New here!

[alhartzler]

Thanks Sangye and Hal, (and all)
I feel pretty good today, and know it's the prednisone. I am counting down the minutes until I can get the ball rolling tomorrow. (Monday) I had an appt scheduled for next Friday with my rheumy, but am going to insist on being seen tomorrow. I'm pretty sure she will see me. And then go from there with Cleveland center. I called them on Saturday, but Monday is a holiday, so can't schedule appt until Tuesday, but at least my information is in their system. My local rheumy does always do blood and urine, including ANCA panel. So, she is good in that sense. I just think she falls short, because she leaves too much up to me to decide, which I read from you and others is a red flag. So, I don't think she really has dealt with enough cases to feel confident with her own decisions in my care. I need someone to tell me what they think would be best because they have expertise in the area. (sorry for sounding redundant) I'm sure everyone feels this way at some point in their treatment. Anyway, Monday will be a busy day for me.
Angela

[alhartzler]

Hal,
Thanks for the informative links! I appreciate it. Look forward to getting seen at Cleveland.

[Palmyra]

I too was surprised by the response at the Mayo clinic. Again, I can only guess maybe she didn't understand my inquiry. However, I am going to try Cleveland clinic next. My insurance (cobra) runs out very soon, so I am battling that currently. I have already been denied by a major carrier due to the Wegs diagnosis, so I am not sure what I will do next. My parents said they would help with the cost at a center, but I will need insurance for stuff down the road obviously. I have no idea what to do next in that regard. A whole separate issue, but nevertheless extremely important to anyone with a chronic illness. Thanks for all the good information. Anyone have trouble with insurance? Or any ideas about insurance? Any help always appreciated.
Angela

Angela, you are in Texas, correct? Before that cobra runs out, you should look into the Texas High Risk Health Pool. It is administered by Blue Cross Blue Shield. They do not deny based on pre-existing condition, in fact, that is why it was created. It covers my daughter's out of state visits to Mayo. Premiums are high, but dependent on zip code. Live in a high end area? Then you pay more for premiums. The coverage is very good.

[alhartzler]

Thanks so much for the information on the insurance Palmyra! I will look into that tomorrow for sure. This web site is such a great resource and support system!!! Thanks again
Angela

[alhartzler]

Try Cleveland Clinic...As far as I know they've always accepted anyone contacting them.

Hey all,
Just found out today I will be seeing Dr. Carol Langford at Cleveland clinic on Thursday, the 24th. Very excited they got me in so quickly! I am thankiful for all the posts and advice. My rheumatologist decreased prednisone to 20 mg, then referred my care to Cleveland docs. Will post how my experience goes there.
Angela

[Psyborg]

That is great news...keep us updated on how it goes.

[elephant]

I am so excited for you, can't wait to hear back about your trip to see Dr Langford! Yahoo!

[alhartzler]

Thanks guys! I hope it all goes well. At least I know I'll be in good hands there. (not that i don't like my local rheumy, she is very nice, and was very receptive to the idea of getting consultation there-- just think she hadn't had enough experience with this, like so many others)

[Sangye]

Yay, Angela-- wonderful news. I'm so happy you're going to CC.

[alhartzler]

Hey guys. Well I saw dr Langford and two of her colleagues today. Found out I do have kidney involvement, and will find out to what extent tomorrow. She raised prednisone dose to 60mg per day, and says I will need to start cytoxan or rituximab. Will need to decide tomorrow. Lung CT was negative. Was quite surprised about the kidneys. Anyhow, now need to figure out if insurance will cover rituximab, and then make a decision. I may start infusions here. This is what she suggested if I choose rituximab. Just wanted to update everyone.