my sister....

[Lila]

Onatreetop- so glad you got your appointment! My sis's is on the 19th. I'm glad your feeling better! : )

[Sangye]

Lila, what's the connection between the trach and her Enbrel injection?

[Lila]

oh, and Dr. Ritu is a 3rd year resident.

[Lila]

Because it's an open wound. The Ebrel gives her a greater risk of infection. Her wacky RA doc told her he wasn't sure if she should start taking the Enbrel again. So, she thinks it's best to wait till she goes to JHU. I kinda agree...not sure. However, the pain is unbearable for her right now...

[Sangye]

I don't remember why she was on Enbrel, either....

[Lila]

Oh...sorry! She was on the Enbrel for her Rheumatoid Arthritis.

[Sangye]

Well, any drug she takes for Wegs is going to put her at risk of infection--they're all immunosuppressants...

However, I have no idea about Enbrel or how it works. I know studies showed it to be useless for treating Wegs, though. I wonder if she truly has RA or if it's been Wegs in disguise all this time. Any ideas from the docs?

[onatreetop]

Hey there has to be another med she can take. OMG!! This is the stuff that is upsetting to me too. There are soooooooooooooooooo many meds and so many other possiblities. If she is in that much pain she will take the pain meds. She has too!!! if I hadnt taken mine today first thing I never would have been able to get off the floor I flew to or the bed I waited in til they kicked in. you have to do what you need to until we get to the docs at JHU. i cant wait and am scared too. My mom wanted to drive me there today after I made the mistake of telling her what happened this morning. i told her they wont send me to the vasc. dept unless I am in Icu so............not happening today. hope I can wait til the 20th she said. But your sister is so much farther along than I am. I would call every morning and check for cancellations if I were her too. My body keeps changing and the symtoms more or different. I am still learning. hope you are all well and warm. It is a bomby 25 degrees this evening and I am wearing a tshirt with capris and flip flops. My kids friends think I am a freak. Oh well it beats sweating like a river.

[Lila]

I know....
She's been on the Enbrel for maybe 2 years...It has helped take the edge off. I have been wondering the same thing Sangye. I truly believe she could have had Weg's for many years now. She's def been suffering with all kinds of different things for the past 10 years or more. He crazy RA doc does not believe she has Wegener's. He says that her symptoms came on too fast! HELLO? She's had so many problems for a long time. I cannot wait till she get's to JHU!!!! I was actually able to get the day off!! YAY!! So, me and my other sister will be taking her. Her boyfriend (was supposed to take her) broke up with her on New Years day. It's prob a blessing in disguise.

[Sangye]

What day are you going? And Onatreetop, what day is your appt? I have to be at JH one day that week (different dept). If I can get my appt the same day as one of yours, maybe we can get a cup of tea?