extreme facial redness and hives

You really need to have it confirmed what you have so that it can be diagnosed accordingly. There are various types of urticaria and different levels of severity. The symptoms you describe I am not familiar with especially with your hives weeping. Personally I get wheals that eventually form into one big lump/swelling or redness that comes along with frenzied itching affecting mostly my hands and feet. Prednisolone used to calm it but long term use is bad. Can cause brittle bones , which I have now and putting on weight. I am slowly losing it as I really try and avoid it. I have been on various medications none have really worked. I have also had 6 lots of xolair twice. Had same effects. First month ok and more I was having the less effective it was becoming so let's just say it didn't work for me. I understand the terrible sleeping because this is part of it.

I worked as a civil servant working with the public and in the end a voluntary redundancy came up and I took it. It was interfering with my job because you never know what you are like from one day to the next. I don't want to put a dampener on your working life but the bottom line is to eventually find a medication that suits you. What works for one person doesn't work for another and visa versa. Stress can bring it on so try to avoid. Stay on this site and look out for those who have the same as you and try their tips. I try anything and anything in the hope it would help but nothing has so far. I am on new meds Azathioprine so it's early days if they work. I have previously used cyclosporin methotrexate capstone etc etc the list is endless. Trial and error I'm afraid. Just wishing you luck and hope you find something that works for you. Ayda

Hi Bill, I wouldn't worry at all about the anti-anxiety medication. Urticaria causes anxiety and anxiety causes urticaria so that's a vicious circle that needs to be sorted out. But sleep is another one, and you'd be better to try gabapentin rather than hydroxyxine. I actually found SSRIs helped for the hives, but didn't like the other side-effects like early-waking, upset stomach and restlessness / lack of concentration and increases energy levels. But I wasn't depressed when I took them and they started to make me a bit too 'happy'.

I found for me I actually sleep much better and function much better the next day with that. Also, probiotics are helpful, but only if you take them with prebiotics like Inulin. Bifido bacteria based probiotics are supposed to be good for inflammation, according to the latest scientific research. Natural foods like Jerusalem artichoke and raw onion and leeks or you can look for the powdered form and add it to Yoghurt or Porridge. You also need to control your diet to cut out sugars, alcohol, white flour, starches and simple carbs and replace them with vegetables, especially leafy green ones, onions leeks and so on and also in-season fruit (not juiced). Take a read of that Psychobiotics book, it explains some of that.

You guys have been more helpful than the many doctors I am seeing.  Today I still feel like I have the flu, achy joints to the point it hurts to walk.  I have stayed home from work and right now I have one large circle on my right cheek and another on the left that encompasses my eye, so I have to keep it closed as it itches terribly.  I am not going to take any drugs unless my throat starts to swell up as I have to quit taking those damn things-they are making me crazy.  the ringing in my ears is almost unbearable and I am in my home office away from my wife and kids. It is unusual for me to have the hives early in the morning as I mentioned they usually come in the afternoon.  I really just want to see what happens if I take no drugs for a day or two.  I have to speak in front of a large crowd on Wednesday and so I can always pound them that morning to knock it back buy I can't keep taking them every day like I have been for the last 6 months.  The docs say give the Xolair 3 months before they try anything else and they all seem to agree on that point so I am done asking them for other remedies for now anyway.  If it is mast cell then why would the Xanax not knock it down?  

As far as the comment about rosecea, they had me try soolair, metro gel and Mirvasa and they actually cleared it up for a short time-4-6 hours but when it came back it came back with a vengeance. I actually had to stay home and cancel all meetings for almost a week after that disastrous experiment.  So, they said that is was not rosacea.  

I tried the Gabapentin for sleep and it did not work.  Right now I take a shot of Zee-Quil to knock me out and usually get 3-4 hours of sleep then awake and toss and turn and maybe get another hour or two.  I usually go to the office at 4-5 just because I can't sleep and don't want to keep my wife up.  I do drink beer and have tried stopping that for weeks at a time to see if that helps but it did not.  I do not drink any other alcohol.  I know I am doing all of the complaining here and am new to this sights I don't want to be a burden you guys but I am really running out of patience and to some degree hope that this is going to get better and probably get worse.  I live in Georgia, went to the University of Georgia and we are playing for the national championship tonight.  I was supposed to go but have decided not to. 

Thanks again for the support and feedback.  Bill

I ended back at the doc today around 4 as I was totally blown up and could not see out of my left eye.  The doc saw me immediately and gave me a shot of epinephrine which calmed me down pretty quickly.  I shared some of yawls input and so he sent me back to labcorp for more bloodwork to test for 3-4 other things.  I really think he is trying and sees me like a Rubic's cube.  He is a Yale grad and has practiced for 40 years and says he has never seen a case similar to mine.  We talked about mast cell and so he wants me to try the non-histamine diet.  I did some research on it when I got home and it looks like you can eat oatmeal, sawdust and couscous-that's about it.  At this point I don't care and really don't have much of an appetite most of the time anyway-so I will give that a try.  The good news is I do have the flu-so it's not a reaction to the Xolair.  My wife wants me to see a therapist as she can see that I am somewhat depressed.  This is a vey humbling and debilitating disease.  I will keep you all posted on any changes and thanks again.  Best, Bill

If your sleep is that bad, you are anxious and you feel you are becoming depressed then I would seriously consider going on one of the tricyclic anti-depressants for a period, but not long-term. Doxepin is one of the most effective things I ever took for Urticaria, rash, itchiness, sleep and anxiety. It can help a lot when you are going through the worst that Urticaria can do. It's not without fairly severe drowsiness though, you will find mornings hard and might need to adjust to that (no driving, someone else making double strong coffee and breakfast). Amytriptaline is a little milder, you could try that. Hang in there, one of the things you try will work, you just have to keep experimenting. It's common for appetite to increase and for you to gain weight on those.

Also, don't worry too much, if Xolair doesn't work Ciclosporine probably will. And if that doesn't work, there's mycophenolate and Dapsone too. One of them will do the trick, they do work most of the time and side-effects aren't too bad for most people.

You will feel better once you get off the steroids too, they can really mess you up, physically and mentally and also are terrible for disrupting sleep. A friend who was getting chemo actually found steroids were the worst part as she just could not sleep on them. I find the same. Some people are sensitive to them and they can really mess with mood.

On the diet front, have you tried cutting out beer and all gluten and going on a strict paleo diet?

Also, really might be worth considering meditation if you are anxious and starting to get depressed. It's best to stop that in it's tracks early.

Oh and propranolol is not only good for public speaking anxiety, it also reduces itchiness a bit and also helps in falling asleep. It won't be a revelation, but can help a little. Might be worth adding to the xanax as you can't underestimate how much of a factor stress and anxiety is in Urticaria. That's partly why things like Xanax, SSRIs, TCAs, Gabapentin and things like that are helpful for many people. I think I mentioned low-dose naltraxone. It's tricky, but not impossible to find a doctor that will prescribe that. You want to find a good dermatologist that works with immunology and they will use it as a last resort when a skin problem looks autoimmune based and other treatments have failed.