I’m having sympathy itching over here reading this post. It amazes me how they diagnoses things like this - I mean, it could be any number of things that were causing your hives, and obviously you had to work hard to prove that it wasn’t detergent or food, but its amazing that they could determine that it was your own blood.

I’m really happy to hear how under control it is for you with the drugs. Its hopeful that you won’t have to ever have the same long term hives again. {{hugs}}

Hmm, I don’t know if you’re going to get this or not… hopefully you will…

I am sixteen years old, and I have been living with chronic urticaria for two years now.

No medication has worked, and you’re right about the itching… you just need to do it.

My eyes swell shut, my lips get swollen constantly… my fingers feel fat, and I feel awful.

I’m just curious.. when you would break out, was your face bad? And if it was… did you have a hard time going into public? Did people ever say anything about it or look at you funny?

I have such a fear of going out into public… and furthermore…. to school… looking like I do. People always make fun of the way I look, and I’m just hoping that I’m not alone…

Hiya Meredith!
My name is Ian, I’m 22 from London, and have had Chronic Urticaria for 3 years now, although not as bad as yourself and many others. Mine is cholinergic (I still have to check the spelling of that!) and being an apprentice maintenance technician at an airport…. well I could have chosen an easier career! I just read your post on ICUS which I’ve become a member of recently, and I’m helping make the UK ICUS site.
Quickly I just wanna say how fab your site is, I too use Movabletype and the same photoalbum tool too! So regarding your post, I enjoyed reading it. When I say ‘enjoyed’, its not like I take enjoyment out of hearing you suffer, more that I take comfort knowing that I am not alone, which is how I felt for so long! When I discovered ICUS, I almost cried! Before then, I felt alone, hard done by, and frustrated that no one understood how terrible it is.
I’m currently on Levocetirizine which stunts the Urticaria from appearing as quickly, and also removes the redness, so now I tend to just get covered in red spots. But before it, like yourself I would wake up at night itching from head to toe! When I would finally come to my senses, it would be too late because I had already started scratching. It got to the pont where I would keep a hairbrush by the side of my bed to scratch myself with, almost making myself bleed! Eventually I learnt to put my arms outside the covers and pull them down tight around me. But as you say, sometimes you just HAVE to itch!
Anyway its bed time for me but I hope to speak to you soon!
Ian

HI - I was glad to find this. I’ve been dealing with chronic urticaria since late 2002 and the only thing that has helped has been extremely short stings of Prednisone. Mine is caused mainly by stress, but finding ways to get my white blood cells to stop freaking out is a stressor in and of itself. My doctors weren’t too helpful or willing to begin with, and at this point, I’ve given up. I have trouble holding jobs and consequently insurance because of this illness. I’m glad to hear you’re on the way to recovery; I’m hoping for a small miracle for myself.

Hi, just read you website, and wonder if you could possible give me a little information. I have been fighting this since September last year, which is not long, but yet is a long time. I have gone to many doctors, tried all the antihistimines, contineing with Allerga, Singulair, and Tagament (which has a histimine blocker). But they only work somewhat. Today, my upper lip is swollen almost to my nose, and one eye is swollen shut….Could you give me more information about Dr. Kaplan. I would be willing to go to Charleston, if I thougt he could help…Thanks

Me, too. I have been to many doctors and told I would never find the cause for the chronic hives. I usually start in September, and yes it is september and I have started the hives and I go through the spring. No one understands the misery i have. I not only itch but the hives are painful. This has been going on for the past 3 or 4 years. thanks for sharing your misery. It helps to hear other stories.

Hi, I hope you get this, I’m not registered with TypeKey. Sorry to be so long with this. I know just how you feel and I am tired of it. I have had these stupid hives since Oct. 2001. At the beginning, people [50% of co-workers] thought I contracted Anthrax because of how the hives looked and how close we are to Ground Zero. They just appeared and have never left. I too am taking Zyrtec, Singular, doxipin and quite offen add in benadryl to help with the constant itch. I have a natural bath brush that I keep near my bed to scratch my entire body. The hives not only itch, they are painful. My fingers have been swollen so much that I can’t bend them and they have actually blistered, but when they come on the bottoms of you feet, that is really painful. Other people just don’t understand this. I have had allergic reactions to clarinex, atarax and allegra (common side effect : a rash or hives, that’s a joke). I am currently going thru another set of tests with new doctors. This time at Yale New Haven Hospital in CT. All this with little relief and following the same path as my local drs took; adjusting the meds, try changing you shampoo, laundry detergent, etc. I spent nearly 2 1/2 years on varing doses of prednisone and that only suppressed them for about 24 hrs and I would need to take the next dose of prednisone along with the other meds. I have found after eating wheat and gluten free for almost 6 mos, that I felt much better and the hives were less, but after an endoscopy, that was not actual problem. So out of frustration and hunger for good tasting foods, I went back to eating whatever and that caused them all to come back in furry. I am currently off prednisone but still taking all the other meds. In the last 6 mos I had to go to the ER twice for swelling in my tounge and airways and was given IV doses of a Steriods, Benadryl and adrenal. The ER doctor poo-poed me and said your airways are not swelling shut, you just thing so. Well, I know the difference; when no air is going in or out of your nose and the back of your tounge is hitting your teeth, it hurts to talk and your own silva hurts going down, there IS a problem ( I’d like to see his reaction in that positon). I am so happy to hear that I am not alone in this. I too have lost time from work because of how bad the hive were and/or facial swelling. Sometimes my eyebrows would be so swollen, I called them the Neanderthal eyebrows and didn’t want to be seen in public. At other times you feel like you could go out for Holloween with no makeup on and everyone would think you had a mask. I am going back to eating organic foods and I notice the difference in a short time. I have allergies to several antibiotics and other meds, so the organic stuff is better for me. I still have days when I say forget it, I’ll shop tomorrow because of how I look; I don’t want to go out in public. I would be interested in learning more about Dr. Kaplan. As I am writing this, I have a full break out of hives and they are starting in my esphogus (I’ll be taking prednisone tonight). I had take Xanax (?) before an MRI last night. I always have a nagging thought because I am sensitive to meds and other things, could these hives have started as a result of being down wind from NY. 3 of my friends (locally with 10 miles) all came down with the hives within the same 2 weeks that I did. I am the only one who still has them. Thanks for listening.

