Ankylosing Spondylitis for Patsysue

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Jemima Puddleduck
Regular Member


Date Joined Oct 2006
Total Posts : 41
   Posted 4/26/2007 9:13 PM (GMT -7)   
Hello Patsysue,
My Heart goes out to you & your son. How long has he been on ENBREL? Any other meds?
 
Like yourself, my son has chronic conditions that causes him a lot of pain (rheumatoid arthritis & psoriatic arthritis). He was diagnosed at about age 8 with juvenile rheumatoid arthritis but went into remission at about age 12. At age 19 it started flaring again and by age 22 it became a real "problem". By 25 it was way out of control and at age 28 (last year) he was unable to walk. In July he had THR (total hip replacement) and a diagnosis of psoriatic arthritis as well. The actual psoriasis lesions seem to finally be responding to treatment. WooHoo! Psoriatic nails aren't doing as well.
By the third week though, his joints know he's due for his REMICADE infusion.
 
He's been told he will need his other hip replaced and his knees as well at some point. His ankles are now getting involved. He has the HLA B27 genetic marker that is often associated with Ankylosing Spondylitis. I pray that he doesn't develop this as well because I know what a debilitating and painful condition it is.
 
As parents it's very distressing to see our kids in pain. My son gets angry at times and has uttered the "wish I was dead" but he's learned that anger isn't going to make it go away and that he has to have a positive attitude. He's doing much better now. One thing that has made a big difference is that he has found an aggressive rheumatologist that REALLY cares and wants to see M. lead as "normal" a life as possible. He has a great support team of DRs, family & friends. Even his place of employment!
 
I think it's an excellent idea for you to be involved and work as an advocate for your son. If you're not happy with the rheumatologist is it possible to find a new one?
 
Here's a web site that has some useful information on it:
http://www.enbrel.com/as/enliven-services.jsp
 
There's a section that may be helpful when he is no longer eligible to be covered by your insurance. It's the REIMBURSEMENT section. Some uninsured patients may qualify for FREE Enbrel through numerous programs.
 
Please look at this as well about treatments:
http://www.medicinenet.com/ankylosing_spondylitis/page4.htm
 
If the ENBREL doesn't seem to be working discuss other treament options with your son & his doctor. It can be a lot of trial & error to find out what will work best for him. Maybe a visit with a therapist will help with his anger issues. Ask for a referral.
There is a wealth of information on the internet, but you have to look for it. You managed to find Healing Well.

So keep up the search. You're lucky you can be with him, I'm separated from M. by 1902 miles. sad
 
Good luck & let us know how he's doing. Be sure to take care of yourself as well, even if it means seeking some help for your own sanity.

-Jem

Post Edited (Jemima Puddleduck) : 5/1/2007 11:21:24 PM (GMT-6)

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