your body. This should stand you in good stead now.

The TNF question is double-edged. The biologic medications do not completely halt the progression of AS, but they do slow it down to barely perceptible in some people. Many of us who take these medications call them a miracle. Others, not so much. From what you say, you have not been too severely affected by your AS to this point, so while part of me wants you to be aggressive in your treatment and go on the biologics, the other part of me says that if you can control it with the LSD, exercise (yoga, pilates, tai chi, martial arts, swimming, dancing, anything to keep you flexible and mobile) and the odd advil then do this for as long as you can.

Do your research on the biologics and other treatments and make a decision based in the knowledge you acquire. Only you can make these decisions and by doing your research you can ask intelligent questions of your rheumatologist.

I'm glad you found us.

Hugs,

Thanks everyone for the nice welcome....I am just torn between using a very poewrful drug, (TNF) and seeing how I can do on my own. Let's face it more than likely I have had AS for about 10 years and I have a bit of damage to show for doing things my way for the past ten years. I just want to give myself every advantage so that I can limit the effects of this disease to my body. I just want to be able to be the same father to my child that I have been so far in terms of being physical. I want to make sure I am the one that teaches him how to catch, ride a bike, etc. I know so far I don't have a lot to complain about compared to others on this board as AS has not impacted what I can or cannot do very greatly. I just want to come up with a solid plan for keeping this at bay and I think I can do that from what I have learned here and from what I can learn from the medical community.

Thanks for your support

Chris

Hi Kettlebell,

I like that name..lol

Just wanted to welcome you, jump right in...

Lisa

Hi Chris,

I lived in Chandler for nearly 5 years at Warner and Alma School crossroads. Loved Chandler and volunteered at the Chandler Center of the Arts... worked in Tempe and had 1/2 commute if I did not leave for work by 7am (otherwise 15 minutes).

I actually began the NSD soon after I moved to Chandler from St. Pete (Florida). Looking at the TNF drugs is a personal decision, so that is something you will need to come to grips yourself.

If you are serious about it, you may want to talk with doctor to have the paperwork ready and understand if your insurance will pay for a biological. Personally for me since I have had issues with side effects from meds, the less drugs I take the better (currently I do not take any as diet is effective).

There is no correct answer for everyone as everyone is different and values things differently.

There was a group of ASer's that met every other month in Phoenix, John Kornfeld was the contact through SAA. Not sure if they still meet. We used to have an active group.

Best to you Chris on making a decision. Te vaya bien!

Tim

Hi Tim

Thanks for the reply...I am on Gilbert and Chandler Heights in Chandler...We moved here from NY about 4 years ago....I appreciate yours and everyones feedback on the TNF's...Historically I am not a pill person as I feel like they do more harm then good to your stomach...I even had an allergic reaction to an allergy medicine...so besides vitamins and advil occasionally I don't take an anything....The way I see this is this is a serious disease and it may take coming at it from a variety of angles to knock it back...I really like the idea of LSD and exercise as being the main controllers of this disease but I have that nagging voice in the back of my head that says I need to try every angle to get this right...I will see what the rheumy says...even tho I don't have a lot of damage the idea that there is damage freaks me out and makes me want to jump in every direction and at every idea of how to control this...I think when I see the Rheumy I will get a better idea of where I am going..I know for a fact tho that I will not accept NSAIDS from him as I have seen others have too many problems with their stomachs.



Chris

Hey Chris,

Welcome. A great group of folks here.

I'm your age and had a similar experience. 10 years of minor symptoms and lots of bodily abuse through weightlifting and mountain sports and, although I don't currently have any fusing, about 6 months ago the disease went in to full attack that left me in bed and on heavy pain killers. That led me to scouring the Web which led me to here - and all the great info.

Personally, the anti-TNF's stopped working after initial success and now I'm approaching all of the alternative routes including LSD (I couldn't manage the NSD but will revisit again sometime), Radon therapy and LDN. The ONLY thing that gets me out of bed right now is a strong NSAID so I'm on the hunt for a better permanent treatment.

Like Tim said, everybody responds differently to different treatments and I'm finding that to be true. You gotta find your own.

Good luck!

Brad

Hey Brad

Thanks for the feedback I appreciate it...I hope you find the treatment that gets you back to your weighlifting and mountain sports....I'm new at this...before I found out about AS , I never really worried much about myself as I always seemed to be ok with pain and was doing all that I enjoyed....now I am going to start paying more attention to myself which may not be a bad thing. I am just weighing my options now to find the best path that works for me...

Thanks and I look forward to talking more with everyone on the board

Chris