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valiz

paying for Northera

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I'm wondering how many of you with dysautonomia  have or are taking Northera caps (Doxadopa)?  I started taking it 2 1/2 years ago.  I has been a "game" changer for me.  It has given my quality of life back in many respects.  From the beginning of taking it I received assistance from Caring Voiced Coalition with the co-pay, in fact they paid all of the copay.  This year they are not giving out ANY grants.  They gave me names and numbers of other organizations but none of those helped me.  I called my specialty Pharmacy today and they said my bill will be $2,600 some dollars the first 2 months and then by March through the rest of the year I will have to pay 380. some dollars a month because by March I will be through the "donut hole" on my Medicare.  The Pharmacy said they will try to get me help but no guarantee.  I have an IRA but no huge amount but too much for help from Medicare extra help.  I guess I fall through the cracks.  It is very disheartening.  If anyone has any suggestions, let me know.  I am already on Florinef and Midodrine did not help me.  My diagnosis is OI and PAF.  I was on this site quite a bit when I first was diagnosed but have not recently.  I hope all of us can stay upright!   Elizabeth

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That is terrible. Northera helped me for a while, so I know what you mean about needing this med. The Caring Voice helped me afford it too.

Can your doctor help you find funding? The university hospital that I go to has a patient advocacy / prescription assistance department that helps me apply for assistance with meds from different places, if you qualify. Pfizer is currently helping me with my Xeljanz for RA. I just reapplied with the help of the hospital and should find out this week if I was accepted again this year. This is another reason that I am such a proponent of going to large university hospitals for treatment, but I know it isn't possible for everyone.

I hope you find an answer. If I hear anything, I will let you know.

Kim 

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Thank-you for your response, Kim.  I only had Northera for 4 more days so I "bit the bullet" and ordered my Northera at the specialty pharmacy and charged it.  I also contacted my Physician's office to see if there might be something else to take but I don't think there is anything in that classification.  The office is looking in to see if they can get me any assistance but I doubt they can.  I have been on the phone for hours at a time making calls or on the computer looking for help to no avail. I appreciate you letting me know if you have any new leads.  elizabeth

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Hi Valiz.  I know it’s somewhat controversial but have you checked out getting it from Canada?  My docs will write a paper prescription and then I can take a photo and email it to a pharmacy there.  I did this for Corlanor when my insurance wouldn’t cover it.  I had zero problems with getting it or the drug itself.  One batch came from India and one from Turkey.  I realized that I was getting rebound tachycardia when the drug wore off so stopped it but would do it again if something wasn’t covered.  Prices were much, much lower.  Just a thought and please don’t anyone flame me!

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