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Hello all,
I was diagnosed with this in 1996, at age 18, after 2 years.
I had just started an apprenticeship in the printing trade, and initially I was affected by just the pads of my feet and hands/fingers swelling, itching and burning after continued standing/impact.
I went back and forth to the Doctor, trying various creams etc, none of which helped. I also got the impression that they thought I was wasting their time, which compounded my frustration.
Eventually they sent me to see a consultant, who said quite bluntly "there's no cure, you'll have to live with it" after explaining my problem.
13 years on, my symptoms have now altered slightly, in that my feet are no longer as sensitive (they still swell if I "perch" on anything), my hands swell up after impact (using tools etc), I have started to get swelling from tight clothes, and wierdly, below my left armpit and on the back of my neck!!
I am wondering if there could be a link to either the Jaundice I had at birth, or the Glandular Fever that I had in my teens.
Merry Christmas!!
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I have had this for about 4 years. Terrible, debilitating pain, swelling, occasional itching, wheals, etc. I am now 40 and I carry a cane with me just in case. I try to avoid activities that cause the problems but, like others, repetetive motion brings it out... hand tools are out, sitting or standing in one position is out, I can't physicially maintain anything without swelling up. This is an awful disease. I've seen 15 doctors and none have come up with a solution. They found celiac disease (gluten free for 3 years now) but that has made absolutely no impact. In fact I often wonder if I really have celiac at all or did they just observe hives on my intestinal walls... I've gone to the head of gastroenterology at FAHC in Burlington, VT and I've been evaluated by the head of the celiac group at Beth Israel in Boston, MA. I work in radiology and have access to doctors all the time... they all agree that I am my own best doctor at this point. The best treatment I've found is to take a small amount of prednisone before doing any activity (usually 5 to 10mg depending on the activity). I can get away with this for a day or two.... it gets rid of the pressure urticaria but the common hives are constant and consistent every day. I've ruled out every possible thing in my life aside from moving to a new house (and who can afford that these days). I would welcome emails and comments. If enough of us out there get the word to someone maybe they'll start trying to find a cure. I hate to say it but we need someone high up in politics or a big name celebrity to suffer from the same thing before we can expect to have anything change in the medical field surrounding this problem.... I'm being cynical again... sorry.
Anyway... Add me to the list of people with this problem and please let me know if any of your doctors ever find something out.
Thanks...
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Hi All. This is really a response to manualworker but I would like to open the question to anyone on here. I've been searching for potential causes of DPU. Manualworker noted that they were born jaundiced. I too was born jaundiced. Anyone else on here?? I received a smallpox vaccination a few years ago and thought that might have caused it. I have been suffering from DPU for about 2 years now. When it started it really wasn't that bad then it just got worse and worse. I've even had my chest cavity swell after my 2 year old niece stood on top of me. A few hours later I could barely breathe. I haven't had a hive-free day since they started. My hands, feet, lips and tongue will swell. I get hives and swellings all over my body that are painful, hot to the touch and seem to penetrate deep into my muscle. If I have a really bad breakout I end up with a low-grade fever, low energy level and I become a little disoriented/easily confused. I've been put on every antihistamine under the sun and none of them seem to work for me. I still take zyrtec every day because it seems to help with the itchiness. I just recently started eating raw in the hopes that it would clear up my condition. I'll let you all know if I see any improvements.
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hi all,

recently I've got mine dpu and now dealing with it. I'm 32, male and it started with extremely swollen hands after caring heavy bags.
I'm taking various medications - most of them with no benefit. I'm starting ketotifen now, will inform you later. Beside ketotifen I usually take prednisone once on every 2-3 days. I felt better with shot of depo steroids called diprofos - was free of symptoms for abt 20 days.
I've gone true whatever investigation you might think and everything was normal or on borderline.

Do you know anybody cured from this condition.
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I endured DPU for over 22 years. I am female, 49 years old and just over a year ago (post-Thanksgiving 2007), the hives just stopped. I engaged in several sure-fire activities (that would always raise hives) and no reactions. After meeting with my dermatologist and under his guidance, I weaned myself off the morning Ranitidine and evening doxepin that I had been taking all those years, in about a week. I was overjoyed! It was amazing to not get those hives, no matter what I did.

About 2 months ago (almost exactly 1 year later), the DPU has returned. To say I was devastated isn't enough. They don't seem to be quite as severe and I'm trying to get along without going back on the meds. I have no clues as to why it suddenly stopped or why it suddenly started again.
Has anyone else experienced this?

