I have had episodes of extreme facial redness and hives that actually weep on my cheeks for about 6 months now. I have been tested for every allergy possible and they all come back negative. I can be totally fine one minute and then the burning sensation starts and I get bright blood red with ringing in my ears and blurry vision. I take a lot of prednisone and hydroxyzine to knock it down but am tired of eating all that crap. I feel terrible, have gained weight, lost hair and can't sleep well. Had my first zolair shot last Tuesday and woke up last night feeling like I had the flu. I am not sure if I should get the next shot or not but something has to give. I have a job that requires me to speak in front of hundreds of people and boards of directors. I now have panic attacks that I will have a flare up during these and sometimes it happens and I have to swallow a bunch of pills. My flare ups seem to come mostly during the afternoon. I have seen 5 different doctors and spent a ton of money to try and get an answer and they all seem to think its ICU. Any advice or help is much appreciated as I think I am becoming depressed as a result of this. I dontlipe togo out anymore for fear of a flare up.
I’m so sry to hear that! Not really sure what to tell you? I stay on a Benadryl regiment and steroids as needed. Even thou I don’t have any food allergies certain foods especially gluten flares me up! So the more I stay gluten the better I feel and less breakouts I have. Have you had your thyroid antibodies checked? And vitamins level? They put me on vitamin D and that seems to help now too... good luck to u!
Hi
Sorry to hear what is going on with you esp having to speak in front of ppl.. I had my fourth xolair shot a week or so ago.. at first i was having joint pain but now it has eased up.. I was told i still need to take my antiistamines and I dont every day except for benedryl at night. But i have found out after about three days of not taking them I get hives again and for the last two days my face has turned bright red and hot but no hives there only on my legs so I guess I will listen even tho after this last xolair shot i thought they were gone, they werent.Every dr I have gone to told me they may never find a reason for my hives as most drs cant find reasons for them.. I try to stay gluten free as much as possible even tho i am not celiac i am sensitive to it and I have a hive flare almost right away or intense itching..It is just so hard to know the right thing to do what is working for one person may not work for you.. it seems to be all trial and error and xolair bandage.. Try not to become depressed but that is easier said than done as i became that way until i started the xolair shots and i am trying to be positive and hope this shot puts me in remission..
Could the facial redness be rosacea or something similar? I've never had hives that weep either, you should get that checked out. You probably want to go to a good consultant immunologist. Angiodema can affect your blood pressure which could explain the ringing in your ears and blurry vision. It might be happening in the afternoon because of tiredness and stress, or something you are eating. But it could also be the hydroxyzine wearing off maybe? I used to find me itching becoming noticeable in the evenings like that. Sometimes the hives are made worse by stress, and noticing the onset of the hives can then actually cause them to flare even more.
Alcohol can be bad news for things like that, and it's also worth trying a very strict elimination diet for a couple of months that eliminates common triggers (gluten, milk, alcohol, eggs, citrus fruits (inc. tomatoes), nuts, food additives, salicylates, sulphites (wine)). It can be food intolerance rather than allergy, so I wouldn't discount diet on the basis of allergy tests. For diets that work for autoimmunity, you could read Dr. Gundry's Diet Evolution or Plant Paradox. Also, there's a great book just published by eminent neuroscientists called Psychobiotics which covers similar material from a different angle. Both books will give you an inkling on how important diet it.
Prednisone will make you put on weight and hydroxyzine won't help either. Also, steroids can mess with your mood and sleep. From what you are writing, it sounds like this is starting to cause you a lot of anxiety. For anxiety, especially public speaking, a beta blocker like Propranolol could help (if you don't have Asthma). For itching, sleeping and anxiety, I found Gabapentin very helpful. Don't get into a situation where panic attacks start to become a problem. I'd get that addresses straight away. Finding a good therapist and doing some talking therapy can be very helpful as it's hard to underestimate how devastating urticaria is. People who haven't been through it don't understand. And the effect it has (and the drugs have) on mood and anxiety levels can make the urticaria so much worse. It can become a vicious cycle.
