Joe- Welcome (sorry so long)

[Guest guest]

Hi Joe,

I don't usually write much, I am more of a lookie loo (is that how you spell

that?) anyway you know what I mean.

You've been through alot, I am sorry to hear that. I wanted to let you know

that I am taking Enbrel, 2 shots a week and MTX 1 shot a week (25mg) and I am

still trying to get off of the prednisone. I am currently at 7mg and the Doc

wants me at 5mg. I just can't get there. There is something about breathing

that is holding me back. For some reason when I get down to 6mg or 5mg of Pred.

I end up getting pericardis (inflammation of the heart). And it is very

painful, with all the pain meds that I am on, it still hurts to move and breath

at the same time.

But I have been on Enbrel now for 5 months, nothing has changed. I've heard and

I am crossing my fingers that it can take up to 8 months or longer to kick in.

I am waiting patiently. I really just want to get off the Prednisone, I have

been on that since I was diagnosed back in 2001. But I have come a long way I

started off on 80mg a day and I was in a wheelchair when I finally got to leave

the hospital after 2 and 1/2 months. And two of those months I was in a

medication induced coma, becuz they couldn't figure out what was wrong with me.

I was in soooo much pain and the fevers where so high 107.9, with no seizers,

thank GOD!!

But I went through the same thing as you, going to the ER and getting sent home.

Going to the Urgent care and getting sent how with antibiotics and pain meds,

etc.... That went on for a week. I was going like every day/night, my husband

was calling 911. and they just kept sending me home, telling my family stop

babying her, she just has a flu.

Yeah right, when they finally admitted me into this little hospital that had no

clue what to do with me, I went into conjunctive heart failure, they decided to

medivac me to a bigger hospital, UCLA in Los Angeles CA, about 2 hours from

where I lived. They told my family not to worry that I would be going home

within 3 days. 2 and 1/2 months later, (I guess they were a little to cocky for

their own good) they were stumped. They couldn't figure out what was wrong.

Then my body decided to go toxic on them. All my organs were shutting down, one

by one. I was minutes from dialysis (sorry for the spelling) becuz my kidneys

weren't working properly. Then I guess all the medication and all the prayers

hit at the same time and everything started to stabilize. The reason I became

toxic was becuz, at the other hospital I kept going in with a sore throat, they

would look but couldn't see anything. My throat hurt so bad that I couldn't

swallow my own saliva. My sore throat was down

deep, they would of had to go down with a scope.. Well they let that go for

too long and I got Toxic Shock on top of being diagnosed with Stills.

I have a son that is 4, he was only 6 months at the time I was hospitalized. I

am married, we have separated a couple of times but we always seem to work

things out. This disease is hard becuz I try so hard not to be selfish in our

marriage, but I can't do the wifely duties that most wives are able too. And I

married a man that was raised that the women cleans, makes dinner, takes care of

the family. Well sorry honey that isn't going to happen anytime soon. It is

hard enough to take care of my wonderful, but very active son.

Anyway, sorry I didn't mean to type so much.

But welcome to our family. Everyone here has been through so much and we all

have so many different experiences that you will most likely find your answer to

any question you might have. Most of us that have had Stills for so long, know

more then the Docs. There are individuals that have had JRA/Stills since they

were little kids.

So we are hear for you, whether you need to vent or ask a question.

Take care!

Love and Support Always,

Keri in CA