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Well Sangye, I think the fatigue thing started back last June when I had the lung infection. Since then it is very inconsistent, even from one day to the next. I just try and not overdo it.
Well Sangye, I think the fatigue thing started back last June when I had the lung infection. Since then it is very inconsistent, even from one day to the next. I just try and not overdo it.
If you are anything like the rest of us you would probably have died without the steroids. They have been proved to be an essential part of the treatment for Wegs.Originally Posted by JanW
I sympathise with your troubles with osteoporosis - my own loss of bone density is off the chart at -5 and breaking ribs is a constant problem. I live in fear of falling over!
I don't know about that, Jack. Probably all the steroids I had over the course of my "asthma" wouildn't have equaled what some of you had in several months of treatment. I might have had 4 mg/day for month long periods -- less than 10 times in my life. I was on inhaled steroids as well as nosesprays however. Right now my docs are leaning towards a theory of a flare, then a half dozen years of relatively good health and then another flare which ultimately collasped my nose, lead to some sinus troubles and joint pain. No one thinks I've been flaring the whole time. There are no current plans to treat me with steroids, only immunosuppressants.
My insurance denied me Rituxan. I put a call in to the Mayo doctor and I am waiting to hear back to see if we can appeal this or if there is any more information we can send to the ins company. Any advice?
Regardless, I will be doing Rituxan, I am lucky my parents are able to help out financially with the cost- otherwise I would probably have to do the other med.
I was doing pretty good for a while - yes looks like it was because of the high dose steroids I was given in the hospital because last week I started to not feel good. I was coughing a lot over the weekend and very tired. I am on 40 mg pred now for a few days until we can get it figured out when I can start Rituxan.
Is there anything I would need to do before starting Rituxan? Such as, vitamins, blood work, urine sample, anything??
Thanks!!!!!!!!!!!
Brooke, had your doctor already submitted an explanation (and records) for why you need rtx? What was the exact reason for denying it?
One concern I have about you doing rtx by paying out of pocket is that your insurance could cancel your policy. Please read your policy very carefully beforehand. You might also consider having a lawyer review your policy for you. Losing your insurance could be devastating.
Sangye~ Yes, my doctor submitted an explanation and I believe my medical records.
The ins lady said the reason they are denying it is that rituxan does not follow medical policy and criteria - whatever that means. I guess Rituxan is not approved for Wegener's Disease, she gave me a list of other medical problems that it does cover.
Why would the ins cancel my policy?
Okay, this is EASY then. The same thing happened to me when I was trying to get Cellcept approved. They said it wasn't "FDA approved to treat Wegener's." My (Mayo AZ) doc submitted tons of paperwork but they still denied it. Several weeks into it I realized Doh! NO drug is FDA approved to treat Wegs. Not even pred! There's no such thing as a "Wegener's drug." They approved it on the spot.
So that's all you have to tell them. Talk to a supervisor. Your Mayo doc may have to send copies of research showing rtx is being used to treat Wegs, to prove that it's not an experimental drug. It's a standard drug being used "off-label" to treat Wegs.
Insurance companies will look for any loophole to cancel your policy if you've been diagnosed with something costly like Wegs.
Last edited by Sangye; 04-15-2010 at 03:54 AM.
Sangye nailed it before I could get here! That's absolutely right -- nothing is approved for WG...therefore everything's on the table. Not even the cheap stuff like mtx is approved for WG! They just let you get it because it costs pennies a pill.
Sangye, I sent you a PM about a med issue a friend's child is having; appreciate it if you could have a look.
Oh thanks Sangye!!! I think I will call the ins company now!! I will let you know what they say
Jan - thanks to you too!
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