Apart from diet and mood, the other major factor here is sleep. You need to sort that out to get better. I'd suggest you try Gabapentin to help with your sleep. Two 300mg tablets of Gabapentin got me back to sleeping properly and left me able to function in the daytime, unlike hydroxyzine and other sedating anti-histamines which induce sedation not sleep. You need good quality and quantity of REM and NREM sleep for your body (and emotional stability) to recover. It might be worth reading the book 'Why We Sleep' by Matthew Walker.
If Gabapentin doesn't help you sleep, and you are really in a bind, Amytriptaline is very very powerful antihistamine, controls itching and will make you sleep like a stone. It can help with the daytime anxiety too if that is getting out of control. It will make you very groggy, interferes with your ability to function (driving and concentration) and is bad for appetite increases / weight gain. A good consultant also recently told me that low-dose naltraxone can help suppress the autoimmunity and itching.
Xolair can cause some reactions initially, but I wonder if you should stick with it. If not, you'd be best to get off the prednisone onto something like Dapsone or an immunosuppressant like Ciclosporine or Mycophenolate, to really get control of the hives without causing long-term health problems. For some people a course of Ciclosporine (or Xolair) can help people go into remission. Don't stay on steroids, they will ruin your health and mood.
Lastly, for the panic attacks and and anxiety and general mood, it might be a good idea to start meditation, yoga, tai chi or something similar. Any therapeutic exercise that has you concentrate on technique will help, swimming, running, golf even. Swimming and running are really good as you tend to concentrate on breathing.
I hope you get better soon. I remember clearly the first couple of years of cold urticaria and how bad it was. It will get much better once you start figuring out your triggers and what helps you. It's very individual and takes time to work out your particular puzzle.
Hi Bill,
I get same thing but all over my body. I get xolair shots and take benedryl And pepcid. Sounds like you have mast cell activation syndrome. I have this and just been Dx with it. There are various bloodwork and 24 hour urine test they can do to diagnose this. They can also check your tryptase level. You have to see an immunologist who specializes in this. If you go on Facebook and join m as cell activation syndrome group. They can give you a list in In your area. I hope this helps
Hi Bill,
I get same thing but all over my body. I get xolair shots and take benedryl And pepcid. Sounds like you have mast cell activation syndrome. I have this and just been Dx with it. There are various bloodwork and 24 hour urine test they can do to diagnose this. They can also check your tryptase level. You have to see an immunologist who specializes in this. If you go on Facebook and join mast cell activation syndrome group. They can give you a list in In your area. I hope this helps
Hi Bill --- in regard to your doctors "thinking" it is ICU....please ask them to do the blood work that specifically identifies the condition. It took me 4 doctors before finally my dermatologist ordered the specific blood work for diagnosing hives. Hives totally affect your emotions and anxiety and panic attacks became a big problem for me as well...thus, I am on several anti-anxiety medications that help a lot and now I only take them when I need them. For a while though, they were a part of my daily regimen. I like Doxipan alot to help me sleep and since my hives tend to come at night, this helped minimize my morning break outs. Not a big fan of Atarax, although it helps some people. And, while I know a lot of people are against Xanax, nothing helps me as much as xanax to curb a panic attack. The fear of breaking out can become a very debilitating factor with hives and I have lived that too. I have now been hive free for 3 months and am taking the Xolair injections once a month. They are affecting me for a couple of weeks with overall pain, joints, back, hands, tingling feet, etc. and my hair is falling out more than it should and I have gained almost 40 pounds during the past 8 months since my hives began. The first two weeks after the injections, I hurt, the second two weeks are good. I don't think that the Xolair is singularly the culprit though, I believe that the months on prednisone set me up for weight increase. Although the weight gain is very disturbing to me, I am going to finish out my series of 6 months of injections before chancing the hives return. My doctor has informed me that after 6 months of the injections, often the hives will stay away...sort of like going into remission. So...having said all of that, I would encourage you to take the injections AND don't be ashamed to ask your doctor for some medication that will help you get through the anxiety and panic attacks. And stay connected to this support group. It has been SUCH A BIG help to me! I wish you all the best! It's a journey................
meemaw did u stop all antihistamines with xolair shots?? when i stop the antihistamines i get hives again even with the xolair shot.. I will be having my 5th one the end of the month..
