Prescriptions

[Adrianne]

Never imagined how hard it would be to locate the medicine prescribed.
Called every pharmacy in my area and was told it was on backorder which would take anywhere from three weeks to five months. One pharmacist told me she had never even heard of that medication. The name of the prescription is Riluzole.

 

[Nikki J]

It is not listed as being in short supply on the fda site nor on a national pharmacists' site. I have not heard anyone in any of my ALS groups reporting any issues either. Are you dealing with the national chains? Speaking to pharmacists or techs? It is usual for them not to stock it but the times I have got it locally as opposed to mail order it took about 2 business days. Wonder if they do not want to order it if they are afraid of not being paid? Do you have a mail order option with your insurance?

 

[affected]

I could be wrong, but I thought I heard people saying last week it was going to be in short supply? Is that FDA website reliably up to date Nikki? Please remember though I could be wrong, I think it must have been through the closed CALS group that I heard it.

 

[Adrianne]

Hi Nikki. Yes I called many pharmacies and each time I asked to speak to the pharmacist. Yes under the insurance we do have mail order options. The original prescription was transmitted directly to the pharmacy.
Thank you. Hope you're having a good day.

 

[Nikki J]

Good luck Adrienne keep us posted. Tillie I do not know how current the sites are but there are 5 manufacturers of generic riluzole that supply the US. Seems odd they would all have an issue. Hope not, I need a refill next week! Will you ask in your group and see what is going on? Thanks

 

[KimT]

Guess I should get a refill, too. I had a hard time with it but going to try it again. It makes me sick that we have to fight for what little they have for us.

 

[affected]

Nikki I've just asked and will update with answers, but this was what was reported

Not sure if it's been mentioned here or not but our doc told us that there is a halt in production of Rilutek/Riluzole until April 28. I called my pharmacy and sure enough warehouse was out so she had 2 bottles transferred to her to have on hand for us. Just FYI.

This was posted 2 weeks ago...

 

[Nikki J]

Thanks. Can't imagine what would knock out 5 different suppliers though.... Still hoping it is not so!

 

[lmcdaniel54]

Hi Nikki. Yes I called many pharmacies and each time I asked to speak to the pharmacist. Yes under the insurance we do have mail order options. The original prescription was transmitted directly to the pharmacy.
Thank you. Hope you're having a good day.

I have mail order option too and my pharmacy did not stock it and I had to go the mail order route. It took more than two months to get my first bottle but refills have been no problem.