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Pharmacy for Evrysdi
Hi everyone! I have a question… It may be a little unusual. What pharmacy do you guys use for your Evrysdi delivery? I use A…DO (you probably know what it is), and I hate them. It’s the worst experience ever, almost every time. Initially, they called, pushing you to order a refill literally one week after the previous delivery. It was going on for months and months; finally, they probably learned something because I refused to do that every time. At some point, they made available refills on their website; I succeeded maybe three or four times doing that, but soon they did another dirty trick: they allowed you to order medication, and the status showed “order in progress” with specific delivery date, then the last day before or the day scheduled for delivery they called you and tell that you ordered medication too early and insurance refused to pay for it. It happens again and again. Are there any other options? Or are they the only source? I am not a very sensitive person, but they managed to get under my skin with their business model, their phone call style, etc. Please share your experience if you can.
Why am I asking this today? Make a guess: delivery was scheduled for today, and an hour ago, I got an automated phone call notifying me that my order was stopped. Yes, STOPPED. Without any explanation. “Please call us immediately to clarify the situation.” It’s unbearable.
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4 Replies
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Sorry your experience has been so frustrating. They do seem to call quite soon for refills. I have my theories on reasoning, but it is what it is. Unfortunately, I believe they have exclusive distribution rights for a specified time period. For how long I’m not positive. I’m wondering if it will be difficult for smaller pharmacies to carry the medication because of the cost. It’ll definitely be interesting.
As for now typically I don’t answer until I have one bottle left. So far it’s worked out. Have you talked with the pharmacy?
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They are the only pharmacy under contract in America to sell that stuff. It could be worse. It could be better. If you order by phone they follow a script that treats everyone as if they were a new customer, which wastes enormous amounts of time. I have been taking it over four years, and I’m on dose number 1,494. They always ask how much you weigh. That’s none of their business. It is so much quicker and easier to order online, but now there is this new thing where your browser can’t find their website to be secure and won’t connect you. They are supposed to send me email when it is time to refill my subscription, though this past year that automated reminder has not been functioning. If nobody mentions to me that I am down to my last bottle, I won’t remember.
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Yeah, I’m usually working with 4 bottles at a time because they’re so pushy about ordering before needed. I have to ignore the daily calls for a week+ and I recently started ordering as far off as they offer in the iphone app after that. I’m afraid waiting too long might cause an issue so I don’t like putting them off for too long. As long as I can get to it before the expiration date I guess it’s not a problem, but still really annoying.
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Good morning. I switched from Spinraza to Evrysdi in September and use the same pharmacy. Other than the very first shipment being sent to the wrong address, I haven’t had any issues. They’re not great, but nothing as frustrating as you’re describing. I have it down to usually just starting my second bottle of previous shipment when the next one gets scheduled. Personally, I’d rather have it early than late, so no big deal for me. You can also sign up for text refills to see if that helps. I use it, get a text that I reply “Yes” to within 72 hours and then it’s just a matter of when it will be delivered. That may be different based on your prescription insurance benefits.
As far as them asking weight as another comment addresses, it may not be any of their business, but if it’s a data collection point being used to assess the need for higher dosing amounts like BioGen did over the last few years for Spinraza, they already have the data and it may not be a bad or for nefarious reasons.
Good luck! I hope your experience improves.
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