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[Pumpkin55]

Hello Ladies

Any of you taking fexofenadine for urticaria/angiodema, do you find the best time to take them is in the evenings or mornings? And do you always take with food like it says on the packet?

Thanks x

[candicet]

Hiya

I'm taking 180mg a day at the moment because I've had intermittent hive "attacks" although quite mild- like a few at a time, or a rash around my mouth or eyes - things like that.
I take one 180mg tablet on an empty stomach (before a meal).

[RebJT]

I take it three times a day due to histamine intolerance (don't get itching).  Histamine intolerance is connected to estrogen (sure you know this).  I just take it whenever, never caused any issues ...

Reb
x

[candicet]

Hiya Reb

I heard Dr Louise Newson do a podcast on Histamine intolerance which was very interesting.
I thought maybe I had it, but not too sure if I have. My GP put me on the Feno to try and "calm down" the eruptions because I thought they were a bit more frequent when I started the HRT - I just felt itchy in general, but I have had rashes and odd flare ups since April of last year, and I only started the HRT 5 weeks ago so I can't be sure yet of what is going on, or if maybe the Estrogel is tipping the balance more towards the rashes.

Are you on HRT as well?
I'm sorry I'm not very knowledgeable on this - I think you are probably way more knowledgeable than me. x

[Pumpkin55]

hi Reb
Thanks for your reply.
How long have you taken three a day for? Do you have the odd glass of wine with them or no alcohol at all?
Thanks so much

[Pumpkin55]

Hi Candice
I too have had rashes around eyes, began small but have progressed to full-blown angiodema attacks :-( v unpredictable. I’ve tried the low histamine thing - hard to know if it worked, it didn’t while I was doing it but then after I had done it for several weeks I decided to eat what I wanted, after a couple of successful histamine meals. I did this for several weeks and all was calm but then it randomly flared. I guess the weeks of calm may have been because I’d lowered my histamine bucket in the weeks before, it’s hard to know. Then, as I was thinking it was all behind me and tailed off my anti-h, it flared again randomly.

[candicet]

Hi Candice
I too have had rashes around eyes, began small but have progressed to full-blown angiodema attacks :-( v unpredictable. I’ve tried the low histamine thing - hard to know if it worked, it didn’t while I was doing it but then after I had done it for several weeks I decided to eat what I wanted, after a couple of successful histamine meals. I did this for several weeks and all was calm but then it randomly flared. I guess the weeks of calm may have been because I’d lowered my histamine bucket in the weeks before, it’s hard to know. Then, as I was thinking it was all behind me and tailed off my anti-h, it flared again randomly.

Hiya Pumpkin55. Before I started taking HRT I had a horrible flare up where my tongue swelled up - right at the peak of the first Covid 19 Wave - I called an uber and went to A&E - that was the first time I had anything like this. I have had no health issues all my life, but I think this has been related more to Meno than anything else. My body just can't tolerate the same things that it used to. The night i went to hospital I had Salmon with a miso Marinade, Kale and red cabbage - about the healthiest meal you can imagine. I didn't eat Salmon for months and had loads of tests all of which came back normal.
My GP has said to me to keep with the Feno for 30-60 days to keep everything calm.  I think you may be right about banking tolerance for histamine when you practice a low histamine diet. Then it creeps up on you... trial and error I guess.

[Pumpkin55]

Hi Candice
Isn’t menopause the worst? :-( I had nothing like this before - and it’s on my face under my eyes so I cannot hide it and it’s totally debilitating when it happens. I was put on steroids for the first time after my latest flare up, when I was advised by a go to go to a&e, it was much worse than ever before, and I was given an epi pen. Skin **** tests did not show allergy to food I suspected, I am awaiting various blood test results on enzymes etc.  I have avoided HRT because of dense breast tissue and changes . Have you found HRT improved things on the urticaria front? Are you just taking one fexo per day? And are you doing a special low histamine diet? I’ve been advised not to because it’s too restrictive and not good for you.

[candicet]

Hi Candice
Isn’t menopause the worst? :-( I had nothing like this before - and it’s on my face under my eyes so I cannot hide it and it’s totally debilitating when it happens. I was put on steroids for the first time after my latest flare up, when I was advised by a go to go to a&e, it was much worse than ever before, and I was given an epi pen. Skin **** tests did not show allergy to food I suspected, I am awaiting various blood test results on enzymes etc.  I have avoided HRT because of dense breast tissue and changes . Have you found HRT improved things on the urticaria front? Are you just taking one fexo per day? And are you doing a special low histamine diet? I’ve been advised not to because it’s too restrictive and not good for you.

