Urticaria/angiodema

[Budgie5]

Is anyone on here taking 3-4 180mg fexofenadine a day for urticaria and/ or angiodema? If so how long before it really kicks in and when do you take your 3 doses if on three, or do you find only 4 really whacks it out? (I had to take 4 a day 3.5 years ago (prescribed by consultant, said 4 daily for six weeks min) and it killed it (think after couple of weeks but can’t remember) and I was able to gradually come off completely and had no symptoms since 2021 but suddenly a few days ago whack it was back

[Rubydiamond]

I have been told conflicting information by the immunology dept. I was taking 2 cetirizine daily (1 in the morning and 1 in the evening) then adding in up to 4 fexofenadine (2 morning,2 evening) when flaring. My latest appointment was with a different immunologist who told me to switch to up to 4 fexofenadine a day but to crunch 2 cetirizine if the angioedema affects my airways. I also have an epipen. Usually 2 fexofenadine keep me stable but I always flare over the winter months, four fexofenadine usually settle it down within a week. I continue on 4 then I cut back to 2 for the rest of the year unless it sets off again. If I cut back to 2 too soon I just flare straight back up. When initially diagnosed the only thing to calm it down was steroids but now I feel that it’s manageable if I catch it when my eyes start to swell.

[Budgie5 in reply to Rubydiamond]

thank you so much for your reply. How long do you tend to stay on four for before cutting back to 2?

[Rubydiamond in reply to Budgie5]

It all depends, during winter once I start to flare then that’s usually it I have to stay on 4 until Feb, March time. Sometimes I can cut back after a couple of weeks if I flare other times of the year, but that doesn’t happen too often. For some reason winter is always worse for me.

[Budgie5 in reply to Rubydiamond]

Same here. For years I had itchy eczema eyes and swelling starting in the autumn I think it’s tree pollen and then maybe the central heating exacerbated and vicious cycle... I used 1% hydrocortisone steroid to control and finally it resulted in strange changes in the histamine receptors in that area with bad burning and swelling on eyes and most of cheeks. Nothing since 2021 till last week. I must say whacking in two last night and two this morning has had much more impact than two a day, which did nothing.

[Rubydiamond in reply to Budgie5]

When I first started I had a couple of episodes then nothing for a couple of years too. Then it started up again and now it’s every winter.

Mine started with my eyes burning with intense itching and swelling shut and cheeks. Sometimes I get red welts around my eyes Nowadays if I catch it early enough when my eyes start tingling and slight swelling it doesn’t go full blown. I do sometimes get throat tightness and difficulty swallowing but that’s not very often.

I would say stick with four for a week then cut back to 3 if that’s ok for a couple of days go back to 2 and see what happens.

[Budgie5 in reply to Rubydiamond]

Thanks Rubydiamond I really appreciate you taking the time to respond. Yes, I know what you mean by that tingling feeling. It eventually flared so badly last time round that I was put on a course of steroids. But two weeks later it was back and that’s when I started 4 daily. This time I started on two a day, and then yesterday I just thought, I’m not going through that again. I was shocked to he put on four a day as obv the licensed amount is only one a day but once I got used to it, which was pretty quickly, I had no obvious side effects at all.

[Budgie5 in reply to Rubydiamond]

Nb do you think three is best done as one mega dose of two and a single or three spaced out…in your experience? I’m wondering if double dose is more effective then a top up…?

[Rubydiamond in reply to Budgie5]

no problem 🤩

I find that two in the morning and two in the evening work well, I wake up with eyes shut otherwise, but I suppose it will be different for everyone.