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Allergies and intolerances

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Original poster

Antihistamine and urticaria help needed

26 replies

Loobylou99 · 17/08/2023 10:29

Hi all, I've have chronic urticaria and have tried several antihistamines with no luck. I've double dosed them all with GP advice. I'm about to start yet another 3 day course of steroids but this gives me relief for 4/5 days only then its back like a bad smell. My GP has said Cetirizine 10mg can be taken 4 times a day.
Does anyone else take this amount? I'm wondering how the best way to take it is. 20mg morning then 20mg at night or spread 40mg over the course of a day?
Thank you so much in advance
Lou 😀

OP posts:
GeraldTheGoodMouse · 20/08/2023 11:28

4 cetirizine a day is standard treatment, 2x2 would probably be most effective.

I take them for a different allergy but even though they're supposed to last 24hrs the morning ones do wear off by late evening.

frazzledasarock · 20/08/2023 11:34

I take it twice a day. At first it worked really well, now it doesn’t although stops itching and appearance or progression of the hives I also tend to go into anaphylaxis so that’s fun.

side effects for me are shorter menstrual cycles and heavier periods. It’s definitely this med that’s doing it.

moneymoney2023 · 20/08/2023 11:41

Look in to vitamin D. Taking a really high dose of 4000 has massively helped me

Bonfire23 · 20/08/2023 11:43

I usually take 2 am and 2 pm
Have they suggested anything else? Fexofenadine, a specialist referral...? There's a lot that can be done
I'm 27 years into chronic urticaria and now on Xolair injections

AllProperTeaIsTheft · 20/08/2023 11:49

I had this on and off for years. Antihistamines didn't work. Eventually I was advised to take Cetirizine with Ranitidine, which is an indigestion tablet/antacid but apparently also suppresses the histamine receptors in the gut. It worked immediately - urticaria gone within an hour! I took the combo for a while until I was able to stop without the rash returning.

Ranitidine has been withdrawn due to an issue with contamination, but there are other versions of the same type of drug, which should work the same.

Holidayhappiness · 20/08/2023 11:52

I’ve been put on Montelukast for the urticaria - it blocks the inflammatory proteins apparently and my son took it years ago when he wasn’t responding to his asthma pumps. My GP said that a number of dermatologists are using it now and it’s definitely helping me, together with high dose fexofenadine. I’m on 180mg but you can go higher if you need it.
It’s a bit trial and error I found. Cetirizine does literally nothing for me!

Rubyrach · 20/08/2023 12:02

Fexofenadine is the only thing that helps mine.

Original poster
Loobylou99 · 20/08/2023 19:14

Thank you all so much for responding and with some really interesting thoughts.

frazzledasarock that is awful and so scary for you!

moneymoney2023 i did read a little on vitamin d and have started that.

Bonfire23, AllProperTeaIsTheft and Holidayhappiness, it's really interesting to hear about the other drugs you use. I will definitely keep that in mind.

I thought it was a 3 day course of steroids but its actually 5 days. Today is day 3 and I have a few new urticaria patches which I've never had before on steroids. That's doesn't feel like a good sign. Along side them I'm taking cetirizine 20mg am and 20mg pm.
Before that I tried loratadine (think 10mg) at a double dose so 20mg daily and fexofenadine 120mg double dose so 240mg daily. My GP said cetirizine was the only one I could increase the dose on and take 4 times the amount so I went back to that. She said if that doesn't work she will write to dermatology and immunology as she has no idea what to do next. I like the honesty in that!
I have seen derm and immunology before without much luck but that was 10 years ago and things change.

Rubyrach, fexofenadine was what I was hoping the GP would say go higher dose on as out of all 3 I'm not sure if it had a slight effect and maybe higher would be better. But she said I could only go higher on cetirizine

OP posts:
dumpling123 · 20/08/2023 19:20

I had chronic urticaria for a few years and took telfast 120 mg morning & evening (think it's over the counter now). Also had ranitidine morning & evening but it became very difficult to source. Had other tablets prescribed on and off alongside but telfast was my staple and it was great

Rubyrach · 20/08/2023 19:22

Ah ok, I have 180 mg tablets and can take twice per day if needed. Dermatology prescribed. I do have other auto immune conditions. I haven’t tried it yet but e45 have brought out a cooling gel. I tend to put my moisturisers in the fridge which helps a little. Hope you get it sorted, it’s crap x

Bonfire23 · 20/08/2023 19:41

Both taken after exercise (most of my urticaria is exercise/heat induced)
Before Xolair and with Xolair

Antihistamine and urticaria help needed
Original poster
Loobylou99 · 21/08/2023 07:28

Thank you dumpling123 and Rubyrach, I'm making notes of every suggestion.