M

Hi! So sorry to read some of your stories! I am wondering if anyone has had medicine for 3-4 years and broke out real bad with hives for 6 weeks. Then it went away and started meds up again. Now 10 months later I’m breaking out again. Have you ever heard of a drug reacting this way. I can make sense of it happening all at once at the onsite of first taking the medicine. But not after years. My Dr. thinks that can happen. Sounds strange to me. Thanks for any help!

I too, have seen Dr. Kaplan in Charleston. He is a wonderful doctor who appears to have dedicated his life to helping patients. I have had chronic urticaria since 1991. Without many medications, I would be covered from head to toe in very large itchy and painful hives.
He conducted the IgE test on me and found that I am basically allergic to myself. I took 100mg of atarax for quite a while, along with prednisone, cyclosporin and many other drugs I was already taking. The addition of atarax helped for a while, but eventually I stopped taking it completely.
Several years ago, the doctor who manages my urticaria on a regular basis, tried to get plasmapheresis approved through my insurance company. It was denied. I now have different insurance, but have not tried to get coverage for this treatment.
I am thinking of a return visit to Dr. Kaplan. I do talk to him about once a year on the phone. I am really ready for a change in meds. At least I would like to be off of prednisone–too many side effects. At this point, I would not be able to function without it.
I am so glad you have gotten relief from your urticaria.
Janice

I also suffer from chronic urticaria. I have suffered for 20 years now. I have gone into remission twice which lasted for 2 years or lesss each time. I never fully understood why I went into remission. I began to break out again in March of 2004, the day before my wedding. Most people would say that it was my nerves but knowing my health history, chronic urticaria has no concern if you’re happy or stressed out. It attacks 24/7 365. This go around, I have become very proactive as to finding out why I break out. My allergist found no cause so I went to a Naturopath doctor who is also a doctor in Pharmacology. My thyroid test is on the low side which most doctors would not treat but this doctor is treating me with Westhroid. I, like most everyone has been on rounds of antibiotic treatment and prednisone use. I began to believe that I had systemic candida so I was tested and through a stool culture my test came back negative for candida but it came back positive for bacteria. I have an excess of enterobacter and citrobacter. I began taking herbs that were tested in the lab to kill the bacteria. The very first dose I took made a huge difference in the quantity of hives that appear each morning. I also get the swelling lips and swelling eyes and the intense itch that your skin is in pain and everything you touch is irritating to the skin. I do feel like this may be the answer to my problem. I also scored low to good bacteria. My protocal is to kill the bad bacteria, heal the leaky gut caused by the bacteria, and replace the good bacteria. I’m also eating a diet with hyposensitive foods which calmed my system down so that I could handle the healing time it will take to kill the bad bacteria. I’m still curious if I have systemic candida which I read is not always found in the stool so that’s not an accurate test. Women can have yeast in the urine so a urine test is a good measure and there is also a blood test that is 92% accurate for yeast. I plan on having these test just so I can rule out candida as a cause. Everyone, please don’t give up on finding a cause and a cure. There is hope out there. God Bless.

Hello All. I am suffereing very badly with this illness. I had it quite a few years ago and was clear of them for a good two years. I was off all meds. But they have returned and I can’t even explain the way I feel. How could this happen to me again? I am completely depressed and miserable. I don’t want to live my life like this.
These are the things I’m feeling. I have no one that understands what I’m going through. They tell me ‘It’ll be ok’, ‘It’ll get better’
or ‘Try not to think about it’. Try not to think about it? I look in the mirror everyday at these disgusting red blotchy hives all over my
body. My face blows up at least once a week (lips, eyelids, tongue) I feel them all over my body and am so uncomfortable and itchy and they
think it’s easy to forget about? It’s all I think about. I think I need to talk to someone whose going through what I am. Need know that
there are other people in this world that are going through what I am. I’ve tried so many variations of things. Maybe it could help someone
else here, but has not helped me. As of last week, I am taking 30mg of Zyrtec, 50mg of Doxepin (This med is mainly an anti-depressent but
has 2 histamine blockers in it), and Dapsone (This med is an anitbiotic used to treat leprosy. YUCK!) My hives have continuously
gotten worse. I was actually in the ER over the weekend I was blown up so bad. I was given Prednisone through and IV which made the hives
disappear within an hour. I was prescribed to take it orally (I feel I have no choice at this point). I’ve stopped the Dapsone because it
did absolutley nothing for me. As of last night, I’m on a new med called Cyclosporine. This med is an immunosupressive. Doc says it’s safe but my bloodwork will have to be watched every two weeks. Dr gave me an article on the study of this med for chronic urticaria. 2/3 patients treated with cyclosporine has either gone away or
reduced the urticaria. She says it should put the hives into a remission. I hope to god it works.

