Entresto - supply problems? - British Heart Fou...

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Entresto - supply problems?

mariancolyer
mariancolyer

Hi,

I have dilated cardiomyopathy and have been taking Entresto for nearly a year. I realise this is a relatively new (and expensive) drug but it really has done wonders for me and I am leading a normal life thanks to it.

My question is -does anyone else have problems obtaining it from the pharmacies? On my repeat prescription each month I have had problems at least three out of six months. As I am now dependent upon this drug, it is quite stressful wondering if I will get the supply I need each month.

I know it's been called a "wonder" drug but now query whether it's limit in supply is accidental or deliberate?

Thanks!

Marian Colyer

7 Replies
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Hi Marian, I have had no problems getting Entresto but there was a thread on here a few days ago about supply problems. Like you, it has made a huge difference to my symptoms and lifestyle and I also consider it to be a wonder drug

mariancolyer
mariancolyer
in reply to CRTD

Absolutely! I feel so much better but worry about supply problems.

Hidden
Hidden

Hi I am also on entresto and had a huge problem with boots getting it, I even had to go on holiday without enough tablets even though its a repeat prescription, on my return a week later still no joy, I really was panicking by then, I spoke to my GP they said boots are a nightmare! I immediately changed to an independent chemist, well pharmacy, I live in Scotland I don't know if they are national, I walked in with an ad hoc script explaining how I new they could be difficult to get blah blah, the girl just looked at me, a bit mystified as to why, produced my meds and I have not had any problems since then , I am so relieved now that the stress of running out has gone, I am so disappointed in a big company like boots could cause this upset

mariancolyer
mariancolyer
in reply to Hidden

Hi there,

I phone Novartis (who make Entresto) today and they were extremely helpful telling me that the drugs are sent to a wholesaler who in turn delivers the orders to the different pharmacies. They said there are no production problems. However, my pharmacy still insists there is a supply problem. I now have to speak to my GP to see if I can get it (guaranteed) via the local hospital. This was not the problem of Novartis but it sounds as though the drug is being "rationed"!

Oh yes, I do have Entresto. I had to double check, because on my repeat prescription. It has it down as Sacubitril/valsartan.

I also do find that my pharmacy has to order these in for me. Of which can take 24 to 48 hours to come in. But lucky, the way that my repeat prescription works. I always have about 2 weeks supply, incase there is a major delay in getting it.

And I think one of the reasons why some pharmacies don't keep it in. Is the cost of the drug, and because it is very specialist drug. A lot of pharmacies, might not have anybody on the books. That needs to take it, so it would take up space. Where another drug can be stored.

But it does make me wonder, if they have got somebody on the books like me. Who get there repeat prescriptions from them. That they would order some in, a couple of days before they know. That the prescription is due in, so that they have got it on hand. With the rest of my drugs. That I require.

My pharmacist explained that they are all rationed for Entresto as it’s an expensive drug and liable to fall into the hands of online pharmacies who sell worldwide. Because of this they only release Entresto on production of a prescription. My pharmacy faxes this to the supplier and receives it a couple of days later. Because of this I always order from my GP in really good time.

Thanks for that; I always worry I might not be able to get it on time so now have a week's supply in hand now just in case.

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