Hiya Pumpkin55

that's a good question. I think the HRT is helping but only 5.5 weeks in so I'm still experimenting with levels and until I find out if I can have testosterone and implement that into my regime, I don't think I'll know.
I had a flare up about a week after taking the HRT, but then I went onto the Feno so it could be that and the HRT that are helping.
Not doing a low histamine diet. I read up on it but it's the foods that I love (yoghurt, pickles, miso - fermented foods) and that are good for your gut. I'm just trying not to be too excessive and to eat wholefoods and enjoy some crap too occasionally.
What really surprised me was how all of this flared up virtually overnight - since last April and since then, I was taking Anti-histamines, then I was diagnosed with  Haital Hernia, a lot was unravelling and I'm still trying to find out what is meno, and what is maybe something else.
i think it's good to try and make small efforts, small changes, and not to do anything too drastic. Monitor things.
I'm going to give the Feno and the HRT a good go and let my body adapt.
keep in touch and let me know how it goes.

[RebJT]

Hi

Sorry late replying.  I don't drink wine, I'm sworn off it forever, it's just so high histamine, it's not worth it.  My tolerance for it is also totally gone, I just don't like how I feel on wine, it makes me really drunk these days, horribly hungover the next days, just evil stuff.  I only really drink Gin and Tonic, which my gynae told me to stick to.  I eat a low hist diet as well (well I do most of the time, I do cheat).  The problem with histamine is it drives up your estrogen, then your rising estrogen drives up your histamine, it's a horrible loop to get stuck on.  Most women figure this out in peri with the estrogen surges, or as they are put on HRT.  High histamine can make your periods heavy and painful, really miserable stuff.

Good way to think of it is you have a 'histamine bucket' - if you want to get settled on HRT and navigate the choppy waters of peri / menopause you need to keep your bucket as empty as possible, that way when you 'cheat' and have a glass of wine, or a G&T, or go to a restaurant and eat the wrong thing, and take your HRT, you don't flood your bucket and have a melt down or eruption.  There are various schools of thought on histamine elimination dates, personally I think you can't cut major food groups out of your diet forever, but it is good to be strict to start with, and then add things back slowly and see if you react (e.g. I can't really eat curry any more, the spices seem to set me off).

There is also a connection with histamine and anaemia, I've just had an iron infusion (heavy periods caused by the high estrogen are causing the iron loss) and have had a radical improvement in histamine symptoms.  I've also now switched off estrogel and utrogestan (was struggling to tolerate the prog, lots of histamine sensitive women also have a hard time with progesterone) and I'm on my first month of Qlaira (contraceptive pill for peri menopause, has natural estrogen and dionegest progesterone, meant to be better tolerated) and seem to be doing OK.

When I first started, I had to come off all hormones, get the histamine very strictly under control, then start again.  Now iron is sorted I am feeling radically better.  My gynae said that lots of her colleagues are not joining the dots on women our age (either before, or as they start HRT) suddenly complaining of rashes, asthma, hay fever, itching, etc etc etc.  She said she thinks it affects 25% of women.

Hope that helps,

Reb
x

[RebJT]

PS I've been on fexo for about 18 months.  I also take montelukast 10mg off label as a mast cell stabiliser (it's an asthma drug), it can affect mood but I do OK on it.  I've dropped the H2 antihistamine (Zantac and then Pepcid, again used off label) as it was affecting my iron absorption.  My goal is to get to a point where I can only use the fexo for flair ups, and not have to take it every day, it only blocks the AFFECT of histamine, it doesn't do anything for the cause, and I'd rather tackle the cause.

x

[candicet]

Reb, this is all really interesting.
I'm thinking my mum might have a bit of this going on.
But she's 75. And I'm 51 and post meno by a couple of years so I'm wondering how it affects that profile, because if you're peri, you're still fluctuating with the Estrogen right? Whereas if you're post - it reaches a low baseline as I understand it....
Mine has only started post meno.
The mystery continues..... Hope you are ok. You sound like you're handling it really well. x