Hello. I just found this site after looking on the internet for the past week straight. I have had these same hives for approx.3 months now. I realize that it is nothing compared to the time frame as some other people that have posted, but I am miserable! I have had hives covering my body but they are just now starting to hit my face. This last week my lips and eyes have been so swollen I don’t even leave the house. It’s scary because I have a very intense job and can not just not show up because I have a an extremely swollen face. I have no clue what to do. My doctor doesn’t know the cause. I have tried all the allergy meds and am having no luck. As you have heard and experienced…nothing is working. Do you have any suggestions for me? I can not find anything I’m allergic to, so I don’t know what to do. Please help! Thank you so much! Angela

Posted by:
Angela
April 26, 2005 06:37 PM
Hello. I just found this site after looking on the internet for the past week straight. I have had these same hives for approx.3 months now. I realize that it is nothing compared to the time frame as some other people that have posted, but I am miserable! I have had hives covering my body but they are just now starting to hit my face. This last week my lips and eyes have been so swollen I don’t even leave the house. It’s scary because I have a very intense job and can not just not show up because I have a an extremely swollen face. I have no clue what to do. My doctor doesn’t know the cause. I have tried all the allergy meds and am having no luck. As you have heard and experienced…nothing is working. Do you have any suggestions for me? I can not find anything I’m allergic to, so I don’t know what to do. Please help! Thank you so much! Angela

Hello, I am so glad I have found your website. Its very kind of you to help people in this way. I am at my wits end and have been really tearfull and depressed recently. Finding this website has stopped me crying! I am a 26 year old Scottish female who has been suffering with what doctors have told me as Chronic Idiopathic Urticaria for three and a half years now. Recently the attacks have been particularly terrifying you see the kind of attack that I take seems different to that of other urticaria sufferers and looks quite different. I looked at your photos and have seen pictures of other people and my smptoms don’t look the same. I’ll go through what happens when I take an attack. They tend to happen every four to six weeks but sometimes I can take one then take another in a couple of days time. Before the really severe ones I have constipation and abdominal pain for about a week before it comes, coupled with my skin feeling soreish and burning little nips of pain darting all over my body. When the attack comes my hole body will start to feel burning hot inside and get hotter till it feels like I have been set on fire. My heart starts racing and it pounds that much I feel like its gonna come out of my head! The burning is coupled with pain and I am fire engine red from head to toe! I am desperately itchy from head to toe and take a hard bristled brush rubbing it itensely all over my body, which causes imense pain. This goes on for about forty minutes till the medication starts working. I take piritone, four or five depending onhow aggressive it is On the aggressive attacks I have feelings I can hardly describe. I have a burning itching feeling inside my vagina which is absolutely unbearable. The burning pain inside and on my skin is terrifying but I don’t have that desperate need to itch. Its too sore. Nowadays I am swelling more and more and I am finding it hard to breathe making me dizzy and faint. I feel there is something really wrong. The piritone takes 30 to 40 minutes to work. I then go into a zombie like state, feeling really cold and shivery because my body temperature has gone through the roof. It usually won’t happen again for another month. I The doctor has told me nothing but take piritone. They make me extremely drowsy for up to 24 hours after consumption. I drove for two hours to see a specialist and I was in his office less than five minutes to be told he didn’t have a clue what it was. I don’t seem to get what people describe as hives that exist for weeks but instead seem to get a more concentrated attack that can be cleared completely with my medication. When I took one on Saturday I felt like I was going to die which may sound stupid but thats how I felt. Then I took one in the early hours of this morning with the itching unbearable. More and more these white raised blotches of varying shapes and sizes appear where I’ve itched. Sorry for the length but I really need to talk to someone who knows more about this. Thankyou Denicex

Thank you so much for your wonderful website and the info. regarding to Dr. Allen Kaplan. I started with my breakout of hives 4.5 months ago. Like so many of you, I have been to the ER countless times, primary care physicians, allergist, dermatologist, etc. All lab work has ruled out an underlying medical problem such as hypothyroidism, Hepatitis, liver or kidney prolems, Lupus, Rheumatoid Arthritis, on and on. All allergy skin test come back negative. Meanwhile, I am taking Zyrtec at night/ Claratin during the day.
Has anyone else also experienced a TIGHTNESS in your esopahgus? I have to take Prilosec OTS every DAY or the tightness becomes as unbearable as the hives do when I miss a dose of my anitihistimines. HIVES/HEARTBURN? Is there a connection?
The good news is that I have an appointment scheduled with Dr. Kaplan in Charleston, SC next month. I can hardly wait to see him. Just the other day my family practice dr. said that “I would just have to grin and bear it” when it comes to these hives. Can you imagine the nerve?

