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Antihistamines

11 replies

rainbows55 · 06/04/2025 17:35

Hi have started four a day cetirizine (switched from fexo as no longer working) - make me feel a lot more sleepy… anyone else who takes them, did you just get accustomed to the cetirizine after a while and that effect wore off? Or anyone doing antihistamine combos?

OP posts:
RainbowZebraWarrior · 06/04/2025 17:38

Hi there. I take four a day ceririzine for chronic urticaria. I found it difficult at first as I also take codeine for pain, so the combination had me looking and feeling spaced out. My Immunology consultant advised me to take 10mg four times a day well spaced apart (I'd originally been advised to take 2 x 20mg) that definitely helped. I'm also on monthly omalizumab injections.

rainbows55 · 06/04/2025 21:04

RainbowZebraWarrior · 06/04/2025 17:38

Hi there. I take four a day ceririzine for chronic urticaria. I found it difficult at first as I also take codeine for pain, so the combination had me looking and feeling spaced out. My Immunology consultant advised me to take 10mg four times a day well spaced apart (I'd originally been advised to take 2 x 20mg) that definitely helped. I'm also on monthly omalizumab injections.

Hi there yes that’s what I was on fexofenadine for - intermittent chronic urticaria. Hadn’t had it for a few years then bam. Really interesting that your immunologist advised to take it spaced apart and that it worked better in terms of the drowsy side effect, as everything I’ve read so far has suggested 2 x 2 a day - I thought it was for efficacy but perhaps that’s advised for convenience. Did you ever try fexofenadine or a combo as I’ve been reading that sometimes a combo can be more effective although there’s also some conflicting theories/thoughts on this! I’m also surprised that you’re taking omazulimab on top of antihistamines I didn’t realise Omaz iwas an add on, I thought it was an ‘instead of’. Have also read about people adding on ranitidine (now banned) or famotidine - did you try that?

OP posts:
RainbowZebraWarrior · 06/04/2025 21:21

rainbows55 · 06/04/2025 21:04

Hi there yes that’s what I was on fexofenadine for - intermittent chronic urticaria. Hadn’t had it for a few years then bam. Really interesting that your immunologist advised to take it spaced apart and that it worked better in terms of the drowsy side effect, as everything I’ve read so far has suggested 2 x 2 a day - I thought it was for efficacy but perhaps that’s advised for convenience. Did you ever try fexofenadine or a combo as I’ve been reading that sometimes a combo can be more effective although there’s also some conflicting theories/thoughts on this! I’m also surprised that you’re taking omazulimab on top of antihistamines I didn’t realise Omaz iwas an add on, I thought it was an ‘instead of’. Have also read about people adding on ranitidine (now banned) or famotidine - did you try that?

I've had chronic urticaria for 30 years and yes, the omalizumab injections are given alongside the high dose antihistamines which I was surprised at too when I first started them.

Fexofenadine gave me cellulitis, so I was taken off it immediately. This was around 10 years ago when it first came out. I tend to react to a lot of meds (I have EDS and MCAS)

Also tried Ranitadine (mostly to try and calm acid reflux from my hiatus hernia) before it was banned but haven't tried Famotidine as the Ceririzine + Omalizumab is working for me. I take too many other meds to change as something always interacts so if I'm safe on something, I stick with it, even though it may not be perfect.

rainbows55 · 07/04/2025 00:05

RainbowZebraWarrior · 06/04/2025 21:21

I've had chronic urticaria for 30 years and yes, the omalizumab injections are given alongside the high dose antihistamines which I was surprised at too when I first started them.

Fexofenadine gave me cellulitis, so I was taken off it immediately. This was around 10 years ago when it first came out. I tend to react to a lot of meds (I have EDS and MCAS)

Also tried Ranitadine (mostly to try and calm acid reflux from my hiatus hernia) before it was banned but haven't tried Famotidine as the Ceririzine + Omalizumab is working for me. I take too many other meds to change as something always interacts so if I'm safe on something, I stick with it, even though it may not be perfect.

I’ve just been reading up on MCAS, and learnt that tests for tryptase etc and other evidence in bloods or urine have to be done during a flare. My tests weren’t so there was no evidence. But I also read that if symptoms respond to antihistamines that this is usually an indicator of MCAS. So I guess a fair number of people have it and most likely I do. Re the fexo, sorry you had that side effect, not nice, poor you 🤗. Sounds like you’ve got your combination for urticaria finally sorted though. Sorry to hear of your other health conditions. I’ve also got another auto immune disease, which I suspect may be linked to/causing mine.

OP posts:
RainbowZebraWarrior · 07/04/2025 07:33

rainbows55 · 07/04/2025 00:05

I’ve just been reading up on MCAS, and learnt that tests for tryptase etc and other evidence in bloods or urine have to be done during a flare. My tests weren’t so there was no evidence. But I also read that if symptoms respond to antihistamines that this is usually an indicator of MCAS. So I guess a fair number of people have it and most likely I do. Re the fexo, sorry you had that side effect, not nice, poor you 🤗. Sounds like you’ve got your combination for urticaria finally sorted though. Sorry to hear of your other health conditions. I’ve also got another auto immune disease, which I suspect may be linked to/causing mine.

