Repatha

[Lynn1966]

Hi everyone, just a question is anyone else on regather? Went to collect mine today from the pharmacy and was told this has been discontinued. I was what the alternative was.

[Catmum23]

That's odd just had a letter today from my endocrinologist wanting to put me on repatha but she has to get CQC funding

[Lynn1966 in reply to Catmum23]

Yes this is very strange. Iv been on repatha for nearly 5 years. My cardiologist recommended I had this. I used to get it delivered directly to me. Two months ago I had a letter saying my own gp will be prescribing this medication. Now I’m told they are unable to get this as it’s discontinued. I’m confused now xx

[MONIREN]

I was put on this in April. It's an authority prescription here in Australia, got some yesterday. There are more and more prescription unavailable here. See what happens. Take care. Moni

[VelvetSky]

Hi Lynn it may well not be available but it might also be a money saving exercise, I’ve had to complain quite a few times when the surgery tries to switch me to something cheaper. If the consultant thinks it’s the best meds then the surgery should go along with it.

It’s surprising just how many drugs are available on line when the NHS say there is a shortage. I can get my HRT on line, paying of course, when the chemist can’t get it.

Hope you are OK

[valeriep in reply to VelvetSky]

I collected a prescription for my Repatha 2 weeks ago with no problem, although I may hear more when I have my annual review next month. It's always been prescribed for me by the lipid clinic at Hammersmith Hospital and I pick it up from their pharmacy - my GP has never been involved. I also wondered if Lynn's experience was a cost-cutting exercise if in future, it's going to come out of her GP's budget and not the hospital's, and they're trying to palm her off with a cheaper alternative. It's an expensive drug - £150 per injection - and the lipid clinic have to apply for special funding for me, reviewed every year. I've also been warned that I shouldn't become complacent and stop taking my statins or overindulging in the wrong foods (although I have FH), because if my cholesterol level rises sharply, the powers-that-be may decide it is no longer working for me and refuse to give me further funding.

[Catmum23]

Endocrinology will be prescribing it at Luton & Dunstable hospital she already told me it's not available through the GP she's the only one can prescribe it sounded like maybe some kind of trial

[JennyRx in reply to Catmum23]

It’s not a trial. It has very tight criteria and is expensive so currently only available through secondary care (eg hospital departments) I don’t think this will change in the foreseeable future

[JennyRx]

I have Repatha. It cannot be supplied by GP or local pharmacy. It has to be prescribed by hospital. I have mine sent to local Boots for collection or I can collect it from the outpatients pharmacy in the hospital. It isn’t currently available to be ordered by retail pharmacies.

[Lynn1966 in reply to JennyRx]

Up until 2 months ago it was supplied by the hospital. Then I had a letter saying my doctor surgery will be prescribing this. I had two prescriptions from the gp to my pharmacist. Now I’m told by the pharmacy it’s discontinued. Very confused x

[JennyRx in reply to Lynn1966]

I’m confused too. Sometimes when we (community and pharmacists) request a med from the wholesalers that we aren’t allowed to order then it might say discontinued or unavailable. This isn’t always true Ask your pharmacist to ring the wholesaler. It’s likely they will be told it’s restricted to secondary care. I have not heard anything about it now being switched to primary care. Meanwhile phone the secretary of your consultant who first prescribed it and get some answers.

[JennyRx in reply to JennyRx]

I’ve done a bit of research and it’s tricky to unpack the info. However it is clear that initiation and CONTINUATION must be done by a lipidologist not a GP.

[Lynn1966 in reply to JennyRx]

For two months I got my prescription for repatha from my doctor and it was ready to be collected from boots chemists. Hopefully I can get some answers soon x

[Lynn1966]

It was also delivered to me as it needed to put straight into the fridge x

[lizzieloo2]

My husband takes Repatha injections 140mg fortnightly and this was prescribed by his lipidologist following a heart attack caused by cholesterol. He cannot tolerate statins. He has been on it for about a year now and has always had it delivered by Sciensus who also provide the sharps bin, plasters, wipes and cotton wool. He uses an app to arrange what he wants and when he wants delivery. As you say, it needs to be kept between 2 and 8 degrees so needs to go straight into the fridge. It must be a lottery as to where you live

[Lynn1966 in reply to lizzieloo2]

Mine was prescribed also from the lipids clinic, for the same reasons as your husband. It’s only the last couple of months that the doctor has prescribed it. I really don’t understand what’s happening. I’ll be contacting my doctor and the lipid clinic tomorrow x

[Lynn1966 in reply to Lynn1966]

I have messaged Sciensus to see if they can explain why my GP took over. I always understood that GPS don’t prescribe this medication. Fingers crossed that they can advise me x

[JennyRx in reply to Lynn1966]

Have you actually been able to get any Repatha from a GP prescription at any point? It’s definitely not discontinued

[Lynn1966 in reply to JennyRx]

Yes I had 2 months of repatha from my doctor.. Before that I always got it from Sciensus. Iv been on repatha for almost 5 yrs. x

[JennyRx in reply to Lynn1966]

So they issued prescriptions and the pharmacy supplied it? Interesting but doesn’t seem to fit with current guidelines. I’m not sure how Sciensus works though

[Lynn1966 in reply to JennyRx]

Yes I did think it was strange at the time . I received a letter basically saying that my GP will be prescribing Repatha. I always understood that only the lipid clinic could prescribe it xx

[JennyRx in reply to Lynn1966]

I think you need to get in touch with the secretary for the consultant who originally prescribed it. Usually lipidologist although in some hospitals it’s the cardiologist who initiates it

[Lynn1966 in reply to JennyRx]

This was the reply I received from my doctor surgery today.

Information

[JennyRx in reply to Lynn1966]

I’ve just read a Guardian article from April 23 about an investigation into Sciensus as there seems to be huge problems with them failing to deliver important meds on time. Maybe your lipid clinic decided to pull out of the arrangement with them as a result

My lipidologist gives me 6 months supply at a time via the hospital outpatient department. Because it’s run by Boots I have it delivered to another Boots nearer to me. I just phone the lipid secretary every 6 months and reorder

[JennyRx in reply to Lynn1966]

I get my sharps bin from the local council. I just book a pick up and new bin and they come and collect it and leave a new one.

[wischo]

This is available in Ireland under the High Tech Scheme which because of its price is assessed as worthwhile or not to a patient.