My hives pop up all over my body, arms, buttucks, legs, face, neck, around my scalp, earlobes, eyes and lips swell. Once my blood pressure dropped to 80/60 and I felt faint, ER Visit they had to give me IVs and stated that I was dehydrated. So far, my airways have not closed up. THANK GOODNESS! But just living with these PAINFULLY, ITCHY hives has contibuted to the breakup with my boyfriend, cost many loss days of work, not to mention the $$$$ for all of the various ER visit, Dr. office visits, and numerous prescription drugs.

My theory is that since my hives broke out 3 weeks after my father died, that this was the TRIGGER that set into motion an autoimmune response. (I have had other unexplained skin problems in the past) In 1997, huge, large fluid-filled blisters appeared on my fACE. 7 skin biopsies later they still couldn’t tell me for certain what it was. Then they mysteriously disappeared.

WISH ME LUCK WITH DR> KAPLAN and thank you SO MUCH for your website.

KEEP THE FAITH EVERYBODY!!!!!!!!!! - Sara in Raleigh, NC

My husband has also been suffering for the past 5 months with chronic urticaria Can you give me the information for Dr. Kaplan

hi i need help with hives, i get them all over constantly, no doc are able to help. i think my anxiety/panic has to do with it. my life is gone. plzz help ty

I like the most of you have suffered a reoccurence. I first encountered this problem 5 years ago for about 7 months. It has been 9 months now. I have been on prednisone for the duration of the 9 months. The doctors can be so flipped when it comes to this condition because they probably have never had it. I am praying for each of you in that the Lord will deliver you from this condition and that you will be restored back to health. I have been blessed that it has been contained on my arms, buttocks (sometimes) and arms. I have had one on my ear and face but not continuously. I don’t know if you are a Christian or not but I would suggest to get to know who Christ is. He is the ultimate healer for your body and your soul. I am keeping the faith that this will be over soon. The Lord is in control of this condition. May all you be blessed!

Oh my goodness! Do you have any idea how long I have felt like a freak for having this disease? What am I thinking, of course you do. My first outbreak was in 2000 and it lasted for 7 months. They had me on so many drugs, prednisone being the main one, which was just a bandaid not a cure, that made me gain so much weight. I went to one specialist who suggested that I had Chronic Autoimmune Urticaria. His cure…diet. I told him I hadn’t been able to lose 10 pounds let alone the 55 he wanted me to in a yar. But I did it. I went on Weight Watchers and my hives were gone immediately!! I had been hive-free for the past 5 and a half years until a month ago. Now I have them just as bad. I am still down in weight (originally 215 back in 2000, and am 160 now) and eat generally healthy and it’s back. I am miserable. As a matter of fact, I stayed home from work today. I am a teacher, I can’t be gone this much. But my feet swell and hurt so bad to walk on, I can’t quit itching, and my fingers can barely move to type they are so swollen and my wrists hurt to bend. About a week ago I went to my doc and he put me on prednisone and atarax. However, once I got down to the day where I only took 3 preds, hives came back in full force. Finished out the preds, atarax isn’t touching it, can’t sleep…you all know the drill. I would really be interested in the info you have on this Dr. Kaplan. Even though I am in Michigan, it may well be worth it. Thanks.

I to have had hives for 9 years and have been on everything under the sun.My haves did go away for 2 years and then came back.Has anybody tryed the new shot xolair ? it is new on market and I have read that it is great for hives?

My name is Erin, and I wrote previously in your blog that I was suffering from chronic autoimmune urticaria. For some reason or another, I erased the email that you sent me giving me information on Dr. Kaplan. Could you please resend?
Thank you,
Erin

Wow! I am so not alone. I have no one to talk to about this, they blame your nerves. Good Lord after 2 tranquilizers there are no nerves but I still burn. I had just decided I wanted a specialist and wasn’t going to do the rounds with the doctors in this town and to see the name of someone is so helpful. Many a day I am afraid my tounge will swell and kill me. The pain is one thing the thought of dying so suddenly with a child still to care for is terrible. I am redoing my will since I still am afraid it could happen. Gee you think that might be the nervous problem. Sorry for the sarcasm but even on my best and happiest day this does not get better. I had taken trileptal for 3 days when this started. It should have stopped but it hasn’t. Previous letters explain the symptoms so I won’t repeat. I’m not sure if the med launched me over the side or what. Seeing all this info and maybe some new drugs for this has made my day. Thanks!!!

It was great to find your website. I’ve never met a single person with chronic urticaria like mine. I’ve suffered since I was 7 years old but it went away when I was 13 and only came back randomly and occasionally until I turned 18. I thought I’d grown out of it. It’s weird how it can just stop. Then it came back again, worse than ever! I too have had urgent situations where my tongue and throat have started to swell and they’ve had to inject me with that crap and stick a tube down my throat to ensure I don’t stop breathing. But what affects me the most is the lasting effects. They say it leaves no scars and maybe it doesn’t if you don’t itch but when you get it 24/7 365 in spite of medication, how do you stop the scratching. I constantly dra blood. I have scars all over my legs and arms. I swear I look self destructive but I can’t stop the itching. I try. I spend so much time trying but I can’t stop iT! Sorry needed to vent, thanks for the info, maybe i can get more help!!

