DS13 Severe Hayfever and Fexofenadine not working

[SplendidPendips]

DS13 is suffering from horrendous hay-fever, as he does every year. Horrendous blocked/runny nose that prevents him from sleeping is his worse symptom. But he also gets itcy eyes and it triggers asthma attacks. GP prescribed fexofenadine two years ago, he could only have the 60mg tablets the first year but since last year has been allowed 120mg. We make sure to start taking them before hay-fever season kicks off, take them daily, use nasal spray, shower every night and have an air purifier in his room. It's just not working. He's been up all night with horrible symptoms. What can we do? I am so so worried about gcses in a few years time. He can barely sleep or function.

I also have heyfever like this and on fexofenadine. I paid las year and this year for the heyfever injection best thing ever. It doesn’t get rid of all symptoms but in my case definitely makes it a lot more manageable.

He needs a referral tbh.

Fen also comes in 180mg, also taking a different antihistamine as well.

It sounds miserable and with his asthma I would be pushing hard for a referral.

Can you try him on the nasal spray? It takes a few days to build up fully but I use it every summer along with the eye drops and the antihistamine tablets.

What is the hayfever injection? Where did you get it?

@Towerofsong I got it from a local asthetics lady local to me. It was £30 and you can have it topped up after about 6 weeks if needed but I found it helped enough to only need the one.

I have massive empathy here started suffering when I was 22 and it ruins spring/summer.
The best thing I tried was homeopathy I went to a practitioner and it reduced my symptoms so much from that year onwards.
There were times I couldn't get out of bed with it hospital with asthma attacks etc. it hasn't been as bad since having the homeopathy.
I take Clarityn as everything else drugs me up and debilitates me just makes me sleep.
Basal spray is a must I also bought some wipes last year and a nasal barrier the wipes were great for when the eyes itched and nose dropped.
Different things work for different people. And different places I find going to the coast a nightmare. When I went to Windsor last year I didn't have it at all! I love in Yorkshire and think it started with oil seed rape growing.
And it completely drains you of energy.
You will have to fine-tune your son's symptom management for exams.
I think exams should' be done sooner and the whole school year shifted round personally.
Don't let it be dismissed as only hayfever it's an attack on your body. I hate Summer.🌞

Thank you.

@Towerofsong he already takes nasal spray as well.

Those mentioning a referral, I think this what we need to do. Who would it be a referral to? An allergy consultant?

Is your ds stressed? I find when I’m stressed hayfever much worse.

I’ve just come back from rural France and finding U.K. suburban area it’s horrendous. Not sure why it’s so bad in U.K. as in France I’d not any symptoms 🤷‍♀️

Try one of the older antihistamines, particularly acrivastine (Benadryl) which is now available over the counter. It’s 3 times a day rather than once and is much more effective for my severe hayfever than fexofenadine.
Also worth adding in bee propolis which can’t do any harm and some people swear by.
But for my exams the gp prescribed prednisone which is an absolute game changer. I started on 5 a day and reduced it down to a maintenance dose of 1-2 a day for the month. You’d need a sympathetic gp to do it I’m sure but we’d tried everything else available at the time. Hope you find something- it is crippling so I have huge sympathy for your ds.

Yes benadryl nasal spray has been great for me.

I'm like this OP and have been since I was a child.
GP told me to take fexofenadine twice a day because it only works 8-10 hours apparently. I also have Avamys nasal spray. It's a lot better with this regime.

Sorry you did say he is already on the nasal spray, I missed that. I would ask for a referral to the allergy clinic

Do you have a link, or a name for what it is?

Thanks. I am going to ask for a referral to an allergy clinic and an increase to 180mg fexofenadine. I'll also get him to either double up on the fexofenadine by taking another in the evening or introduce another antihistamine instead.

He takes Nasobec Aqueous nasal spray at the moment. Don't really understand the world of nasal sprays but it sounds like I should ask for a steroid nasal spray instead?

I get hay-fever myself and had to stay inside at school break times with wet paper towel over my eyes! So know how hard it is. His is much worse though. I think it's the nose issue that makes it hard as it really impacts his sleep.

Yes, he is quite a stress-y person and also prone to depression, so I am reluctant to look at injections as they can have side effects.

I keep a couple of gel eye masks in the fridge and freezer or you could use a generic ice pack.

Obviously they’re good for the eye symptoms but I also find that if I mould them round the bridge of my nose it helps reduce any internal swelling/inflammation and makes it much easier to breathe.

Fab ice lollies are also great if you get an itchy mouth with it…cooling and soothing and you can a rather the roof of your mouth with the bobbly bits 😁

Good idea about ice packs for the nose. It really is like a bunged up nose with a cold for him.

Local honey helps too.

Have you tried the Beconase nasal spray? They do a children's version. It takes a few days to start working but it's been brilliant for me.

Acupuncture more or less cured my horrendous and debilitating hay fever from which I had suffered for years and years. I hated summer with a passion, never went outside, got blisters inside my eyes regularly - the summer months were hellish. It doesn't get rid of it completely but bloody hell it makes a huge difference. You could also try an ioniser, which also really helps. Wrap around sunglasses for going outside, Opticrom antistin eyedrops, dry all sheets and clothes inside, you can get a special vacuum cleaner for allergies so get one of these and clean his room with it regularly. Stress definitely makes it worse.

There are different type of sprays so ask your surgery for a more effective prescription only spray with a different action to the one he’s been using. Maybe Avamyst?
Find out if he can safely combine another antihistamine with fexofenadine.
See if they can prescribe 180 dose.
Trial giving the 120mg in the evening v morning, also trial it as a 60/60 divided dose morning and evening.
Keep his windows and door closed and run the air purifier continuously . Consider upgrading your machine.
Wear sunglasses/glasses when outside and use a pollen trapping barrier cream by nostrils.

Honestly we got nowhere and had to resort to the (privately available) steroid injection Kenalog. I’m not sure if it’s safe/available for children. I’d be surprised if anyone other than a doctor or medical professional can administer it but maybe they can. You’ll find someone by googling.
It used to be available on the nhs but no longer is. It’s quite possible the stress the symptoms are causing is way worse than any possible consequence from the injection.

I get hayfever like your son and it's miserable.

Pls check what is age appropriate from my recommendations!

I take 1 x Fexofenadine in the morning

2 x Nasonex spray - you need to start this a few weeks before you get symptoms as it's a steroid spray and keep going till the hay fever season is over

Opticrom drops for eyes - also a steroid so start just before symptoms start

1 x Fexofenadine at night
1 x cetirizine at night

Ventolin as needed and the steroid inhaler

I only need to take this in hayfever season with the steroids drops/spray just before

Unfortunately mine was so bad in 2021 that I ended up in A and E on the nebuliser as I couldn't breathe at all and my throat and nose were so swollen. But since I've been following this regime I haven't needed to go back!

I wouldn't double up without speaking to the doctor but it is definitely possible to deal with the symptoms though it took a lot of trial and error to get to this point

Kenalog is the jab and you can only have 2 per season. Please get it from a registered practitioner, not a beauty shop. As he's a child, he'll probably need to be referred to paeds. Not sure if kenalog is licensed for use in children.

I also came to say acrivastine - it’s the only thing which touches my hideous hayfever at times. 3x a day.

My ds is in his 20's now and Fexofenadine is not strong enough, nor for me. We both have a Kenalog steroid injection after 3 days of symptoms and it works. You'll need to check if your ds at his age can have it.