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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To be horrified at lack of addrenaline

56 replies

rabbitheadlights · 08/09/2019 00:21

So my DP recently diagnosed with as yet unknown trigger anaphylaxis and I have spent 2 days calling pharmacies to find that nowhere in the whole of Manchester has stock of adrenaline pens!! So right now he's at work (chef) possibly the worst environment he could be in, unprotected and highly exposed and I'm a nervous wreck at a loss as what to do. There are 3 distributors of adrenaline pens in the UK and all are experiencing manufacturing difficulties. What do I do? Why? And what the actual f##k this is a life saving drug and even pharmacists can't access it? What's causing this? Is it just a thing? Is it Brexit? Is it something else? I'm literally sat here praying he comes home safe and will do the same tomorrow

OP posts:
Rachelover40 · 08/09/2019 01:20

You can buy them online, have a look, there are plenty of places selling and they despatch quickly.

In the meantime make sure he takes good antihistamines such as Benadryl or Piriton at least a couple of times a day.

Annutumarien · 08/09/2019 01:39

I'm unfortunately in a similar position as your husband, I suffered from anaphylactic shock during my sons c-section birth from an unknown drug allergy. That was in early October 2018, it took ages to figure out which of the several drugs used during the surgery I reacted to. Upon finding out the drug I'm allergic to is also a chemical that's also used in multiple cosmetic products, skincare, oral hygiene items and household cleaners, I tried to get an adrenaline pen just in case and was told by my GP that there's simply none available. I'm still waiting for a 2nd appointment with the allergy clinic to test the other drugs used in the surgery incase of further undetected allergies, that appointment is this month, 11 months after my reaction.

Your best bet is to privately buy one through a registered online pharmacy, they often have them in stock, they can be expensive (£98 for 2) especially seeing as it's recommended to have two so you can administer the 2nd 5 minutes after the first if it doesn't ease symptoms, other than that you may just have to keep pressing with the doctors until you get one.

I've just checked online and they are available in stock to purchase online in legally registered UK pharmacies but I don't know if I'm allowed to post links on here, a quick Google search will bring up what you need.

Sorry for the long post, I hope this helps you.

Original poster
rabbitheadlights · 08/09/2019 02:08

I can get them online for 49.99 each however we are a family with only 1 working parent( I currently have several pulmonary emboli) all be it 90 hrs a week we have 7 children and £100 is a lot of money but far less than my DP is worth xx

OP posts:
RubbingHimSourly · 08/09/2019 02:12

My sister's been advised to stockpile epilepsy medication due to Brexit. She's had a nightmare over it all. At one point our hospital had to get essential meds shipped in via helicopter at a cost of thousands

Original poster
rabbitheadlights · 08/09/2019 02:16

Penguinpop I will look into this thank you I spent 7 hrs on the phone calling UK pharmacies yesterday!!

OP posts:
Original poster
rabbitheadlights · 08/09/2019 02:18

Our main problem is not knowing the trigger, being a chef he's had several severe reactions over a month if you know what to avoid it's easier

OP posts:
drsausage · 08/09/2019 02:51

Odd - we've had no problem getting adrenaline pens in the US. DD and I get Auvi-Qs at no cost direct from the company, and I believe there's at least two generics you can get now.

Not that it helps you OP, but it's weird that this is such a problem in the UK.

UndomesticHousewife · 08/09/2019 03:10

This has been going on for a while now, we couldn't get any for dd. They did come back into stock and we were given one but we had the out of date ones and would have used those if necessary.
Hope you get hold of one soon

Sunflowers211 · 08/09/2019 03:28

Ring 111 who will organise for you to collect one.

Sunflowers211 · 08/09/2019 03:31

Also he should not be at work until a full screening has been done to find the exact cause of his allergic reaction.

knowsmorethansnow · 08/09/2019 10:03

This has been a problem for the last two years. I have been trying for over a month to get adrenaline pens for my child because theirs are nearly out of date. I have had the same problem for the last two years. I've been told it's because drug companies are selling them out of the UK because they can get more for them. This with pharmacies only being able to order in so many a month makes it really hard to get hold of them.