Thanks to all of you for the prompt replies. So, I have already done everything you have suggested, 24 hour urine, multiple blood works, stool sample tests, etc. And I am already taking 1-2 MG of Xanax a day when I feel the hives coming-thisis another concern because I now how addictive that can be. I have seen 2 immunologists, an allergist , an internist and a director if residences at Emory. Money is not an issue, its just about finding a fix. They have all come to the same conclusion that they can't figure it out so shoot up with Xolair. Not so sure I like that as an answer . I spoke to a Holistic doctor today who happens to be a friend of the family and she suggested a bunch f probiotics and various vitamins-so I went and got them and am going to try that. At this point I will try virtually anything. I can't keep taking handfuls of antihistamines every day. I am 6'5" and have weighed 220 since I was inc college and workout hard 4-5 days a week and yet my face looks like a balloon and I am gaining weight rapidly. I plan to do the next 2 shots of Xolair and will keep you all posted. Thanks again for the support, feedback and empathy. It really is a lie altering affliction.
Jana; I did not stop the antihistamines altogether...but I have weaned myself greatly over the past couple of months. I have also stopped the Doxipin at night altogether. I take a Xyzal or 24 hour claritin daily and so far so good. BUT, I did it very slowly....and tested each medication one at a time to see if I could get along without it. I do take venlyfaxine (spelling?) once a day and occasionally I take a low dose xanax is I feel particularly stressed. I have no intention of discontinuing the venlyfaxine...for me, that drug has been a lifesaver for the anxiety and stress that contributes to my hives and just to life in general. I have tried the holistic way too.....lots of supplements and vitamins, had food testing, etc. While I have some gluten intolerance, overall, I did not find that the cost was equal to the benefits. The holistic way can be very costly and of course insurance does not cover any of that. I will be having my fourth series of injections next week. I think all of us on this forum keep testing to see what works best for each of us. Obviously, there's no one medication that covers us all. But, it does seem that the Xolair injections are successful to a great degree for us all....so it is definitely worth the risk of some side effects!
Bill, yes it is a life changing journey.....but, I believe that the Xolair injections will help you! My first ones didn't really show much hope, but by my second injections, my hives were gone and have stayed gone! We're here for you -- sending prayers for you right now!
Bill - one more thing. I have always heard about how addictive xanax is, but I have not found that to be true for myself. I go weeks w/o taking any and then may take one or even two for a couple of days and I have never had any signs of addiction. That's just MY experience.........as your doctor about Venlyfaxine though - it seems to be a very good drug to keep you more even keel........
Thanks again. This is all very helpful and fortunately my primary doc is a close friend so I will ask him about the Venalfaxine. You have all been great and I really appreciate the support. I hope we can all find a way to either overcome or deal with this. One doc gave me doxycycline which is mainly for rosecea and I have continued taking it but can’t see that it helps or hurts. Should I keep taking that? When I researched it it appeared to be an antibiotic and not sure if that’s helping or hurting. When I look at all the pill bottles I have I almost have an anxiety attack.
One last thing. I have noticed that my flare ups really affect my vision. I have had perfect vision my entire life. My dad is 76 and has never needed glasses. When I blow up I can’t see out of my left eye at all. Anyone else experienced this? Thanks
Bill, Xanax is a mast cell stabilizer. Slot of mast cell people do take it when getting flares. Some daily. Don't feel guilty. I take valium for flares. It helps alot. I think if you see the right doctor you'll get proper guidance. I feel your symptoms are alot like what you describe mast cell. Alot I mast cell patients have negative allergy tests. Hi react to a ton of things. Goes with the disease.
Ok. Good to know. I will talk to my primary doc about maybe having Valium for those times I really blow up in situations where I have to speak or present in front of large crowds. I know there are much worse illnesses and I sometimes feel guilty for complaining but it truly has affected my quality of life, my willingness to go out to events and parties with my wife and children and so it’s impacting them as well. They have been great and never complain when I make a last minute call to not go out due to s blow up but I wish it would go away. You guys have been a big help. I just ate another spoonful of chopped garlic and it made my burning face cool down. I’ll take bad breath over the blow ups all day. Have a great night and thanks again.
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
Bill do not quit coming here.. I complain on here a lot and this site has been a godsend to me..We are all in the same boat.. and we need each other for support..And being able to try some of the things that have helped others may help us.. that being said Roll Tide i am from Alabama and cant wait for the game today... Jana