Onset of anaphylaxis unknown allergen

[Aurorie11]

Looking for advice having spent 5 hours in A&E today.

Background, early 50s F minor allergy issues hay-fever for 40 yrs plus, bit of a reaction to a wasp sting couple of years ago but dealt with at home with antihistamines.

Yesterday woke with puffy face and neck both sides, no issues breathing etc. Went to pharmacy and given alternative antihistamines.

This morning at 5.30 eyes didn't feel right when looked in mirror welts under them took new antihistamine then. Made a cup of tea antihistamine had no impact and rash spread to neck/upper chest and upper back. Phoned 111 for advice who wanted to send an ambulance but I declined and drive myself to A&E.

Had adrenaline and IV antihistamines and hydrocortisone. Bloods taken, no issues there.

Discharged with 5 days of steroids and 3 days of antihistamines.

No idea what triggered this, racking brain to think of anything different to eat or new products used, but struggling to identify anything.

Doc at A&E recommended getting appointment with allergy clinic specialist, phoned GP and got GP appointment in about two weeks to ask for a referral.

Looking for advice/experiences please

@thingymaboob

You need to identify whether this event was actually anaphylaxis or not. I'm not convinced because of the development time, despite the other symptoms you described. Anaphylaxis is characterised by a rapid onset, as well as what you've described. The hospital should have taken a blood test called a "mast cell tryptase" - straight away then repeated the test around 90 minutes later and compared the two. This blood test will definitively tell you whether your reaction was anaphylaxis. I'm a paramedic by the way.

You must know that anaphylaxis can have a delayed onset?

Had similar. Dr didn't know what it was caused by as different situations each time so no pattern. Had hives, swollen lips and welts. Was referred and told it was spontaneous urticaria. They told me it may occur randomly throughout life. Haven't had it for a couple of years now.

I had very similar a few years ago. About a week of localised itching (armpit) and then overnight I developed a rash and my entire body, head and face swelled right up. My fingers were so swollen I couldn't bend them and my face was massive and puffy.

Took myself off to a walk in clinic where the doctor looked somewhat alarmed and made me ingest an entire pack of steroids and wait 45 minutes for the swelling to go down. He was concerned in case my throat started swelling (it didn't). I was then on steroids for a week until I went back to normal.

Got a referral to allergy clinic since I had no clue what had caused it. Got diagnosed as idiopathic urticaria. Consultant didn't seem especially worried. I have no Epi-pen but do carry steroids in case it happens again.

@SparklingLime it is extremely rare for that to happen. The onset may be delayed but once the reaction starts occurring, the patient deteriorates rapidly.
Here is a slide from the resuscitation council regarding reaction times.

@Shebangshebong @DappledOliveGroves
Thank you for your reassuring experiences.
Target for tomorrow to get a GP appointment it looks like some local private hospitals do private testing, might go down that route for a relatively low cost (seems to be under £500) but need GP referral. Cost would be worth it to understand more particularly as due to start new job next month, waiting on formal offer

@thingymaboob

You need to identify whether this event was actually anaphylaxis or not. I'm not convinced because of the development time, despite the other symptoms you described. Anaphylaxis is characterised by a rapid onset, as well as what you've described. The hospital should have taken a blood test called a "mast cell tryptase" - straight away then repeated the test around 90 minutes later and compared the two. This blood test will definitively tell you whether your reaction was anaphylaxis. I'm a paramedic by the way.

This is not true. Both my DC have had delayed onset anaphylaxis. DD after a food challenge in hospital had an anaphylactic reaction after she had been given the all clear and we went back and they administered the epipen. This was several hours after the food challenge had ended.

We had a paramedic once tell us it wasn't anaphylaxis and was just going to leave DS at home and when we told the doctor she was furious. DS was monitored all through the night and his blood pressure dropped in the middle of the night and they had to administer more adrenaline as he was having a biphasic reaction. Paramedic didn't have the first clue about the many presentations of anaphylaxis.

Have never ever had a blood test at hospital to determine anaphylaxis, and have been there many many times after anaphylactic reactions.

@thingymaboob mast cell tryptase doesn’t always give a definitive diagnosis - it can be normal in anaphylaxis (it’s uncommon but certainly well described & iirc it’s more likely to be unhelpful in less dramatic reactions).

