Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Remicade Update ...Not good!!

Hi guys , its been awhile again since I’ve been here . My last post things’ where looking great, very little pain, cane was put away. Things where looking up. Well about a week after that post i was moving a office chair when i felt a POP ! In my back. Turns out that pop was a vertebra breaking !! It never really hurt at first but after a few days i was unable to move with out help. Anyway to make a long story shorter it was what they call a stable break so there was nothing that they could do i just had to be careful for awhile until it healed on its own ....three months later its finally feeling better. Now the other thing ...during this time i had my second and then third infusion of Remicad. On the third i had a bite of a reaction during the infusion. that wasn’t so bad they just gave me some sort of steroid that stopped the reaction and continued on with the infusion.. went home felt great .. noticed my shoulders seemed to be hurting me a little nothing to be concerned about .. 6 weeks later went for my 4th infusion!! not a good thing ! had another reaction this time they brought in the "crash" cart and called the doc's in too ..Thought i was having a heart attack!! so again they gave me the steroid only this time it took longer to bring me out of the reaction.. during this time a sharp pain started at the base of my scull and made its way down through my whole body . I could feel it hit every joint as it made its way down to my toes. But after awhile the pain went away and they talked me into continuing with the infusion . Never should have listened. I should have got up and walk out.. Anyway the next morning when i woke up i could move.. My left hand and wrist was swollen and hurt so bad i could even touch it, my right hand hurt but at least i could us it a little. My elbows, shoulders, hips, knees and feet hurt beyond what i ever experienced before. I thought i knew what pain was through my years of dealing with AS ..But i was wrong! . The pain and the swelling did go away after about two weeks but sense then i have had what they call a minor or Minnie stroke i’ve lost about 25 % of the feeling in my left side of my face, the rest has come back (my left arm and leg are normal again) . There doesn’t seem to be any other side effects from the stroke. i'm having test done in order to try to find out why i had the stroke and if it was what the doc called a warning !! Holy carp and warning to what?
Anyway now that I’ve stopped the Remicad the pain is coming back, slowly but surely.. Oh i don’t want to go back to where i was... But... you know its not all bad.. a year ago all this would have destroyed me... but not today.. The reason? I'm glad you asked... its my relationship that i have with my Lord and Savior ... Over the last year i have taking and given all my worries and troubles to Christ.. Oh what a differences it makes when you realize you have a way out, a way to let the frustration go. Now i know what some of you will say, oh great he's gone crazy ! he's turned into one of those Christian freaks ! Well ok if that's what you call me that’s fine, but i wish you all could experience the joy and the comfort i now have. Do i still have bad days ? oh sure i do, maybe more then ever, but i never get to that point where i feel that i'm in this alone. I have the ultimate support system now... anyway i wont preach ... But i am willing to talk to anyone who wants to talk just send me a PM.. Drop me a note... so anyway take care guys.. While my body feels like crap, my sprite is flying high and free... and remember

Keep on Kicking


Martin

Hi Martin,

What an awful thing to happen!

It is probly a miracle you are still here.

It just shows you that no matter how careful you are things can still happen..

There is nothing wrong with you trusting and believeing in Jesus. Everyone has there own way of religion or believing in something. I have seen the power in prayer.

I am just glad that you are going to be ok,

Lisa

Oh my, how scary Macky. I am so thankful that you are ok. I am thankful for your peace. It is a wonderful feeling to understand that in the grand scheme of things, we are ok.
I am happy for you. I do hope you get some pain relief.

Blessings.
Possi

Hi...it's good to know that everything is better with your health and you're doing great...I just can imagine the joy you having when you turn it all over to the Almighty God...a life devoted to things is a dead life,a stump;a God-shaped life is a flourishing tree..Prov.11:28...take care ...
because of him I can face tommorrow

Hi Martin,

I read with interest your reaction to Remicade. I am not at all certain that I ever want to take that path.

It is good to know that you have been able to encounter God and that you have renewed your interest in Chritianity. I know the peace that comes from being a Christian. Personally, I am an RC and I go to daily Mass. It makes a big difference to my outlook on life. Today's Gospel reading served as a reminder that God is waiting for us:

"Come to me all you who are weary and overburdened and I will give your rest...." (Matt 10:28 I think)

This verse is something that gives a lot of comfort in a time of stress. It is a verse that keeps popping up especially when I am stressed. Considering that I lost my temporary job, the mere fact that this was today's Gospel reading brought tears to my eyes.

Now that you have experienced a mini stroke you need to find out the reason that it happened, and then keep on working so that you strengthen your body once again.

Peace

MaggieinOz

I'm glad to hear you are ok, sorry to hear about the scare and all the trouble! I'm not sure i would like to try that path either..I guess as they say, it could've been worse but I always say pain is relative. I'm glad to hear that you're coping with all of this in spite of disappointment and more pain. I'm a christian too, and I know what you eman when you say that you don't feel so alone anymore. I feel lonely often but I don't feel alone as much as I used to. Because God has been faithful to me as if someone were actually here. I'm so greatful for that. That will give you rest so that when you fight with pain and all the other things that come along...you will have strength because you were resting. Keep on going..please keep writing to update. My best to you.. Amy

Martin,

What a scary experience for you. Reactions like that can be terrifying for sure.
I hope that you can get some answers regarding the mini-stroke.
And hope you have pain-free days coming your way soon.

Take care,
Pam

HI Macky,

Sorry to hear about all the pain and such. Good to hear about your faith, very inspirational.

Best to you!

Tim

Holy crap, Macky!! I'm so glad you're all right!!

Man, it's a good thing Remicade is a hospital visit and not a shot you give yourself at home. We'd be Mackyless if it were otherwise. I'm glad you've regained the use of your arm and leg. Keep my fingers crossed that the feeling returns to your face.

Sorry to make this short, my friend, but Brian and I are getting ready to go away for the weekend and he's just called to me for help. You take care of you, please?

Many gentle hugs,

Macky,

I do n't know what to say. I hope you recover some of my friends (40-50 age group) have had strokes in the last 2 years and they've recovered well, so I'm hoping the same for you!

David