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 just had my first infusion of Remicade yesterday. It went fine, no
problem. If you've ever had an IV, it the same thing. Took about two
hours. My doc's office has big lounge chairs and a tv set up so we can
watch movies.
"The names Andy.....but you can call me Andy." With this sense of humor you're going to make a great dad!!!
PS
Thank-you "Lynk"
I hope to here from you often mate....id really like to know how the drug is doing and how your feeling.... I hope this releives some pain for ya .... I really do....
Ive recently left my employer....due to not being able to do my job with the persistance of pain and stiffness.....
I get the feeling from some people in my life that they think its all in my head...and if i would just stretch and exercise ...everything would be ok..
They need to realize as do others.....I was, up until a few yrs ago...playing sports, or a sport ,almost everynight...and a couple times on weekends... I hate the sense that they think im making it up
Im glad i found this site....its made me feel at least beter mentally about the disease..
Thanx to anyone that has shared theyre experiences here....you have no idea what good you are doing for people , that are looking for an outlet...
Thanx to you all....
Hi Andy...welcome!
Where in Canada are you?
Hey Andy!! Welcome.
I think we all know how you feel. Some of these medications are really scary when you read about them....but they have so changed our lives. I was just like you when my doctor suggested I start Humira. I actually put if off for about 4 months until one day I just said to myself "I've got to try something new. I can't live like this....not happy anyway"
Although I have RA not AS we're all in very simular boats. The goal of these medications are to slow the progression of the disease. Try to think of it that way. This is going to be a step in the right direction for you.....and your young family. These medications are not just for pain; although they go a long way toward stopping the pain. They are meant to slow or stop the progression of the disease and that's so important.
Humira is in the same class of drugs as Remicade. I had amazing results with it for two years. I have however just recently been taken off of it due to some side effects that could be dangerous. Sometimes that happens; and there are other medications you can try. With regular blood test and doctor visits they catch problems early and the majority of the time can be reversed once the medications are discontinued.
Hope everything goes smoothly with your first infusion. We've got lots of friends here on that same medication. I'm sure they'll be around soon.
Andy, glad you made it over here. First, Remicade really helped my function. I highly suggest that you get some Physical Therapy with it as it will help you a great deal. Just remember you have to start slow and rebuild your body. It starts with baby steps and then goes upward. But I believe you can gain a lot of your life back.
As far as your kid coming, what is important is that you love and interact with your child in whatever way you can. Those things are what will make your child happiest and what a lot of people forget to give. You can be a great father even if you can't do sports like you used to.
I have a lot of pain in my spine and they are checking me out for AS which I really hope I don't have on top of RA and the multitude of other problems I have. I mean what are the odds to get that much damage going on in my body. But I identify with your fear. Do learn as much as you can about your illness and all the thing that you can do.
Hi KelStevAndy, glad you made it over here. First, Remicade really helped my function. I highly suggest that you get some Physical Therapy with it as it will help you a great deal. Just remember you have to start slow and rebuild your body. It starts with baby steps and then goes upward. But I believe you can gain a lot of your life back.
As far as your kid coming, what is important is that you love and interact with your child in whatever way you can. Those things are what will make your child happiest and what a lot of people forget to give. You can be a great father even if you can't do sports like you used to.
I have a lot of pain in my spine and they are checking me out for AS which I really hope I don't have on top of RA and the multitude of other problems I have. I mean what are the odds to get that much damage going on in my body. But I identify with your fear. Do learn as much as you can about your illness and all the thing that you can do.
[/QUOTE]I'm doing a lot better than I expected without my Humira so far. I've only missed two injections so far (I was taking it weekly). I'm still able to take my MTX so that's a good thing. Last year I was really sick with an infection and was off of both for about a month. That was horrible; but this is actually going pretty well. It's still pretty early though. I go back to the doctor in about 4 weeks and we'll see how I'm doing. Right now I'm HOPING I can manage on MTX alone. He's given me information on Rituxan and Oreincia (I think I've spelled that wrong) and he wants me to consider one of those because those are in a different class than Humira, Enbrel & Remicade.
We'll see. Everyday is different. I try real hard not to get too far ahead of myself.....but I always have high hopes. Never hurts right?