I’ve been 5 days with almost zero hives, which is miraculous (or a temporary break) – thought I’d share.
I’m really grateful for forums like this. My CU (not cholinergic, hope that’s OK – it’s idiopathic) started in early April – just awful, as you guys know. Mine is head to toe or migrating in big hideously itchy adjoining wheal-patches anywhere it wants to, all the time almost, with angioedema at miserable intervals, worst at night. It’s a very big horrible deal, and others don’t really get it. We all need validation and support, so thanks. Lots of useful tips in here.
I started with the tapering-dose prednisone, handed out by the local quik-clinic. As that was wearing off, and the hives (inevitably) returning, I read entries in a zillion forums , as well as everything else online that I could find. You get a feel for what only works very idiosyncratically and what treatments have better success across the board. And tons of little tips.
I worked with diet (many contradictory theories circulating out there), various supplements and a boatload of OTC 1-blocker antihistamines, the usual.
Cetirizine (Zyrtec) and Xyzal seemed best but only @25% help – still pretty afflicted. Added Xantac (ranitidine, 2-blocker), which was better, but I was still really suffering. I read in reputable medical articles that lots of docs say to take as many as 4 – 6x the suggested antihistamine dosage for urticaria, and I honestly was taking a lot more than that by the time I saw an allergist. Like candy. You get desperate. And still had all-night hives usually, and frequently pretty miserable daytimes, too.
I also started taking probiotics, vit D, stinging nettle, fish oil and I forget what else. They’re all good things that I often take anyway except the nettle, and I’ll stick with them, but honestly didn’t help the hives in any short order.
Anyway, I’d read enough to request Doxepin*, and the allergist agreed.
My prescribed ‘cocktail’ was 2 /10mg Doxepin and a few teaspoonfuls of liquid Hydroxycine at bedtime.I added 1 Xantac/ranitidine to that. Also 2 / .5 lorazipam* a day.
I saw pretty good results right away at night, wow, but tended to wake at about 4-5 AM with new flares starting up. It didn’t hold me through the day. We switched it to 3 Doxepin and more hydroxycine, and for nighttime this has been miraculous. I take the cocktail as late as I can, and I wake hive free, just a few flat splotches, after a good night’s sleep!!
The effect rolls into the day, also, but I still need 1 or 2 Cetirizines or Zyzal with ranitidine – I usually take one in late morning and the other @3PM.
So – for 5 days basically no hives. Some itchy feeling and some flat pale lightly itchy and very transient patches now and then and that’s it. I’m really happy, a bit guarded as sometimes these things stop working.
I’d read that people gain weight on Doxepin, but they’re frequently taking much higher doses.(It’s much lower than the dosage for depression, and side effects are much lower also). I’ll be watching that. I was VERY drowsy the first two days (on just 2) but that’s wearing off rapidly – I feel great today.
I hadn’t seen much difference with food changes (I eat just wholesome whole foods) – but was being very careful with culprits from various theories. I ate pretty much everything suspicious yesterday, as experiment -and I’m good. In my case I think it’s not food – related.
I wrote this because I so appreciate hearing what’s worked for people. Doxepin gets pretty high ranking in studies, too – I’ll post again if it fails me. Wishing every fellow sufferer in here the best.
* Doxepin’s and old tricyclic antidepressant that just happens to be a very strong antihistamine as well. Dose for hives is subclinical re depression.
*My allergist also prescribes light Lorazepam for hives because it makes people so edgy and scratchy – it’s a vicious cycle. I was scratching even where I didn’t itch – that crawly feeling. It helps that, very low dose.
*Please talk to your doctor about the safety of medications and dosages before attempting any treatment.
Thanks,
Becca
Rebecca Cutler says
August 22, 2017 at 8:27 amI wanted to return and update my entry above; it’s been over a month.
I continue to have hives very well under control! I’ve adjusted and readjusted dosage, but if I time it right I have really almost no hives. They’re still there – if I miss a dose things get awful again quickly.
The trick, which my allergist stressed, is to hit them hard just before sleep.
I take 1-2 doxepin (usually 1 now), 1 ceterizine (Dox is a little drowsy so I make up for dropped dosage with the ceterizine), 1 ranitidine and 1-2 teaspoons of liquid hydroxyzine. at about 10PM. I add a 2-5 mg lorazipan if I feel crawly so that I don’t scratch up a real episode in my sleep if a hive or two pops up.
The beauty is that wake hive-free, or almost, and very rarely have any breakout during the day. I sometimes see a few flat discs but they don’t itch. I sometimes take another ceterizine if I suspect an outbreak’s coming, but less and less.
No one thing works for everyone but adding doxepine to the mix really just pretty much fixed it for me. I try to emphasize low histamine foods w/o being too fanatical about it, also – for me no food changes did much.
So good luck all and maybe talk with your doc about giving this “cocktail” a try.