Can I ever relate to all these posts. I have had chronic urticaria for 19 years. It first appeared during my freshman year in college and has been with me ever since. Initally, I has given atarax (hydroxynine)to treat my urticaria (hives). I soon as I took the medicine I felt the swelling and itching stop. After a while my system got used to the medication and it wouldn’t work, so the dosage had to be raised. Again, that worked for a while, but it no longer helps me. For the first 15 years is was semi-manageable. For the last three years it has gotten worst. Three allergy tests and 1 food allergy test later and I get the same response from doctors - sorry don’t know what’s wrong. Last thing I want to hear. I would be okay with the hives if they weren’t migratory. But since they are it definetly puts a damper on my life. I go to sleep, wake up, and I have new hives. It makes me grouchy, angry and irritated. Is it really that hard to treat? I am grateful for everyone’s post, because I thought I was the only one out there with this problem. I will be calling Dr. Kaplan and hopefully he can give my doctor an insight into how to treat my hives.

Thank You All Very Much!!!!

I just want to say that I read your story & also looked at all your pictures. I am so sorry for what you have had to go through.

I have an 11 year old who has been dealing with Chrnic Hives for 3 years now. I went a web site called Answers,Discover & Qestions to see if anyone could tell me anything that would help. One person taled about Dr Kaplan in Charleston SC. At frst, I did not give it much thought due to the fact that I live so far away. As time went on though more people talked about this Dr as being the most BRILLIANT Dr they have ever seen. I thought maybe should give him a call. The other day I decided to & guess what I have already talked to him twice & I am going to see him in March of 2007. I am so excited!!! When I read your story & you said how you went to him and he changed your life just as so many other people have said, I can’t wait to meet him!!!
I am glad to hear that you are dong much better. My daughter has looked like that from head to toe, fat lips, now swollen under her (just started happening) We went to many Dr’s here in California and got no answers other than she will have to out grow them.(Which is a Load of Crock) that is putting nicely!!!:) So, off to see the best of the best!! Wish us luck!! Good luck with further of your condition!! Hope that things stay well for you!!

Tiffany “2007″

After 3 years, with a 7 month reprieve in the middle for unknown reason, I have finally incorporated the intense itching into my life. What I have not been able to tolerate is when my face is involved (and feels as if I have been injected with Xylocaine,) my larynx feels swollen causing a hoarsness, and my esophagus feels swollen causing pain and pressure. I am currently on Atarax, which was effective at first but not so much anymore, Zantac for its H2 antihistamine properties, and Allegra. So far, not much relief after trying several combinations of things, and I’ve had to resort to Prednisone bursts on occasion.
Something else I have noticed is an emotional change (besides discouragement) in that I now have low tolerance for anything unexpected—even good unexpected things. I suppose this is because it takes all of my energy just to make it through each day trying to cope, so I find that I need to have a very structured life.
I found this blog a few days ago, and just reading about the experiences of others has helped me psychologically, so thank-you.

My hives are not nearly as bad as yours… and I feel for you as I itch. I itch everything… my scalp, behind my ears, in my ears, my ankles, my legs, my thighs… etc… and I have only had it for three months. But no doctor has yet to use the word hives or uticaria with me… but I have been researching it, and I have all the symptoms. Seeing your pictures absolutely confirmed it. We have matching legs, and my stomach looks like your back. I’m glad you’ve found something that works Now that I’ve diagnosed myself,I hope I can too!

By the way… before you had an outbreak, did your skin tingle or feel like it was falling asleep?

Hi Meredith,

I was doing some research today on urticaria as I’ve had the disease since 1999 (same as you, I think). I also see Dr. Kaplan in SC and he was able to get me off the steroids I had been taking for 4 1/2 years. You heard me right…4 and a half miserable years. I can’t tell you the amount of weight I gained.

Anyway, I thought I’d share my ‘prescription coctail’ with everyone since I am taking a drug that is not yet listed here. I take 250mg of Atarax daily (one in morning, noon, evening and 2 at bed time), Allegra 180 once a day, 20mg of Accolate twice a day and then I take 200mg of Plaquenil twice a day. Here’s the definition of that one:

Plaquenil is prescribed for the prevention and treatment of certain forms of malaria.

Plaquenil is also used to treat the symptoms of rheumatoid arthritis such as swelling, inflammation, stiffness, and joint pain. It is also prescribed for lupus erythematosus, a chronic inflammation of the connective tissue.

I as actually seeing Dr. Fox in the Tampa area and he started me on that. Dr. Kaplan has continued to prescribe it along with my other meds.

I share everyone’s sentiments here. Hive really do stink. I get tired of people looking at me like I’m crazy when I’m home sick becase, “I have hives.” It just doesn’t sound as bad as it really is. Heh.

I’ve never been lucky enough to really be in remission. I tend to have at least a few hives every day. And if I miss my meds..Oh boy! They come out with a vengence. I’ll be happy with the darn things just go away completely.

Best of luck to everyone with their treatment.

Respectfully,
Debi

To be honest I am not hive-free right now either! I was okay for a few years but I have been getting progressively worse for the past many months. I have another appointment to see Dr. Kaplan on July 26th and I am really looking forward to it. I have been self-medicating periodically with prednisone…I know I shouldn’t but my main doctor has no clue about chronic urticaria and it’s the only thing keeping me sane.

Thanks for the info on Plaquenil! Maybe that is a new one Dr. Kaplan will try me on. That’s why I’m going to see him…my cocktail has not been working so I’m hoping he will have something new.

I would appreciate Dr. Kaplan’s contact information. Do you think he will help me if I cannot travel to SC? I am the primary caregiver for my three children and cannot take many of the drugs listed because of the sedative effects. I am suffering and need help. I have had 5-6 outbreaks of chronic hives on the past 20 years. I need to know the latest information. Thanks.

