Update on us (long)

[Guest guest]

Hello group

I've gotten hit and miss about posting, but for those who don't know me...

My son Rob is 18 (almost 19) and was diagnosed with juvenile ankylosing

spondylitis at age 12. However, this was not the start of his problems.

suffered from severe lung issues beginning at age 1. He was diagnosed

with asthma, but all the treatments never did get him under good control. Early

on in his school career it became evident that 's learning processes were

different. He had great difficulty mastering written material and expressing

himself in writing. We have spent years working with tutors, finally utilizing

medication for inattentiveness in order to help achieve success in

school. Amazingly, graduated from his high school, a blue ribbon school

of excellence, with a 3.1 GPA. Pretty impressive! We are very proud of him.

At age 12, suddenly lost the ability to walk because of severe pain. It

was found that he had effusions in both hip joints, as well as inflammation in

his spine and heels. He was diagnosed with juvenile ankylosing spondylitis.

Thankfully, after years of treatment, does quite well now with this form

of arthritis, and has few issues with walking. Interestingly, the treatment

medications drastically improved his lung function. It is believed that the

inflammation from the JAS initially affected his lungs before making its

appearance in his joints.

Not two years after the arthritis diagnosis, was diagnosed with Alport

syndrome, an unrelated kidney ailment. Thankfully, he is doing well. His kidney

function at this time is normal. However, the possibility of the disease

ultimately affecting his kidney function precludes being able to take any

sort of NSAID (advil, ibuprofen, naproxen, celebrex and the like) for his

arthritis pain. It is unknown whether his kidneys will eventually fail and he

might require dialysis or transplant.

Last summer, before his freshman year of college, he underwent major surgery to

repair a chest defect that was causing pressure on his heart. He now sports a

titanium bar under his sternum. This will be removed in 2 years, not soon enough

for Rob, who loves to work out and now has restrictions from doing so. He is an

incredible person full of spirit and determination. He rarely complains about

anything physical, and has dealt with all his diagnoses courageously.

has never been a huge fan of school, but now that he is in college and

majoring in criminal justice, his career aspirations have come alive. I have

never seen him this motivated.

This semester, he was diagnosed with mononucleosis, likely a result of the

immunosuppression from the medications. He drove home on a Tuesday with a sinus

infection and eyes nearly swollen shut with pink eye infections. He only stayed

home for 2 days and was back in class by Friday of that week.

Needless to say, Rob is my hero!

I watched my mother suffer for years with rheumatoid arthritis, beginning in her

40's. I had symptoms in my teens (hands) but ignored them for years. I had an

acute attack in my 20's that was written off as a viral infection; it did

resolve. I still had intermittent hand pain. At age 37, I was in a severe auto

accident that broke my right femur completely in half. I also had a head injury

and scapular fracture, as well as nerve and muscle damage to my thigh where the

bone protruded. After this accident, I started again with symptoms of RA, which

I still ignored. About a year after was diagnosed with JAS, I was waking

up in the middle of the night in pain and my hands forming the letter C with

stiffness. Then pain began in knees, feet, and I finally consulted my doctor. I

was sent on to the rheumatologist and ultimately received a diagnosis of RA. It

has gotten progressively worse. I've had periods of remission while starting

methotrexate, and also with Enbrel, but eventually, my body found a way around

it and I flared again. I've spent about the last year and a half on prednisone.

Every time I try to wean off, I get a horrible flare that knocks me on my butt.

Finally in September of last year, I agreed to try Rituxan after failing on

Humira. I had an anaphylactic reaction. So in November, I tried Orencia. It can

take up to 6 months to 'kick in'. I have been growing more and more upset that

it hasn't started working yet. Have lived on prednisone again, tried to wean in

the hopes that Orencia would start working but no dice. About 3 weeks ago, I

joined a new initiative at work to get in better shape and eat right. I'm proud

to say I've been exercising religiously. One of the things that has helped me

the most has been Arthritis Aquatics sponsored by the Arthritis Foundation at

our local Y. I also received my 6th infusion of Orencia last Friday. I woke

Saturday morning, and although in my usual pain, noticed that my stiffness was

about 1/2 OF WHAT IT USUALLY IS!! I'm still having much the same pain in knees,

elbows, hands, etc, but my stiffness has improved! I'm also, I think, feeling

the benefits of the increased exercise. I have hope!!! I have to think that

everything is falling into place, finally! I'm still on 10mg of prednisone a

day, and won't try to wean further until my monthly infusion in April. But after

that, I will be weaning again! I'm so excited! Many of you may have read my

ranting and raving post a few months ago. I felt really awful about that,

considering what my own son and so many other kids on the list have gone

through...so I wanted to share my great news and blossoming hope!

I also hope that Rob's story will offer hope and encouragement to everybody

here. He is a fighter, and he has been such a model for me, and yet I still have

not handled things nearly as well as he has.

If you have read all this you are special indeed!

and Rob 18 JAS