Unfortunately I am on Medicare so I don’t think the Brilinta Savings Card applies to me. I’ve decided to bite the bullet and get a one month supply as a trial. My insurance does have a “benefits card” which is just a debit card with a balance for typically uncovered medical expenses that I can presumably use for a prescription. It only has about a $150 balance so it will only cover part of one month.
I’ll use the first month to try and work out a good Canadian pharmacy to order the drug from, presuming it is working enough to continue with it.
I’m trying to wait until first week of September to call Dr Hepworth’s office to bug them about scheduling since I know they are doing their best and need some time to get everything in order.
@jrodefeld - I called Dr. Hepworth’s ofc this past Monday to see if my surgery was still on his schedule. I got a human answer (vs VM) first try. I waited until about 11:30 mountain time to call. Thankfully, I am still on his schedule as planned. I think it’s safe for you to try calling this coming week just don’t call first thing when they open. Late morning or afternoon seem to be quieter phone times for them.
I spoke to Stephanie on the phone today and I have a (tentative) surgery date! They still have not finalized the contracts with most insurance companies so things are a bit uncertain as far as that goes, but she put me on the calendar for November 11. This is considerably sooner than I actually expected and she suggested it might be moved up depending on when they get the insurance contracts sorted. But November 11 at the latest for my right side decompression and ethmoid sinus CSF leak repair.
I filled my prescription for Brilinta today so I’m hoping that’ll have a noticeable effect on my symptoms while I’m waiting. I’m on Medicare so I wasn’t able to qualify for any savings discounts so I paid full price for a month.
It was about $340 which is pretty pricy if I’m going to be on it for multiple months. I think my only other option is to try and locate a reliable Canadian pharmacy to order it from.
Next up is I’ll be speaking with Dr Carroll from Stanford on September 13. It’s a telehealth visit initially and I’ll see if he wants me to come down to Palo Alto for any additional imaging to look for a spinal CSF leak. Dr Hepworth is convinced I also have a leak in my spine but suggested I wait to do any treatment (blood patches, etc) until after surgery to give the leak a chance to heal on it’s own.
But at least I can understand where the problems are and I can be prepared for any necessary leak treatment if needed!
Things are really coming together now and I’m feeling really excited to finally fix these problems I’ve had for so many years!
That’s great news ! I’m so pleased for you that things are moving forward now…hope that the Brilinta works to reduce your symptoms while you wait. Not long away to see Dr Carroll either, let us know how that goes!
@jrodefeld - I’m also on Medicare & mentioned paying $400+ for my first month of Brilinta to Dr. Hepworth at a follow-up appt. & he told me he could have referred me to a Canadian pharmacy he recommends for expensive Rxes. Try calling back tomorrow or later this week to get the name of the pharmacy. That will save you time & energy.
HOORAY!! for a surgery date in Nov.! I hope it does get moved sooner but at least that date is solid for the moment!!
I’ve been spending some time on the Facebook group and, like me, many people are concerned about the status of their surgeries with Dr Hepworth given the uncertainty about when he’ll be able to sort out the contracts with insurance companies.
A few people said that they were able to get their insurance to pay for the surgery even though Hepworth is not officially contracted with them. I guess they had to apply for some “special authorization” and jump through some hoops to get approval, but I’d definitely be willing to explore whatever options to move up my surgery. Stephanie seemed to suggest that there would be plenty of earlier dates if I were able to self-pay.
Allison gave me a link to sign up for a discount on Brillinta and I was able to get it knocked down to $5. It’s pretty insane that our healthcare system is one that you can pay a range of $5-400 for a prescription and the only difference is printing a coupon from the manufacturer. You might also check the warehouse pharmacies. I know Costco can offer prescriptions at 75% off for some.
I think the discount card for Brilinta is only for private insurance not Medicare. So it won’t apply to me.
I’ll check Costco, but I think my best option is locating a Canadian pharmacy.
I did bite the bullet and get a one month supply of Brilinta for $340. It is absolutely insane that the manufacturer will freely hand out coupons for people to get it for $5, if you have the right insurance. If you don’t, then it’s hundreds of dollars more.
It reminds me of a few months ago when another doctor recommended nasal rinses with Budesonide. My insurance at the time didn’t pay for Budesonide so the pharmacist told me it would be $120 out of pocket. Then the next I came in they quoted me a price of $520! A third time I went to another pharmacy and they said it would cost $840 out of pocket!
So I went onto a site to print coupons for medication, and printed off one that said I could get the price down to $50 at CVS. I called CVS to verify they had it in stock. They said yes, but when I got there they told me they actually don’t have it in stock and I’d have to come back on Monday.
When I got there on Monday, they told me the coupon no longer applied! They said it would have applied on Friday, but now the cost is $180!
It’s like they just make up prices and they change every single day.
Agreed it’s so frustrating! It’s like shopping on Amazon!! You click on a link then go to another few links & when you go back to the original link, the price is higher. Anyone else had that happen?!
I am on Medicare, & the prices charged for many Rx meds are unbelievable until you’ve paid your deductible then they’re just outrageous. It seems Medicare patients should be getting equal Rx benefits to non-Medicare because most who are on Medicare have reduced incomes due to being retired.
@birdie1 - Do you have a follow-up telehealth appt with Dr. Hepworth? If not, call & either ask for a phone appt or a telehealth follow-up ASAP to talk to him about Brillinta not being helpful & to see if there’s any alternative.
It was my Neurologist who dispensed the Brilinta, waiting for appt with Fargen. Unfortunately due to sulfa allergy I am limited on meds to help intracranial pressure. So I was really hoping this would do something, she said this is the only thing to try. I even had a pharmacist do a complete review to see if there was options. Scheduled to return to work next week, which is going to be so difficult. But I will send a message regarding the medication, I was just curious if it took a while to work for some people?
We have had members who took Plavix vs Brillinta & found it took 2-3 weeks to start helping, but I’d say if you’ve taken Brillinta for close to a month without it helping relieve your symptoms, you may need to try something else. I have a hard time believing Brillinta is the only blood thinner that will be helpful for you & that there are no others that don’t contain sulfa.
Thanks for the input. I did send a message to the provider, waiting for response. Maybe i haven’t given it a chance and need to take it longer or hope for a new medication