Hey Jody! If you still need Dr. K’s info I’ve posted the info below. I know he does still work with people even if they cannot travel to SC.

National Allergy, Asthma, & Urticaria Centers of Charleston, P.A.

Trident office - (843) 797-8162
Downtown office - (843) 577-3342
East Cooper office - (843) 971-0139
West Ashley office - (843) 573-9373

hi there….i have been searching for an answer to what i have it started about three months ago..ive been to dermatologists, specialist , natropaths ,doctor, ,hospital like 26 times…. i dont know if this is what i have but it sounds very similar….my doctor has tested me for lupus, among other things and everything comes back fine…which i wish it wouldnt cause i just want an answer….my whole body itches constantly, my face randomly swells sooooo bad that my eyes are swollen shut and my forehead is huge…my face feels soooooo tight and hot! and i havent seen anyone mention this but my facec leaks….crazy right its like water then it dries and gets all crust i leak from my head my ears my nose..everything then i have blothchy welts were it leaks from…… so if anyone has had a similar reaction please let me know….i own my own business and there are weeks were i have to miss two or three days ..i cant do this anymore i dont know what to do for help…the only thing that works is prednesone and once im off it it starts again!!! i can fell it comming on about two days before the swelling cause my skin gets really dry..it flakes right off…….please HELP….amanda

Hi-I’ve had this for about three years now. Prior to onset, I led a pretty active life. No more, as you all know. In addition to the welts and hives, I get real achey in my joints that are near the hives. Any kind of exercise is out of the question, as my joints can’t take it. Sleeping is even difficult, as I wake-up stiff and sore. Does anyone else have a lot of pain, in addition to the itching?
Pam

Hi to all. wow read this!! i know your PAIN i was the same way!!couldnt leave the house it was awfulllll went to a ton of docs. they couldnt figure out what was wrong?? but like some of you i am now freeeeeeeeee . yes i take Atarak.. 100 mlg a day and i also take Tagament 150 a day . i am freeeeeeeeeeee !! thank you for posting this. i never thought that this many people had the same kind of skin issue

not alone anymore

Shannon…………..

Aloha,
My name is Marc and I live on Maui in Hawaii. I have been dealing with chronic Angioedema/Urticaria for 12 years. As many of you, I have experienced the absolute deflation of my spirit and will to live during severe outbreaks. I am wondering as I type, is this condition more common in woman. I noticed only one or two other guys, and if so, I wonder what the correlation is. My reaction started after i took a broad spectrum antibiotic (Keflex) the reactions began and then quelled…a week later after having been on eurythromycin (knee infection) the hives and Angioedema began again. They really haven’t stopped. Zyrtec worked well for about 8 or so years and i have been off it for about one year and primarily take a low dosage of atarax and only on occaision (after much contemplation) will take prednisone if I cannot “calm things down.” Because of this condition..I know live a very (sometimes dull) “safe” life. I have to be very careful about whatever I take in whetther it be food, the activities I do or the comapnay I keep.. I do not drink, smoke, stay up late. I have gotten, at times extremely depressed as this condition feels as though, if I do live my live in alignment with the free spirit that I am, it is like I will get “whacked” by hives or swelling. Strangely, my hives don’t really itch. They do however, when the get large, hurt. I have had my entire leg and buttocks be covered with a thick, hot, leathery, hive that is painful like glass cutting into me. One thing that really helps the swelling go down is to run. Running circulates the excess fluid and helps to reduce the damage of the attack. I am thankful that there are medications to help us, but my goal is to get back to balance with no chemical dependency. Thoug I have concern over the long term chemical effects, i would rather live ten years happy & hive free than twenty suffering. I am wondering too, when I got my outbreak the first time, I was experiencing an amazing amount of grief. What was the state you were at emotionally, physically..etc. I am interested and wondering if there might be some energetic pattern I got stuck in and now my body is locked on it. I find that this condition requires me to have incredible awareness and strike an very refined balance in the ways I participate in life. But I want my freedom back…12 years of this prison is too long. I also would like to get Dr. Kaplan’s Info. It would be a miralcle to no longer suffer from this macabre and bullying condition. i thank you for you site and wish you freedom from this.

I have had hives since August 9,007. They first appeared on my chest and are now everywhere despite steriods and a long list of antihistamines. I have all of the same symptoms you describe as well as looking exactly like your pictures. Since Dr. Kaplan is retiring, who will be replacing him and who will be treating you? What blood test should I ask for to determine if I am allergic to my IgE? Thank you.

Jocelyn

HELLO,I BEEN SUFFERING FROM URTICARIA FOR A WHILE NOW,TO THE POINT I CAN’T SLEEP DUE TO THE ITCHING,NOTHING WORKS I’M TAKING ZYRTEC AND BENADRYL FOR OVER A MONTH NOW AND THE ITCH DON’T STOP.I FILL SO MISERABLE!!!! IT SOMETHING CAN HELP:( BUT NOTHING SEEM TO HELP,PLEASE,PLEASE LET ME KNOW IF YOU KNOW ABOUT ANY NEW DRUGS TO HELP THIS HORRIBLE URTICARIA,IN THE MEAN TIME I WILL KEEP SUFFERING WITH THIS UNCONTROLLABLE ITCHING.”GOD HELP US ALL”

I”m Casey and I’ve been having the same thing all of you have. Again, the itching/swelling is one thing but to me the intense sever ache after they subside is the thing that is keeping me up and making me want to cut my arm off. normal pain meds don’t work for it either. Here’s my delima, I’m 7 weeks pregnant. Zyrtec is fine to take, but I’m having to double up in order to keep the hives away and I really don’t want to do that. Has anyone thought it might be related to a yeast infection in your body?? being pregnant, it got me on the subject and I found that it can cause hives.
I’m going to try to get into an OB/GYN this week. Anyone else gone through pregnancy with hives like this?

