Rilutek on back order.

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Vincent

Senior member
Joined
Dec 30, 2013
Messages
999
Reason
PALS
Diagnosis
08/2014
Country
CA
State
ON
City
Barrie
I just went to the pharmacy and was told Rilutek was on back order. Both name brand and generic. I was just wondering if this was a local thing, Ontario wide, Canada wide or a North American thing. I've never had issues in the past 6 years I've been taking it. Anybody else having the same issues?
Vincent
 
I found this Drug Shortage Report for RILUTEK

it isn’t listed as being a problem in the US On our list. I last filled a month ago without an issue ( I get three months at a time)

there are several manufacturers that supply the US. In Canada do you only get sanofi?
 
I believe so.
Vincent
 
It was on back order for several months about 1 1/2 years ago with Express Scripts , an on line ordering pharmacy. When I called they said there was a supply problem because there was only one manufacturer , an Indian company. Then I haven’t had a problem getting it from them for the past year.
 
I have had at least 3 different manufacturers for my riluzole. including a round pill ( yes I checked that it was riluzole). Sometimes companies stop making it but also patients get told there is only one manufacturer and the truth is they have only one supplier.

I currently have apotex which says it makes riluzole for Canada Vincent

mary may I ask if you get your riluzole directly from express scripts? When I had them they farmed me out to a specialty pharmacy which was a nightmare! And if you take nuedexta what about that? I had a nasty specialty pharmacy experience and have avoided express scripts ever since
 
Nikki, that’s interesting! I do get my Riluzole through a mail order prescription directly from Express Scripts- Tricare. Perhaps that’s different than your type of Express Scripts. But my prescription is currently coming with no problems. Mary
 
Hmm. It was back in 2015 so maybe they changed. I have caremark now

thanks
 
This is one reason why I went off it. The round version used when the oval was back ordered gave me hives, and I had to pay OOP to get the oval one since insurance had covered the round. When the backorder happened again I said screw it, I've made it this far. And my skin irritation has dropped significantly.
 
Express Scripts, OptumRx and CVS Caremark are the three largest pharmacy benefit managers (PBMs) in the US, and together account for most of the mail order market through their health plan and self-insured employer customers. Each has different brand and generic manufacturer contracts, and each has multiple networks of mail order, specialty and retail pharmacies, that it configures based on the client. Likewise, pharmacies have contracts with multiple wholesalers. So for example whether or not riluzole gets turfed out to specialty pharmacy depends on the combination of PBM and plan.

Manufacturers pay millions of dollars in rebates (volume discounts, if you will) to the PBMs. Some contracts are more exclusive than others.

In the States, if you there is a shortage of something you need, options include calling around to see if a pharmacy in your plan (even if not the one you normally use) has access to stock, paying cash to a non-network pharmacy that has stock [then submitting the expense to your plan with a med necessity letter], and appealing to your health plan to reimburse a non-contracted drug, e.g. in this case, a newer formulation of riluzole that is not yet on formulary, with an appropriate rx. Of course, if there are multiple drugs in a class, and one is in shortage status, there is often another drug in the class that can be used with an rx from your doc.
 
I hate when I'm used to a color and shape, then it changes. I have good reason. I've discovered errors in meds three times at three different pharmacies back before ALS. I recently went from SilverScript to WellCare after plugging all my drugs into a comparison cost table and discovering I can lower my premium AND my co-pays if I leave Walgreens and go to CVS. Today, I filled my first prescription at CVS. 360 Valium (generic) for $9 as opposed to $60 at Walgreens. Walgreens is 100 yards from here and CVS about a mile. Both have drive-thru and both deliver.
 
I don't use an online pharmacy, I get meds at the grocery store pharmacy. The grocery store is owned by the same parent company as the largest drug retailer in Canada. As i said, I have been on this medication for 6 years with no issues. I don't take Nudexa so I have no issues with that.
Vincent
 
I had my last Riluzole filled in Nova Scotia (90 days) on Dec 19, 2019, and my pharmacist did not mention anything, but must keep mindful that perhaps it will not be available when it comes up for refill. My insurance company shows it is available from 3 companies, lowest price for 30 days, Mylan-Riluzole for $360.69, Apo-Riluzole 50mg $581.78. And brand name Rilutek for $1,140.31
 
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