Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Ok ,,I'm back again !!

Thanks Possie, I'm doing better to day now that i've upped my pain meds again ! i did'nt want to but it got to paion that i had to , see i've been trying the last two months to reduce my meds and see if maybe now that i'm enbrel ( which) i hope is working and will contunie to do som ) that maybe i could go with out the pain meds . I was wrong i now know where my pain level is and know that i cant go with out the pain meds. but its still scarry to think no one can tell me what the long term effect are of taken such a heavey duty pain drug for a long time !.

I really hope the Reicade works for you , it worked for me almost right away but i begane to have reactions to it after about my 3 infusion. nowthing searious at first but they kept getting worse with each infusion. So at the 6th infusion i rally scared the nurses and myself. My blodd pressure went though the roof and i got this huge pain in my chest and left arm! . They quickly gave me some sort of steroid that stoped the reaction and bought my blood pressure down but the pain never went away for some time. After the cheast pain came over me i alos got a sever pain at the base of my skull which slowly moved down through my entire body . I could feel it moving from join to joint as it worked its way down both sides of my body. when it finally got to my toes it went away except for my hands, wrists, knees and ankles. The next morning when i woke up my hdand wrist where swelld up and painful beyon beleif. i could'nt use my hands for two days. the my ackles began to hurt also. anyway to make a long stoy short i'm still a great deal of problems with these joints and cant seem to get any answers from my docs either. they seem reluctent to say that it was the Remicade that caused it . Now please dont let this scare you my reacation is not the norm. I'm special .
As far as being able to walk my doc is right in my case because of the way i have fused and inpart becasue of the curve i have in my spine aswell , i cant walk like i use to and it wont get better with exersise because its macanical ! i cant change they way the fusion as happend and surgey cant correct it either soooo the sad story is i am destended for life in a chair . Now not full time i wont use it around the house . buit for any type of getting around that requires even small distances i will have to use the chair. It's ok , i guess becasue of my faith now i find it easier to deal with things in my life . if this had of happen two years ago , it would have been a differnt story . I hate to think of what i would have done. that was very very dark time in my life that i'm so thankful i lived through . If it was'nt for finding this web site and getting back to my faith i cant honestly say i would not be here today.


Anyway i got to go .. you take care of yourself , May God contunie to bless you and your family . your in my prayers and remember .......


Keep on Kicking


Martin

Martin, it's good to have you back. I'm so glad the enbrel is working well for you. I know what you feel about your kids. It's so hard to have them grow up and "off they go" Both of my children moved 4000 miles away to a little island in the Carribean, now that's really moving away . How dare they move south to an island and leave me in cold damp PA
You are one lucky man with two wonderful children, a loving, caring wife, and, a strong faith. That same faith is the only thing that has kept me from falling back into a deep depression again this year. Hold on to it tightly. I frequent the words of "Footprints in the sand" quite often and do believe He has had to carry me alot the last 2 years.
Cindy