Hi....anyone
I am 38 yrs old.... and about to a father for the first time....
I've been diagnosed with AS, approx. 3 years ago....I do believe it has been evident much much longer....
As a young child, and then a teenager,...I was involved in every sport I could get my hands on.... and not to be a braggart, excelled at hockey, basketball , and was in supreme shape....physically.... however....I recall when our gym teacher would do tests annually, (good thing theres a "u" in that word...lol)involving fat percentage . and flexibility. I was always close to the bottom of the class in flexibility... although no stiffness or pain was present at the time....
Fast forward to when i was 29/30 yrs old..... I was still playing hockey weekly, tennis and golf....and was still very active.....but I had a "sciatica" problem, causing pain down my buttocks and hips.... eventually this pain lessened, and new ones arose... such as a painful neck and back pain near the T6 vertabrae (middle of back)... I shrugged this off as "getting old" ...or too many sports when i was young.... but the pain and stiffness persisted and got worse.... I finally made a doctors appointment, (thank-you, Mrs Andy) . my posture had gotten worse...also... this scared me, but being a "tuff" guy , I tried to shrug that off too...
I sit here with tears in my eyes..... not even half the person I use to be...and am scared that i won't be active , when my son/daughter is born soon this year....
I finally got in to see a RA doctor this past month, and am awaiting a call for my first Remicade infusion....
I'm quite frightened and leery of taking this medication.... after reading what I could find on web...Reluctancy has set in....but what options do I have? I need and want my life back.
If there's anyone out there that has any words of wisdom , id gladly cherish your words and time....
I am preparing to write a journal on my remicade trial.... I think some people would like to read about a real life trial , rather than read about it under a marketing scheme....
Andy
Hi Andy, I do not take remicade but I know someone who does and it has worked wonderfully. I take mtx, enbrel, and pain meds. I go to htthe ra board. There is more support there. I am still trying to figure ou best med for me. Like you I have have had pain for years and was finally diag. last winter.
The journal is a congrats on your baby. I have 3 girls(16, 12, and 6). It is hard at times but they love you no matter what. They are what keeps me going and love always helps. You are in my prayers. Try the Rhuem. board also. Cherie
Hi Andy,
I am going in tomorrow for my first treatment of Remicade. I am nervous too. I am a young 51, and was just diagnosed a couple of months ago. My x-rays showed deterioration of the sacrailac joint on my right side. Like you, I have been back and forth to the doctor for years complaining of stiffness and pain.
Let me know how your treatment went. I will post again after I have mine. I am dreading the thought of catching every cold and bug that I come into conact with. My doctor said that happens alot with older patients who may have less imunity anyway.
Molly B
Thx u2
Hi Andy,
I just came across this this morning, Hope things have turned out well for you and your remicade is working fantastic. I have AS as well I'm 26 years old, I was diagnosed with it since 21 but think I've had it as well since childhood . I had a hip replacement at 19 years old and have been on remicade for 1 year so far it's wonderful, no side affects and I feel like a normal women again. Just wanted to let you know that so far for me anyway it's been nothing but a postive, I'm able to exercise 6 times a week again lead a normal life again
Take care
Wow your post brought back all of the scary feelings I felt when I was going through the process of being diagnosed. I spent 13 months off work, and the insurance company denied my claim ( as if I wasn't under enough stress- I eventually won, but it took me a year, 7 months of which I had no income). Hang in there. I am on sulfasalazine, and it works fairly well but has lots of side effects. If I go over 4 pills a day, I can't sleep, and it messes with my head- causes depression. It is also destroying my blood cells, but I have opted to stay on it for now, as the other medications have more side effects.
WIlma.
I am 16 years old and had my first remicade procedure about a year ago. I can tell anybody thinking of taking it, for me i am in love with this drug, I am now abe to be socialable with people and actually able to make firends, because i can actually do things with people. I was nervious at first and still kinda am, you cant really help it. I was 7 years old when i first started reciving soreness which oventually turned into AS. I was diag with A.S about a year and a half ago. Can you say wasting like a good 7 years of my life finding out what it was, and finding a medication that work. If you are nervious about spending what is for me 3 grand every 6 weeks dont worry that much, If anybody is like me and tried every med that was giving to me with no luck, then supposibly there is a merrical that will help but costs thousands of dollars and may not do anything different then say Oxycodone or a T3. Sorry about me ramballing on again, I am just so happy i have a place to talk to people now.
Are you still out there? I hope you are so much better that you don't have time to sit in front of the computer anymore and you are back at your favorite sports again. That baby must be big by now too. Congrats!
If you are still around, please see my post about a chat group so that we can all support each other on a more regular basis, like the RA group.
I pray that you all find the perfect meds or better yet, that God will heal us all. Nobody deserves this much pain. Do we? Pray hard!
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