Yes that was exactly the same for me re tests for MCAS. In the end, they treat for symptoms anyway. (NHS)
Obviously the Omalizumab was originally licenced for asthma but now given for urticaria, the benefit is that it also controls my moderate asthma. I wouldn't have qualified for the Omalizumab for my asthma alone as it wasn't severe enough.

It might be worth you keeping a diary of your symptoms ro see if you're eligible for Omalizumab. I can take a photo of the form I use if it's helpful for you? Hope the drowsiness improves soon. It's a pig when the thing that's meant to help you makes you feel worse. I take one cetirizine at 7am in the morning which doesn't make me drowsy at all and I'm able to drive my DD to school. Then one at lunchtime, again doesn't make me drowsy and I'm able to pick up DD at 3pm. My other two are taken at 5pm and bedtime (9.30 - 10pm). I'm usually utterly shattered by 6pm anyway due to chronic fatigue and pain so additional drowsiness is partly due to that and my pain meds being around the same time.

Oh, also do you use / have you tried this Menthoderm 5%? I find it very cooling for my itchiness especially in summer. Apologies for pic - I keep mine in the fridge so it's even more cooling.

It is rubbish having a combination of medical issues to juggle meds around so sending hugs to you too. Sorry for the rambling posts, I'm just thinking about anything that may be of help to you.

Antihistamines
Digon · 09/04/2025 20:29

RainbowZebraWarrior · 06/04/2025 21:21

I've had chronic urticaria for 30 years and yes, the omalizumab injections are given alongside the high dose antihistamines which I was surprised at too when I first started them.

Fexofenadine gave me cellulitis, so I was taken off it immediately. This was around 10 years ago when it first came out. I tend to react to a lot of meds (I have EDS and MCAS)

Also tried Ranitadine (mostly to try and calm acid reflux from my hiatus hernia) before it was banned but haven't tried Famotidine as the Ceririzine + Omalizumab is working for me. I take too many other meds to change as something always interacts so if I'm safe on something, I stick with it, even though it may not be perfect.

I’m sorry to read hiw bad your hives are. I also take Fexofenadine and was unaware that it can cause cellulitis. I am having a problem with my calf swelling just wondering if there is a link.

Digon · 09/04/2025 20:30

Digon · 09/04/2025 20:29

I’m sorry to read hiw bad your hives are. I also take Fexofenadine and was unaware that it can cause cellulitis. I am having a problem with my calf swelling just wondering if there is a link.

I also have Mcas.x

rainbows55 · 10/04/2025 12:08

RainbowZebraWarrior · 07/04/2025 07:33

Yes that was exactly the same for me re tests for MCAS. In the end, they treat for symptoms anyway. (NHS)
Obviously the Omalizumab was originally licenced for asthma but now given for urticaria, the benefit is that it also controls my moderate asthma. I wouldn't have qualified for the Omalizumab for my asthma alone as it wasn't severe enough.

It might be worth you keeping a diary of your symptoms ro see if you're eligible for Omalizumab. I can take a photo of the form I use if it's helpful for you? Hope the drowsiness improves soon. It's a pig when the thing that's meant to help you makes you feel worse. I take one cetirizine at 7am in the morning which doesn't make me drowsy at all and I'm able to drive my DD to school. Then one at lunchtime, again doesn't make me drowsy and I'm able to pick up DD at 3pm. My other two are taken at 5pm and bedtime (9.30 - 10pm). I'm usually utterly shattered by 6pm anyway due to chronic fatigue and pain so additional drowsiness is partly due to that and my pain meds being around the same time.

Oh, also do you use / have you tried this Menthoderm 5%? I find it very cooling for my itchiness especially in summer. Apologies for pic - I keep mine in the fridge so it's even more cooling.

It is rubbish having a combination of medical issues to juggle meds around so sending hugs to you too. Sorry for the rambling posts, I'm just thinking about anything that may be of help to you.

Hello there I thought I had replied to this, so sorry :-(. Just wanted to thank you for your kindness and empathy 🤗. Can’t use that lotion because mine is around my eyes and cheeks, but thanks so much for the suggestion - and your antihistamine schedule! X.

OP posts:
MastieMum · 10/04/2025 12:20

As the name suggests, another mastie here! My chronic urticaria really improved with a low histamine diet in combo with anti histamines. The SIGHI list is the best resource to look at if you are interested in that?

RainbowZebraWarrior · 10/04/2025 13:04

Digon · 09/04/2025 20:30

I also have Mcas.x

I think I was very unlucky getting cellulitis, but it was all that the hospital could put it down to. I got it again when I was put on amlodopine for my BP.

If your calf swelling includes any redness, I'd definitely ask the question of your GP if it could be related. Both times my cellulitis was in my lower legs and Ankles.

Digon · 10/04/2025 13:19

RainbowZebraWarrior · 10/04/2025 13:04

I think I was very unlucky getting cellulitis, but it was all that the hospital could put it down to. I got it again when I was put on amlodopine for my BP.

If your calf swelling includes any redness, I'd definitely ask the question of your GP if it could be related. Both times my cellulitis was in my lower legs and Ankles.

Thanks I will approach GP. I hope things will improve for you, not easy coping with health conditions as well as children.x

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