@Denise
I have not tried droxidopa (brand name Northera) but I do know some patients on it.
Thank you and I just got off the phone with the Nothera (Droxidopa) Support Center and although they were very nice, I went in circles and did not get a lot of info.
I asked about their experience with the manufacturer and specialty pharmacy and they indicated that it was pretty good - especially the manufacturer (I believe it was via a dedicated support center). From what I was told, the people from the support center were surprisingly helpful.
They explained that it is only available through a specialty pharmacy, like you said, and for whatever reason, it will never be made available through regular pharmacies like CVS. The only option is to have them mail you a free 14 day supply and follow the tapering schedule which I am not going to do b/c my body would never tolerate it. You would have to take three pills on the very first day and then every other day double the dose and my body just does not work that way.
As for cost, I was told that there is a patient assistance program for droxidopa - perhaps the rep who calls you (is that someone from the support center perhaps?) can send you materials in writing.
You are correct and I was told that I qualify for the program so the medication would be free. However, I am switching insurances in Jan (to a different plan through Covered CA) but I don't think that would change anything.
My frustration is that my cardio told me that he has never prescribed this med and has no experience with it. He wanted me to talk to the Noethera Center reps but they could only talk about logistics and not medical questions. From a logistical perspective we decided that I will keep my name on the list and after I see my cardio in January and also get my new insurance, I will call them back if I decide to pursue this med.
He transferred me to a pharmacist and said she could answer the medical questions but unfortunately she just kept referring me back to my own doctor (who has never prescribed this med before!!!) I asked her generic questions that were not about me re: the mechanism of how Droxidopa works, what are the side effects, how does it compare to Midodrine, etc, but she really could not provide much info.
I asked what symptoms Droxidopa targets and she said it was made for patients with Parkinsons Disease whose BP drops when they stand and they get dizzy and pass out. This is NOT me and I told her my symptoms (consistent low BP regardless of position, low blood volume, severe tachycardia without beta blocker, shortness of breath, etc) and she seemed to imply that I would then be taking it "Off label."
I asked her about the black box and other warnings which include heart attacks, arrythmias, congestive heart failure, and NMS (neuroleptic malignant syndrome- which can be fatal!) and she said she could not give me any statistics or percentages and that "Every med comes with some risk" and they had to list those due to "Post marketing cases in Japan." She admitted that U.S. doctors do not yet have experience prescribing this med.
Overall, while both people I spoke with were nice, I am more convinced than ever that this is not the med for me. Maybe if it is on the U.S. market for a few years and doctors get experience prescribing it AND can write the prescription in any way they choose (i.e. try one pill a day for a week and if okay, then increase to two pills, etc) then I am not going to be a guinea pig.
I don't mean to sound angry but this was a frustrating phone call!