I feel like this is going to be a long journey but its good to know there are other options to try.

Bonfire23 wow what a difference, I'm so pleased you found something that is helping

Thanks all 😁

OP posts:
cathcath2 · 22/08/2023 22:38

I'm on Fexofenadine up to 4x180mg a day. It was prescribed by dermatology though and the pharmacist nearly had a fit! "You know this is a very high dose?" Errrr yes, but I quite like actually being able to see, drive, clean my house, go to work. I think it has to be prescribed by a specialist at that level because it had to be labelled as 'off-license dose'. Once they prescribe it, your GP can take over.

Original poster
Loobylou99 · 22/08/2023 23:55

Thank you cathcath2, it's really interesting to hear people are taking higher doses of fexofenadine. I'm going to discuss that with my GP and hopefully she will get advice from dermatology like she said

OP posts:
Original poster
Loobylou99 · 24/08/2023 06:53

Cathcath2 thank you for taking the time to post that, its very kind of you and very interesting. I'm going to talk to my GP about this and see what she can do. I suspect she won't increase unless started by a derm but my bday is coming up so maybe I ask for a private derm appointment as a one off for the GP to then manage? Don't think I'll ever get to see dermatology as nhs!

OP posts:
MastieMum · 24/08/2023 07:08

Have you tried a low histamine diet? I had to for another condition, and as a happy side effect it really helped my chronic urticaria!

hopsalong · 24/08/2023 07:14

Ask for bilastine. If your GP won't prescribe then ask anyone currently on holiday in Europe to buy you a few packets in the local pharmacy. It isn't a prescription drug in most European countries and I discovered it by chance in Greece when dealing with a huge number of mosquito bites.

I also suffer from occasional urticaria as well as severe seasonal allergies. Bilastine isn't better for me than other antihistamines at clearing up the rhinitis but it seems super effective at anything to do with skin. Also you can updose without too much concern. See eg www.ncbi.nlm.nih.gov/pmc/articles/PMC3759706/.

Pruneaux · 24/08/2023 07:20

AllProperTeaIsTheft · 20/08/2023 11:49

I had this on and off for years. Antihistamines didn't work. Eventually I was advised to take Cetirizine with Ranitidine, which is an indigestion tablet/antacid but apparently also suppresses the histamine receptors in the gut. It worked immediately - urticaria gone within an hour! I took the combo for a while until I was able to stop without the rash returning.

Ranitidine has been withdrawn due to an issue with contamination, but there are other versions of the same type of drug, which should work the same.

This is what worked for me too. Immunologist suggested it. And it worked. This was twenty years ago. Now my urticaria has subsided all together. Good luck OP💐

Original poster
Loobylou99 · 25/08/2023 06:59

MastieMum I am on the diet now, anything is worth it. Its interesting how food can play a role in it.

hopsalong I am going to do some googling on bilastine now!

Pruneaux I have that on a list to discuss with my GP thank you.

I was talking to someone yesterday who had horrific eczema to the point she was housebound . Out of desperation she had acupuncture by a very well credited expert and 3 months later it cleared up and nothing since. There isn't much research on this but always worth a desperate shot! I don't want to try too much at once though and then I don't know what works!

All very very interesting

OP posts:
SoGladofYou · 25/08/2023 07:55

I would just like to mention to anyone following that it is fine for you to take multiple doses of AHs provided you have discussed it with your GP/skin specialist. But please be aware that AHs increase eye pressure and so should be taken with caution by people with certain eye conditions.

AgnesX · 25/08/2023 07:58

I've taken loratidine in the morning and cetirazine in the evening which helped but honestly, it kept it manageable only.

Chronic urticaria is so energy sapping.

pudseypie · 25/08/2023 08:05

I take up to 4 x fexofenadine a day, again via a dermatologist. The only thing that has remotely helped. I also have steroid creams.

jajabanks · 25/08/2023 08:40

Hi when I had it I had either 4 lorotadine (sp?) Or 4 fexafenadine OR two lorot and two fex. I actually found/find the lorotadine the best for me so may be worth trying 4 (2 morning 2 night) different antihistamines.
Hope you're doing better soon xx
Oh also found using balneum bath oil really took the itch out in the evening. Xx

Summerhillsquare · 25/08/2023 08:40

Rubyrach · 20/08/2023 12:02

Fexofenadine is the only thing that helps mine.

Me too. GP said 2 a day is fine.

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