Hi there,
I empathize with you as I have been there, done that. Dr. Kaplan was in NY approx 11 or 12 yrs. ago when I had my first battle with hives. YOU ARE INCREADIBLY STRONG and don’t let anyone tell you otherwise, ever. It really is an unbelievable challenge living with hives, checking out certainly seemed easier to me however I had two children so it wasn’t an option. The challenge of living with hives is only understood by one who has been there. Unfortunately after the year on high doses of steroids mine came back approx. five years later and now again approx. another five years later. Perhaps I will have to see Dr. Kaplan again!! However, it’s a trek for me from NY, he took all of his studies and most of his staff with him!! I’m glad I found your page in my search for a link between viruses and hives. Let me know how you are currently doing.
Sincerely,
Arlene
ps Just noticed a post - when is Dr. Kaplan retiring??

Hi Casey,

Yes, I am 12 weeks pregnant today and am battling chronic hives. I had them for 11 months in 2001 and they have been in remission. They returned the day I found out I was pregnant. I’m working on revisiting the old doctors that I saw back in 2001 as my OB has no experience with anyone in this situation. I’m currently on Xyzal and don’t see that it is helping at all. Give me an update on where you stand and what the doctors have told you.

Thanks, Meredith

I have stumbled on this thread searching the net for answers. My life has been taken over for 3 weeks and I am exhausted, fed up and afraid. Ii started with a bit of chest pain, sharp stabbing pains and an intense burning. It woke me up in the night and went off after an hour or so and happened again the next day at work for 2 hours. The following day the hives came. There was a huge patch of them on my right side ribs, back and abdomnen. I showed my collegue and we laughed thinking it was an allergy to the new top I was wearing. By the time I had driven home they had spread up my face and neck. I took a bath and had some claraytin antihistamine and it seemed to fade. The next day at work I had the chest pain again, I joked with my collegues that I was a super hypochondriac and it was probably anxiety. By Sunday afternoon the pain had returned with a vengence, I still had hives on legs, arms and body and a bit on face, but it was the chest pain that worried me. After the usual medications for indegestion failed I finally went to accident and emergency thinking I was having some kind of heart problem.

They did my bloods and an ecg on my heart and told me everything was fibne, they said it was just heartburn and that the rash was unrelated and to take gaviscon and piriton antihistamine. It was around 4am in the morning when I got home due to the wait in A and E, so off to bed I went.

When I woke up I was covered in hives still. I spent the entire day virtually taking gavison and piriton and nothing changed. At one point I was doubled up in tears with the pain. The hives were so bad they were in my scalp, there was not a part of me that was not covered and the little hives joined up to make enormous big ones, they were over my eyes and could feel them in my throat. I tried to hold on thinking I did not want to bother A and E for nothing but when my lips swelled up I was to scared to leave it and the pain was incredible. I went to the emergency doctors for help and he said that it was a severe allergic reaction and again that the pain was heartburn, he said I shouldnt have gone there but to A and E, but he injected me with piriton and gave me high dose steroids (peridsone) to take straight away, he said to continue with piriton and gavison also. Within an hour or so of steroids and no stomach medicine the pain had dissappeared and the hives were reducing. I stayed at my parents house that night and by morning the hives were virtually gone, except a few on my legs.

The doctor had also prescribed me the steroids to take over 3 days. I took the second dose about 5 hours after the first dose due to the time I went to docs (again early hours of morning) and the fact that he told me to take them in the morning again.

I had almost a free day but then by 6ish the hives returned with avengence as did the pain. This time the pain was in my stomach as well as hands and I felt like someone had kicked me in the kidnies they throbbed so much. I tried calamine lotion and sitting naked with a fan as I believe heat makes them worse but it was no use. I again went to the emergency doctors and had to wait nearly 2 hours to be seen as the surgery was busy. The emergency doctor took one look at me and paled, I had not seen myself for 2 hours so I must have looked bad. He looked down my throat, listened to my breathing and felt all around my stomach. He rang A and E and told me to get there right away.

When I arrived at A and E they took my name and put me straight through triage, when they were taking my blood pressure the alarm on the machine went off as it was dangerously high or low they never said which way just that it was bad and they rushed me straight through to the back. The nurse there took my bloods etc and told me that they believed my kidnies were failing and that the rash and pain was caused by a build up of toxins in my blood. As I have duplicated kidnies that I was born with and suffer reoccuring kidney infections it made sense to me that this was the cause and I actually thought I was going to die.