I’m currently experiencing bouts of this too

I’m a pen carrier and as certain as I can be I’ve not eaten any of my trigger foods

I’ve been upped on my fexofenadine and given steroid cream while I wait for a referral to dermatology as my GP also doesn’t think it’s to do with my known allergies

Agree, @Rainbowshit. Delayed onset and acute deterioration hours later are relatively rare, but as you say they happen. Awareness is key.

Hope you are feeling a bit better x I had an allergic reaction a few years back - swollen everywhere. Put that down to a vicks plug in being used in my sons room when a baby when he had a cold and was congested. Never used them since. Have you had any fragrance things in your house? Might be worth checking. Also had a different occasion feb 2020 - came back from centrparcs with a rash all over torso and swelling lips etc. That time the doctor thought was a reaction to a virus. Both times took benadryl, used aveeno body wash (as unscented), and had to wait for it to die down. Not nice at all, and quite scary if throat starts to swell

Dr thought my second reaction was Pityriasis rosea as had a mother patch that appeared first. But that was a more gradual reaction and development over a day or 2.

@Topbird29 thank you, was a bit spaced out after first dose of steroids this morning but feeling more normal now. No new scented things I can think of.
Thank you for tip about aveeno. Fortunately didn't impact on throat. Got GP call this afternoon to ask for referral

Aurorie did the hospital say it was anaphylaxis? If it was they should not have discharged you without epipens. Do chase this up with your GP

@yarnivore discharge letter says
Anaphylaxis (suspected diagnosis)
Please follow up with allergy specialist
Will raise with GP later

Have you recently got any new bedding? On holiday a few years ago I kept waking up with a really sore throat and puffy face which came down with antihistamine. Eventually realised I was allergic to the memory foam pillow so swapped it for a normal one and it stopped happening.

@rewardacrosstrack changed bed and bedding about 5 months ago no change to washing detergent

Here you go, around page 10 of the guidelines:

www.nice.org.uk/guidance/cg134/evidence/anaphylaxis-full-guideline-pdf-184946941

1.1.10 After emergency treatment for suspected anaphylaxis, offer people (or, as appropriate, their parent and/or carer) an appropriate adrenaline injector as an interim measure before the specialist allergy service appointment.

@Policyschmolicy

My dad has something similar. Periods of extreme facial swelling (angioedema) with no known/obvious trigger. He carries an epipen and has a diagnosis of ‘acute chemical sensitivity’ which seems to mean things like washing powder, soaps, perfumes

I had exactly this for a couple of years in my late teens. Roughly once a month my whole face would swell up to the point where I couldn’t see out of my eyes. I spent a few days in hospital the first time and then just took antihistamines. Never got to the bottom of it and one day it just stopped and never came back.

Have you had covid recently or the booster?on my last visit to the hairdressers I was given a patch test despite not having one in years as they said a lot of people are having reactions to hair dyes after covid / vaccines. I know you said you couldn’t think of a cause but just a thought.

@Turquoisesea had 3rd at the end of October
Thank you @Yarnivore

I had a severe allergic reaction 15 years ago- whole face swelled up as if I had taken poly juice in Harry Potter- ended up in A&E with crash team- utterly terrifying. I had lots of allergy tests andante epipen. They never found out what caused it. I was advised not to have ibuprofen as had that the night before. I have often wondered if it was something in my garden as I had been making door wreaths. The doctors put it down to 'a virus'. It's never happened since.

@goldenlilliesdaffodillies that sounds terrifying, glad there’s been no reoccurrence

@Yarnivore just had call with GP, first thing they said was you need an epi-pen. DH off to collect now, his reaction oh god! he hates anything to do with needles.
Appointment made with practice nurse to be shown on how to use.
Waiting on call back from private docs secretary

[quote Aurorie11]@Yarnivore just had call with GP, first thing they said was you need an epi-pen. DH off to collect now, his reaction oh god! he hates anything to do with needles.
Appointment made with practice nurse to be shown on how to use.
Waiting on call back from private docs secretary[/quote]
Oh that is good news. Hopefully the GP has followed protocol and prescribed 2!

You can order a trainer pen from Epipen website and they have good advice too.

I am so pleased this is being taken seriously for you

@Yarnivore yes a box of 2

Thanks for tip on trainer pen