Twitter Q&A on the AAI Shortage with Lynne Regent

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As many will know, there is rising concern over the national shortage of Adrenaline Auto-Injectors – the devices best known by their brand names, such as EpiPen, Emerade and Jext, which are the first and only port of call in the event of a serious anaphylactic reaction. Many families are finding it impossible to fulfil their prescriptions. On @allergyhour over on Twitter last week we put some questions to chief executive of the Anaphylaxis Campaign, Lynne Regent. Here are her responses below:

Q: How long before expiry should we request more auto-injectors from our GP?
Lynne: One month

Q: Aside from those EpiPens granted an increased four month usage beyond their expiry dates, in an emergency how long are expired EpiPens OK before we can no longer use them?
Lynne:
The activity of Adrenaline Auto-Injectors does reduce after the expiry date, however they are safe to use beyond expiry unless the liquid is discoloured and contains particles – then it should be discarded. If in doubt please ask your pharmacy to check with you.

Q: Schools are refusing out of date pens. How can we work to allow schools to use/keep expired EpiPens until the supply issues are resolved?
Lynne:
Schools may require a letter from a GP or a pharmacy to explain the circumstances. If you have any difficulties please contact our helpline on 01252 542 029.

Q: My chemist has no pens in stock. What should I do?
Lynne:
You may need to revisit your GP to ask if they can prescribe an alternative medication, and call the customer service lines for the pharmaceutical companies. For full details see our statement.

Q: The situation seems to be getting worse before it gets better. What is the time frame for all unfulfilled prescriptions to be filled and full stock to be returned?
Lynne: We are unsure when stock levels will return to normal. We will continue to be in contact with the Department of Health, the Medicines and Healthcare products Regulatory Agency [MHRA] and the pharmaceutical industry for the most up-to-date information.

Q: We know Brexit may further complicate things. What are the contingency plans?
Lynne: We can’t answer this question on Twitter – it is a complex question that requires a wide-ranging debate.

Q: Will the approval of a new generic EpiPen in the US ease the situation over here? Will it be available in the UK?
Lynne: To our knowledge no requests have been made to get another adrenaline auto injector licensed in the UK.

Q: What should people who have no pens, and can’t get any from their pharmacist, do?
Lynne: Call the customer service lines for the pharmaceutical companies – full details on our statement.

Q: What is the Department of Health doing to work with you at the Anaphylaxis Campaign?
Lynne: We have been in direct contact regarding the availability of Adrenaline Auto-Injectors in the UK and they are working with the Medicines and Healthcare products Regulatory Agency and the pharmaceutical industry to manage the situation.

Q: Why are some batches of EpiPen OK to have their expiry dates extended where others are not?
Lynne: Mylan UK have obtained acceptance from the Medicines and Healthcare products Regulatory Agency to extend the use of specific lot numbers following rigorous testing.

Join @allergyhour every Thursday, 8.30-9.30pm, for the chance to share recipes, thoughts and info about living and coping with allergies. 

 

 

The Allergy Interview – Gemma Morris

SHE hit the headlines this month after it was revealed she suffered a massive anaphylactic shock while on a skiing holiday in Austria. Now nut allergic Sky News presenter Gemma Morris, 27, tells yesnobananas about her childhood milk and banana ‘cure’, dodgy cosmetics and how to handle eating out…

“There was no pivotal moment when I found out I had a nut allergy. I’ve had bad reactions to nuts from as far back as my memory serves me. As a small child, I used to tell my mother I was experiencing my “nut feeling”. She knew that meant my mouth was becoming itchy and irritated, and I was starting to feel a lot of discomfort.

The usual remedy was to give me bland, soft foods to take the taste away and distract from the feeling. I would have to stuff my mouth with bits of banana or drink a big glass of soya milk (not cow’s milk, it used to give me eczema apparently – an intolerance I have grown out of nowadays).

My mum told our GP about the “nut feeling” episodes. He was apparently pretty unconcerned, and simply told her not to give me nuts!?

I’m not allergic to all nuts. I’m fine with almonds (I love them, eat loads of them) and skin prick testing has twice revealed I’m fine with peanuts too. But I’ve never had the courage to eat a peanut to find out if it’s true!

I didn’t carry an Epipen until I was about 15. The school had no idea about my nut allergy. It was a large school and it felt easier just to keep my Epipens on me and take care of myself.

Many years earlier, at junior school, I remember having an allergic reaction to a chocolate that a friend had smuggled into our cloakroom at playtime. I ended up in the school office, sitting on the sofa where they made all the sick kids sit, just ‘waiting it out’ until the reaction eased off. It was horrible.

People just didn’t know what was happening to me. I didn’t even understand it myself. This was the very early 1990s; I can only assume allergies were less well known in those days.

My friends are very supportive. They’re used to me checking with waiting staff in every restaurant we go to.

When I was younger, there wasn’t much ‘support’ friends could offer me, really. I had my Epipens, my antihistamines, I just took care of myself when out.

I did get anxious about some nights out during those teenage years when alcohol begins to play a role. It sounds a tad over-the-top, but I used to fear that if my friends were drunk, would they still be able to ring an ambulance if I keeled over? Would they be sober enough to notice me choking on the floor trying to grab my Epipen? You can imagine the near-death scenarios I used to play out in my head before a night out! I hasten to add none of it ever actually happened.

I’ve had loads of other reactions while eating out. Among the worst and most memorable were eating a supposedly nut free salad in a café in Malta which turned out to be dressed in pesto! I had a terrible time during the following 48 hours. And eating a basic pasta dish at a restaurant in Wimbledon which I reacted to immediately. The restaurant swore blind there were no nuts in it, but I was keeling over and had to be driven home ASAP.

The nut allergy came up on the first date with my boyfriend because we were in a restaurant and I needed to check my chosen meal was nut-free. Unless I am about to eat something unfamiliar there’s no need to declare my allergy.

I eat out all the time. I just check with the waiting staff whenever I order. I find mentioning the words “severe and fatal allergy” tends to get the kitchen staff to take it seriously.

Actually, I found a great tapas restaurant at the weekend near where I live in Richmond where the waiter told me they do not use nuts in ANY of their cooking – Don Fernando. It was great to have such peace of mind when eating my dinner!

My failsafe food to order is some sort of chicken or fish salad – with dressing on the side (in case it’s a nutty pesto dressing).

When it comes to prepackaged food I’d just recommend checking the ingredients list – always.

With the ‘may contain traces of nuts’ thing it depends what the food is. If it’s something like a pot of hummus then, yes, I do eat it. If it’s a seeded bread, then no – I usually wouldn’t eat it.

To a newly diagnosed nut allergic, I would say: relax, just be careful and always carry antihistamines and an Epipen.

To a parent of a nut allergic child, I would say an even bigger RELAX – your fretting will teach your child to panic about his or her allergy. Growing up is scary enough as it is.

When you are with your child and they begin to have a reaction, please stay very, very calm and gently take the necessary measures. Teach them not to be embarrassed about their dietary needs and to have confidence in spitting something out if it doesn’t feel right!

What I’d like to see is better, bigger, clearer indications on all products containing nut derivatives. Not just food, but cosmetics too. I realised this morning that a new foundation I was about to use contained walnut extract. I wouldn’t have known had I not been reading a leaflet about it.