Fourtunately the blood tests showed my kidney function 100 per cent and although I had a temperature and apparantly a high level of white blood cells in my blood there was no sign of a virus or anything else. The doctor decided to keep me in overnight due to the severity of my attack and gave me steroids and antihistamines via IV. After 30 minutes of the first IV the pain went and after the 2nd lot the hives started to clear. I was seen by another 3 doctors throughout the night who said really it is not an A and E issue unless I cant breath. I told them the doctor sent me up, I was in agony and I was not prepared to stop breathing before I sought medical attention. They didnt seem to know about my blood pressure issue and said that the pain was simply heartburn due to stress of rash. I explained that at 30, after childbirth and various injuries I know the diffrnce between heartburn and pain that has you doubled over in tears and if it was stress why did pain come before the rash and why did steroids/antihistamines clear pain but not gaviscon. They had no answers and made me feel like a nuisance.

They refered me upon leaving in the morning straight to an emergency appointment with a dermatologist. She was very concerned about the symptoms I described and diagnosed me with choronic urtacaria/angiodma but said that she had never heard of getting any chest/stomach pain with it. She told me to stop the steroids and to take 2 lots of antihistamines that she prescribed, one for night and one for day. She said they are strong and will make me sleeply.

For 2 days I had normality again other then a few hives coming and going on my arms and legs. Then the pain started again in my stomach. I went shopping with my daughter and felt so weak I thought I would faint. I did not want to go back to A and E as they made me feel like I was wasting thir time. By Sunday afternoon the hives were bad, although not as bad as before and the pain was incredible, again in my chest as well as stomach.

I went back to A and E and saw a doctor who was very thorough. He said he had expirienced severe allergy himself but my case was very unusual. He said it was like a severe food allergy except I di not vomit or have diarohea so it made no sense. he said thet my stomach was very swollen inside and the passages up to my chest which was part of the allergy and causing the pain. He said he thought I may be auto immune as there was no pattern to my reactions, eg food patterns, drug patterns, or any allergen exposure. He said Im high risk of auto immune disorders as I am female in child bearing years.He prescrimed omaprazole 40mg for controlling acid reflux in stomach, codeine and buxapan for cramps.

The next day I was doubled in agony again, the meds took it off after an hour or so.

The hives came back that night, I slept and woke up feeling really strange, in pain, groggy, and absolutley covered in hives, my lips were swollen huge andI had this weird burning pain in my hands and arms. I felt like I had a lump in my throat. I drove back to A and E and this time as they were taking my blood pressure my hands went blue, the nurse was worried and got the doc who happened to be one I had seen before. He said my hands were very congested and agian went through the pattern, foods I had eaten, meds I was on (none before this) etc. He said I do not know what to do, none of the docs know what to do we do not understand, he said I need refereal to immunologist and he conslted a dermatologist who did not see me but told him that they should double my antihistamine doses and change the omaprazole to another stomach med.

I collected all the meds from the chemist, she said the doses they had me on go against manufacturers guidelines and that any weird affects I should seek medical advice. She said I would be lucky to stay awake.

My GP has prescribed eppi pen for emergency and says she does not know what is wrong with me and I have kept food diary etc and has rushed through emergency appointment with immunologist due to the fact they are running out of meds to give me.

I see immunologist on Monday and so far so good with meds, I am doped up and get twinges but look normal and am not in agony. One weird thing is that the hives on my shins left me with bruises. My life is over ruled with this now, it is so good to talk to other people affected, does anyone else get chest/stomach pain???

HI I used to get stomach pain or gripes as I call them the pain is terrible and even after going through it a few times always manage to scare the sh1t out of me. It is the only pain other than breaking bones that I have ever experienced where I could not keep from moaning. I am unresponsive to all the drugs I have ever been prescribed and have found a restricted diet and life the only things that have ever helped me. I hope your urticaria calms down and especially your cramps. In my case although my CU is debilitating stopping me from working regulary and doing what all my freinds do without thought it has become less extreme.

Hi Everyone,

So 30 years of chronic angiodema without Urticaria. Years ago Dr. Kaplan wrote back and I got on Benedryl, which helped. From about 1998-recently I had it largely under control with Claritin and prednisone (about 1-2x per month) for breakouts. Now, for whatever reason, I’m getting 2-3 per week. Face, tongue, hand, etc. Painful, and I feel like train wreck for about 6 hours. I’ve started Zyrtec and Zantac - to try to avoid prednisone 6-7x per month .. but no luck so far. Heading to a specialist at UPenn — so any tips on what to ask or tell them is welcome. I just wonder why after nearly a decade the “chronic” element has returned with a vengeance. FYI I’m a 49 year old male. All the earlier tests (C1, Thyroid, Lupus, allergy testing) came back negative. Getting a bunch of new one’s done now.

Jim

My 28 yr old son has been sufferring from chronic hives as well… Has tried everything…but can never give up the prednisone..just like everyone else. Currently given cyclosporin but needs the prednisone his MD wants him off the steroids…but they just don’t understand…that he has to go to work and can’t take off for all these MD visits…especailly when nothing is helping. Is Kaplan still in practice? Who could his dermatologist call for suggestions with new treatments… somethings just got to work…this time he’s had the hives for over a year…put on so much weight and emotionally it is draining him….Please help…..thank you

Hi;my name is Letitia. Im 20 years old. I have had chronic urticaria for 10 months now. Im still quite new to it. The hives really do get me down. Sometimes i get so depressed. And the itch is tormenting and uncontrollable.
I hope all of you who have this condition will have the strenght to cope. GOD BLESS..