New Member

[jennifer]

Hi,
What a great resource to have this support line, I look forward to sharing stories and providing support when I can.
I was diagnosed last year in March, 2009 after numerous hospitalizations and in and out of several ER's to try to get the help I needed. Everyone told me I had migraines. With an MRI they discovered I have a tumor on my pituitary gland. I was scheduled for sinus surgery, however, my symptoms got so bad, fortunately surgery didn't happen. I was finally diagnosed. Apparently, with the combination of the pituitary involvement and the Wegener's, I am the 32 person in the world to have this combination. Gosh, I should be playing the lottery.
I tried Cellcept initially, however that failed, I had numerous relapses and now just finished 8 mos. of cytoxin and high doses of prednisone.
This is a very tough disease process and very difficult to deal with the changes emotionally and physically. It really sucks, however, I am glad to be alive and thankful for all my family and friends support through this.
My sister was awesome, well all my sisters and family were so helpful, they set up a Caring bridge web site for me to communicate with family without me having to retell my story numerous times. It was a great way to keep all the family and friends up to date with my medical status.
I am struggling at this time with getting Rituximub drug approved through my insurance company. I have read about numerous people getting Rituximub through this support chain. If possible, I would like to hear from others about what insurance companies are paying for Rituximub, we are now fighting the 3rd and final appeal with Cigna Insurance in CO. Any advice and recommendations would be appreciated to get the drug of choice for me.
thanks for listening.

Jennifer

[Sangye]

Hi Jennifer, welcome to the group!

The key to getting rtx approved is that your doc must write a good letter explaining the reasons for using it. I assume if you finished 8 months of ctx and they're talking rtx, the ctx wasn't effective at inducing remission. Also, you must make it clear to the insurance company that rtx is not experimental. They will likely deny the first request saying "It's not FDA-approved for Wegs." If they do, that's easy. NO drug is FDA-approved for Wegs. All drugs--even pred and ctx-- are used off-label to treat Wegs.

[elephant]

Welcome Jennifer. I know there are threads on this forum regarding the Rituximub insurance stuff. Do you have a Wegeners Specialist? I have to ask. Someone else will be coming around to say the same thing.

[Sangye]

And by "someone else" Elephant means "Sangye."

[jennifer]

I have an awesome Rheumatologist, who tx patient's with Wegener's. They are denying Rtx because they are saying it is experimental. They are just not understanding our side of the story, you are right, there is no approved drug for W. however the drug most commonly used is cytoxin, so that's what they are approving.

[Sangye]

Rtx is most definitely NOT experimental. They can't deny your request based on that.

How many Weggies has your rheumy treated? Numbers really count in this game! See this thread for why: What the Newly-Diagnosed Need to Know

[JanW]

Rtx, is NOT experimental. I also have Cigna (it acquired Greatwest Healthcare, so I still have that network) and I was told that I could have rituximab with a doctor's letter. I didn't first have to 'fail' on ctx (which was the big concern I was reading about when I got diagnosed in January). I haven't had to go on it, since I've been on mtx, but it's routine that my doc's office gets it approved. I wonder how many of these letters your doc's office has written for WG patients before.

And I will say what the others have said -- having a true specialist -- someone who sees several weggies a day and not just a few a year (of over the course of a career!) makes all the difference, particularly as you sound as though you have had some trials with this disease.

[drz]

Hi,
What a great resource to have this support line, I look forward to sharing stories and providing support when I can.
I was diagnosed last year in March, 2009 after numerous hospitalizations and in and out of several ER's to try to get the doses of prednisone.
This is a very tough disease process and very difficult to deal with the changes emotionally and physically. It really sucks, however, I am glad to be alive and thankful for all my family and friends support through this.
My sister was awesome, well all my sisters and family were so helpful, they set up a Caring bridge web site for me to communicate with family without me having to retell my story numerous times. It was a great way to keep all the family and friends up to date with my medical status.

Jennifer

I think the Caring Bridge Sites are terrific. I found the posts in the guest book and best wishes and encouragement posted there to be very helpful. How many people have used the Caring Bridge sites. Most hospitals in this area seem to encourage it and usually offer free wi-fi to facilitate it's use. The staff at my nursing home used it to keep track of me when I went back to hospital with flare-up.

[Sangye]

I haven't set up a CaringBridge site for myself, but I follow a number of people on them. They're excellent-- so easy and so useful.

[elephant]

My cousin's child is on the site and she had major brain surgery and prognosis is good.