Solasum · 08/09/2019 10:06

We got a letter saying you can safely use the pens for a while beyond their expiry date. Not ideal I know.

megletthesecond · 08/09/2019 10:12

It's been going on for at least 18 months.

I put in a prescriptions for 2 adrenaline pens for DS in the first week of July. The pharmacist finally got hold of two this week.

SimonJT · 08/09/2019 10:18

It’s been going on for a while, do you know anyone going abroad? I have a friend who travels a lot and he buys them direct from pharmacies for me, most places will accept a british prescription.

It isn’t brexit, there is a worldwide problem, partly because selling to the US market means getting $600 for each one.

If your partner is at work they should have an emergency pen he can use, surely this was covered when they carried out a risk assessment before he returned to work?

I have however been given a very hefty stock of insulin as there are genuine supply concerns.

knowsmorethansnow · 08/09/2019 14:55

I was told it was safe to use past it's date as long as the liquid is clear.

summersherewishiwasnt · 08/09/2019 15:02

My child has carried an epipen for 19 years and has always had difficulty getting a new one. They have an expiration date and so chemists are reluctant to stock them. You would be better to order them in advance.

Butterflycookie · 08/09/2019 15:12

Don’t know why people are saying to call 111. 111 won’t have information of which pharmacies have certain medications in stock. They can send a repeat prescription to a pharmacist for you to collect but they won’t know if that pharmacy will have it in stock or not. You will have to keep trying every pharmacy.

joystir59 · 08/09/2019 15:17

How about ringing 111 and seeing if they can source some?

joystir59 · 08/09/2019 15:18

I haven't been able to order a spare asthma inhaler for months, the prescriptions are only for 1 whereas before I could get two at a time and always have a spare. Brexit.

MarigoldGlove · 08/09/2019 15:23

I got two jext pens at the first place I tried last week.

ProfessorSlocombe · 08/09/2019 15:49

It may not be because of Brexit, but Brexit certainly is exacerbating the situation and is clearly a factor in addition to all else that's going on.

nobodyimportant · 08/09/2019 15:52

It's been going on for ages. I can't get hold of any for my son either. He still has his previous ones and they can be used past the expiry for a while, just maybe less effective. Still not good though. Pharmacy is trying to get hold of them for me.

CrapTVAddict · 08/09/2019 16:12

What part of Manchester are you? You can pm if you want as I had this trouble but then pharmacies round here started stocking up Stockport area

Idontwanttotalk · 08/09/2019 16:23

It has nothing to do with Brexit. My brother has been struggling to get epi-pens for a couple of years. As a result Jext pens are now in short supply too.

What I read was that the original company who made them was sold and the buyer saw additional markets for them and started advertising them to schools and large organisations. Schools etc in the US started buying them 'just in case' someone went into anaphlaxis on their territory and demand was phenomenal.

It used to cost 60 US dollars to manufacture 2, the selling price of which was 110 dollars. They then put the sales price up to 600 dollars.

Combined with the surge for them caused by the mass ad campaign, the manufacturer could not and still cannot keep up with demand.

GPs are suggesting you use them up to a couple of months beyond expiry date and are also only prescribing one instead of two.

Pfizer are expecting the shortages to carry on for some time despite their best efforts. They are fairly complicated technical processes involved in putting the adrenaline into the injectable pen and it just takes time. Demand just outstrips supply.

I think people who have been known to suffer anaphylaxis should be provided with them in preference to organisations and schools having them 'just in case' someone with an undiagnosed allergy goes into anaphylaxis.

drsausage · 08/09/2019 16:25

It isn’t brexit, there is a worldwide problem, partly because selling to the US market means getting $600 for each one.

This is no longer the case. Mylan can't sell epipens for $600 any more because there are so many competitors on the market. Most insurance companies now buy the generics instead, which are much cheaper if not free.

I last bought a pair of Mylan Epipens just under 3 years ago, shortly after the Congressional investigation, and even then they had dropped from $600 to $350, and that was before there were any competitors on the market.