Anyone been prescribed the new Jext (replacing Epipen?)

[ShredMeJillianIWantToBeNatalie]

Just wondered - put a repeat prescription in for ds3 (aged 3 - tree nut allergy) and the surgery has said Epipen is being replaced by Jext. Does anyone know if they are the same size, as I wanted to know if they will fit the Yellow Cross bags for ds3 at nursery?

Also, the surgery has said they will only prescribe one. We have 4 Epipens - 2 given at the hospital when ds3 went into anaphylactic shock last year, and the consultant then advised us to get 2 more on prescription. Is this due to it being a better product (the reason the consultant advised 4 was that 2 doses could be needed and/or 1 Epipen could fail, plus he said 2 to be kept on the person and 2 at home at all times)?

Pretty sure that you still need 4 Jext pens for exactly the same reason you were prescribed 4 epi-pens. Sounds like the surgery trying to cut costs. If the surgery won't listen, get in contact with the consultant, check with them and ask them to contact your GP to make sure they prescribe the right number.

I am just about to request a repeat prescription for my DS and am looking forward to the Jext pens as I believe they have longer expiry dates and are not affected by temperature (always a nightmare trying to keep the epi-pens from getting too cold or hot). I'm pretty sure they're the same size, the trainer pen is so I'm assuming the real ones are too. Have you got a Jext trainer pen? You can request a free one from their website here - they call it a simulator pen and you can tick the box to say you want one when registering for a expiry date alerts.

Thanks freefrommum that's really helpful.

Yup DD has them now, they are the same size, and have much longer expiry dates. She still has 2 at home, 2 at nursery. Also got the trainer pen, works exactly the same as the Epipen.

I was precribed Jext to replace epipen but my pharmacist noted it has a sulphite as a preservative in it which I am allergic to so has changed back to epipens.
That is why they have a longer expiry date and are cheaper for NHS

Oh, interesting. No idea if DD2 has a problem with sulphites.

jaffa

i didn't realise that about the sulphite, thanks for passing this info on

A quick update ...... DH made an appointment to discuss this issue with our GP. He will only prescribe two Jext (which counts as one dose) because it's not the place of the NHS to make allowances for parent/nursery wishes/policy. For which I suggest you can read "cost".

DH asked if we could buy an extra dose on a private prescription (for which we would have to pay the GP, pay for the items, and pay a chemist fee). Answer: no. PCT policy does not permit a GP to privately prescribe a medicine which is available on the NHS. He has no discretion in this matter as it is a PCT policy. He can only privately prescribe medicines not available on the NHS - he gave the example of Viagra.

When pushed to provide reasons he stated (1) an ambulance would be with ds3 within 5 minutes in the event of anaphylactic shock (shame the last one took an hour then - and that the ambulance crew was unaware that he was about to go into cardiac arrest because their blood pressure monitor was broken); (2) it isn't fair for those who can afford a private prescription to buy better care than those who can't. In which case he'd better have a word with himself about the patients with private medical insurance routinely referred by NHS GPs (including him) for private treatment.

We will be sending a letter to the PCT tomorrow to request clarification of this issue. Having seen the wording that says a GP may not privately prescribe medicines available on the NHS, it is clear from the wording and the context that this is designed to protect patients by preventing a GP from profiteering ie by offering private prescriptions for a fee when the same medicine is available on the NHS.

Will keep this updated.

On the preservative issue, the patient information leaflet states that Jext contains sodium metabisulphite "which may rarely cause severe allergic reactions." Also the Jext we've been given has an expiry date of17 months which is not the 24 months we were told, and is not much more than the 14 months expiry date on our epipens.

We have 8 epi-pens! This is because our childcare situation means that this is the only way we can ensure that DS has 2 with him at all times (complicated routine involving me dropping off at childminder, then childminder dropping to school then DH picking up from school). I would be very dubious about a PCT policy that states you can only have 2 and agree that you should definitely contact Anaphylaxis Campaign. It might not be the NHS's fault that school/nursery requires 2 to be kept there at all times but it's not your child's fault either! I would still suggest getting consultant involved and allergy nurse if you have one.

Thank you very much, great suggestions. I've sent a copy of the letter to the PCT by email to the AC; I can't believe our situation is unique. The thing is, this kind of situation is a tragedy waiting to happen - but I remember when ds3 had his anaphylaxis someone on this board told me that no-one will ever care as much as you do about your child's health. Wise wise words.

Oh and freefrommum the PCT policy apparently says one, not two! The only reason our GP relented and prescribed two was because the consultant had said in writing that one dose potentially = two pens; which is exactly what the Jext patient information leaflet says. So on the PCT's scenario, if one fails completely or fails to treat the reaction sufficiently ..... tough luck.

Have just replaced ds' epipens yesterday. expiry date on new ones dec20212

Lasst time he saw allergy consultant at soton he said the policy now was only one pen needed to be prescribed as evidence showed that the 2nd was never needed .
When I told the school this they said it was their policy to have 2 , so I asked put in request for 2 and got them no questions asked.

A very quick update: wrote to the PCT on the basis that our GP had said that it was their policy. They said they had this week adopted guidance that two pens should generally be prescribed, but that they would never limit the numbers a GP was permitted to prescribe and our GP was therefore not correct in saying he was not allowed to prescribe more.

GP admitted that the consultant had advised four and that on that basis he was prepared to go with this. So all this took two appointments and a number of letters and emails to sort.

Anaphylaxis Campaign were very helpful, I must ring tomorrow and update them.

Finally - we took the prescription for Jext to our local chemist who said "we are totally out of stock, I'll give you epipens instead." Having gone through huge stress to get Jext, no way was I accepting a couple of no doubt soon to expire epipens! (will they still be producing them?) - chemist was adamant that no one else would be able to get Jext for us but Boots just down the road ordered them in and got them that afternoon.

Great news :)

hi, epipen contains sulphite too