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Crohn's Disease
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junerainbow
Regular Member
Joined : Feb 2010
Posts : 406
Posted 11/10/2010 4:15 PM (GMT 0)
So here we are , 11 months down the road. Six months since the diagnosis from the mayo. Many treatments, many failures and many crashes. Currently I am on Remicade, I will have my third infusion on friday. As I tapered down on the Prednisone ( which I have been on for most of the year ) I crashed. The joint pain was unbearable, the muscle pain was really bad, fatigue, headaches, dizziness, massive quick weight gain and the diarrhea and urgency continues. The mayo is saying that I am suffering from an adrenal issue stemming from the prednisone taper. So their response was to move me back up a level to try and stabilize me. Than if by the end of the week I am doing better, the mayo wants me to step down 1 mg at a time. Yesterday I started feeling somewhat okay.. pain was manageable, fatigue was not as bad. I had hopes . This morning I wake up and I can barely move, tired as heck, diarrhea is really bad, muscles are killing me.. and I just don't know what to think.
Is it Crohn's, prednisone, remicade, something else entirely?
Will the diarrhea ever stop?
Will the urgency ever calm down?
Will I ever be out of pain in my joints and muscles?
Will I ever be able to get the heck off of prednisone?
And how long until I know that Remicade is working?
I just want my life back...or some semblance of it.... I want to run with my kids , I want to play disc golf again. I want to go on long hikes.
thanks for listening....
there may not be answers.. I am just venting and frustrated and really dont know what the heck is going on.
MMMNAVY
Veteran Member
Joined : Jul 2006
Posts : 6927
Posted 11/10/2010 4:25 PM (GMT 0)
I wonder how long has it been since you had your ANA tested.
((((((((((((((((((((((((((((June))))))))))))))))))))))))
junerainbow
Regular Member
Joined : Feb 2010
Posts : 406
Posted 11/10/2010 4:41 PM (GMT 0)
I am looking on my chart from the mayo and don't see my ama... am I missing it?
MMMNAVY
Veteran Member
Joined : Jul 2006
Posts : 6927
Posted 11/10/2010 5:07 PM (GMT 0)
If you are on remi and having joint pain so bad you cannot or have a hard time walking, then I would think about
having an ANA blood test done.
Nanners
Elite Member
Joined : Apr 2005
Posts : 14999
Posted 11/10/2010 7:57 PM (GMT 0)
June the ANA test Navy mentioned is to see if you are having drug induced Lupus from the Remicade. Good luck!
junerainbow
Regular Member
Joined : Feb 2010
Posts : 406
Posted 11/11/2010 2:46 PM (GMT 0)
thank you ..I will have to check with the doctors.. though they seem to truly feel its the prednisone.
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