hi jersey shore

February 23, 2010 at 8:55 pm

[FONT=”Microsoft Sans Serif”]i cannot answer all your questions, but i can tell you that it sounds like your neurologist airs on the conservative side of things. simply, cytoxan is not only for those who are dying– it is also for those who have no success with standard treatments as well as those who have particularly aggressive cidp…

there are some on the forum who have done cytoxan and have had excellent results. pam h. for example, was cured by a high dose regimen of cytoxan 8 years ago– i hope she spots your post and offers you some words of wisdom as she knows a tremendous amount about cidp first hand.

there are others too– hopefully they will be able to respond to you.

in my case, i had cytoxan but within a stem cell transplant protocol. please feel free to look over previous posts if you want to know more about that. and yes, i was able to kiss cidp bye bye after my treatment, no meds, nothing– i’m actually able to jog again.

i would recommend that you insist to your neurologist what treatment you want– and if he or she is unwilling, ask for a referral to someone who will. essentially, you have to find a neurologist willing to work with an oncologist and try cytoxan. perhaps someone on the forum knows of a neuro in your area– is that jersey??

hope some of this helps–
best of luck.

Hi Jersey Shore

June 5, 2009 at 2:41 am

Hi Jersey Shore! I too am on Medicare with Disability! I know when my husband had me on his insurance at work a few years back that they would pay 80 percent and then Medicare picked up the tab. Most of my bills got covered 100 percent. But most of the time I was seeing a doctor and not a hospital. I know there is a deductible for Inpatient and some Out Patient Care if it is a Hospital Type Facility and every now and then I would be stuck paying a bill but it was never that much. But Medicare does have a deductible.
Now I am on Humana Medicare and on the RX plan they have. I do the Mail Order for my scripts. And have to get approval for any drugs that are high cost. They denied me one medication because the cost was over $400.00 a month and said I could go generic. The doctor then had to call in a diagnoses and why I need this medication. Then I got approved. If I go over the Out of Pocket expenses of $5000.00 then they call it Castrophic and they cover 100 percent of my drugs. There is a loop hole in that too! Stage 1 you pay the Co Pays. Stage 2 you pay 100 percent until you reach Castrophic and then they pay 100 percent.
I do know that Medicare has a deductible and you have to meet that deductible first before they start covering things. Not sure what type of Medicare you have because they changed things when Bush was in Office. Medicare when I first got on did not cover Medications and I had to pay out of pocket for them which was costly. Then they offered the RX Prescription Drug plan which I got into! I have noticed though when I have been in the hospital that Medicare has not covered the drugs they used to treat me with. And got stuck having to pay for them. So I think they changed some rules there. Humana did cover my Rituxan but I had to go to a facility that was a provider and get approval. But that is because I have the Humana Medicare. I had to pay $23.00 extra a month for that service.
My best advice is to call Medicare personally and ask them why and what they would best suggest to get these infusions covered. Tell them you have a Primaryand that Medicare is considered Secondary! See what they would suggest. Also call your BCBS and see what they suggest. Find out what you have to do to get these infusions covered 100 percent. They might know the loop hole and give you the best advice and then have the bills resubmitted. I know when my father took ill and had to be transported by ambulance they refused to cover the bill because they claimed it was not life threatening. My father had a bleed on his brain and that was not life threatening! HELLO! We called his Insurance and they told my mother what to do and she had to get a doctors note to the Insurance claiming my father was in a life threatening state. You may have to do something simular. Call each one and get the facts first and then go from there but make sure you talk to somebody there that has alot of experience like a supervisor that knows the ropes very well!
There may be a loophole around this! I wish you the best of luck here and hope things work out for you! Even let your doctor know the problem. They too might be able to call the drug company that offers your treatment and get you on the Infusions at no charge. Find out those loop holes for their may be some you can use. Hope this helps! Good luck Jersey Shore!
Linda H