Rob update and a little about me

[Guest guest]

For the new ones here, my son was diagnosed at age 12 with juvenile

ankylosing spondylitis. After a few rocky years of diagnosis, he finally was put

on Enbrel and it was his miracle drug. It put him in remission, which he is

still enjoying (at least I think, he won't tell me if he hurts and insists his

arthritis is 'gone'). He has been off all his arthritis meds for about 3 years

now.

Well, last week, where he goes to school in Indianapolis, there were 2 inches of

ice on the streets. He was bugging around and fell. He dislocated his kneecap

all the way to one side. He pushed it back into place himself. He still has his

high pain tolerance from before, and so he went back to his apartment, thinking

it might be better in the morning. The next morning he called me in terrible

pain. So I made him go to the ER. They xrayed it, and nothing broken, but there

was fluid in the joint, indicating there might be a tear. He is not doing well

at all, in terrible pain, and not able to walk on it. He is in a brace and on

crutches, awaiting an MRI on Wednesday. Hoping he doesn't need surgery, it will

really be difficult for him in the middle of the semester. He has 3 semesters

left and wants to finish college so badly. He walked on crutches for a mile and

a half on Saturday to get to where he had to take a makeup test from when

classes were called off due to the ice storm! My trooper....but I'm sure that

will get old. Hoping his arthritis doesn't come back after this experience.

Please pray he heals and hasn't awoken the monster...His rheumatologist was

delighted with his remission but cautioned us a few years ago that AS rarely

stays in remission forever...

I have adult onset RA, diagnosed about 8 years ago. I was doing pretty well on

Simponi when I started getting terribly sick at the end of december. I had one

infection after the other. I finally was diagnosed with mono, and they think I

have had it since January. I am now off my simponi and methotrexate, to let my

immune system recover. And my joints are starting to flare. I've tried all the

TNF inhibitors and consistently get infections on them, so those are now out of

the picture. I tried Rituxan and had a horrible allergic reaction. I was on

Orencia for about 2 years and every time I took the infusion, I'd be down sick

for 2 days afterwards. So I guess I am looking at Actemra next, once I am able

to start back on meds.

My husband had prostate cancer last year, and had surgery, and I am happy to say

that his last tests show that he is cancer free! We are blessed!!

Prayers for would be appreciated!!

, 50, mom to Rob, 21

Jaye Update

>

> Hello all,

>

> Just thought I would let you all know that things are going

> well. We saw the rheumy today and we all are pleased to announce

> that things are going very well. He was pleased to find

> only minor swelling in one of Jaye's knees. We are so

> thrilled with the Enbrel and how it is helping so much.

> Two weekends in a row, we have spent a full day on our feet and

> Jaye has kept up. Last weekend we had gone to

> Joplin to spend some time with one of my brothers. He is

> stationed in Japan but was baack in the states for

> schooling. We went to the mall, played putt putt, walked

> quite a bit, went to the motel for a nap and then went bowling.

> Jaye said she had more fun last Saturday then she can

> remember ever having. This weekend we went to KC for the appt

> and so had to go up ahead of time and spent time shopping. We

> walked the mall for four or five hours and out to eat before

> going back to the motel. She never complained at all.

> NONE!!!! Now this was her birthday shopping

> excursion so she was trying on clothes and shoes so that

> is exciting for her, but also that is exhausting for

> anyone. WE LOVE ENBREL!!!! The rheumy said we are going to

> leave her meds where they are at this point but will begin to

> wein her off of something eventually. I am happy to stay

> the course we are on now. I was actually hoping that he

> would not try to wein yet because I do not want to rock the

> boat. Jaye has been on Enbrel now for 8 weeks and

> we are EXCITED. She has a bit of pain in one wrist but no

> swelling and that was the only joint she had any pain in at all

> today. That is amazing. I do not think we have ever gone

> into the appointment with just a little pain in only one joint.

> I just had to share our excitement.

>

> Veri & Jaye 17 poly

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