Thanks.
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Last wrote on 18 November 2008. Wanted to update you.

Per all of your advice, I stopped taking aspirin daily. Then went to an Allergist. She was not familiar with DPU - but she immediately explained the purpose and effectiveness of all the recommended drugs and drug combinations from this web site.. She gave me a higher strength prescription topical cream, generic Zyrtec (10 mg) and a prescription for prednisone "just incase you have a bad attack while you are away from home on a business trip".

The Zyrtec at 10 mg was too strong as I was very groggy for 12 hours - but 5 mg taken immediately before or after physical exertion and use of tools helped a lot. The creams let me sleep without itching.

I had one new experience. I was stripping and waxing a large old vinyl floor and was on my hands and knees for 2 hours with knee pads on. Sure as you know what, 4 hours later my knees became swollen, red itchy, stiff and very sore. That evening I experienced the fever, chills, watery eyes, runny congested nose and onset of coughing that some of you reported.. I thought I had contracted influenza. By the next morning (and using the Zyrtec) all syoptoms were gone.

This is a strange and scary ailment.
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Oh, it's so nice to find recent discussion about DPU.

I got it when I was about 17 or 18, and I'm 28 now. I still have it. It's horrible. I would kill to play a game of football and not be bedridden for a day afterward.

I won't bother posting my stories, but I will post a lot of personal info about myself. I would encourage anyone after me to do the same thing.... if we can find something in common, we may be able to find what causes DPU.

Born with double hernia
Right about the time I got DPU, I put on a bit of weight
I'm currently 5'11" / 240lbs (pretty overweight, I'll say it)
My skin gets itchy a lot (mostly the back of my legs)
I have dry skin
Dandruff unless I use selsum blue medicated (highly recommended btw)
I've been bitten by 2 spiders in the last several years, probably unrelated
Had a root canal at age 13 or so
Had another last year
I'm allergic to my cat and very allergic to most dogs
I'm allergic to oak tree pollen


That's all I can think of... anyone else?
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To all those DPU sufferers out there - it sucks! I'm 37 now and have had DPU for 10 years. Like most DPU victims, i'm self diagnosed. The first two years I went from one doc to the next and put on every kind of steroid, antihistimine, and anti-depressant you can name. Over time the symptoms have either diminished slightly or I have just gotten used to them. I will tell you that the best thing that helps the symptoms is the last thing that many of us would actually want to do - exercise!. I have found that the more I exercise, the less symptoms I have overall. For example...if you would have asked me to to push ups a year ago with no prior exercise routine...I would have had severely swollen hands and toes about 4 hours later. Today, I do push ups every day and no swelling. Now...ask me to do something different...say paint the base boards...my knees will still swell up like you wouldn't believe. Another example was golfing. If I only play golf once in a blue moon, my hands are sure to swell up. If I play every two or three days, my hands do fine. I guess my point is - the more active and physical you are, the more likely you can do routine stuff without getting DPU.

I haven't taken any regular medication for my DPU for 8 yrs now. When I do something that is out of the ordinary and expect some DPU symptoms, I take naproxin. It seems to help the symptoms and relieves the pain of that really deep DPU you get in your muscles (the kind that causes you to run a fever). The other thing that absolutely kills the pain and helps you sleep is alcohol...and not the rubbing kind. A good jack and coke, or two, or three, will definitely get you over the hump. Just don't drink so much that you get a hangover that is worse than the DPU.

Good luck to all of you, and pray (that works good too).
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Hello all,

I developed this condition suddenly and severely about a year ago. I could go on describing for pages the various ways it manifests, the uncontrolled misery it creates and the lack of any truly effective treatment but I think that has already been covered here in great detail.

Because my onset was so sudden I am guessing it was caused by one of three things which immediately preceded it:

- root canal/crown dental work requiring repeated visits - the chemicals used are very powerful and may heavily impact those with sensitive immune systems

- a flu shot ... viruses have been implicated as a cause of DPU

- a very stressful life event .... uncontrolled stress will definitely make this condition worse


More broadly, I also have a history of sensivity to various things such as medications and a life long history of allergies. I also have a tendency toward an anxious personality.

Treatment: I've been to several doctors who have tried many medications. Nothing has helped. I can say for certain is that alcohol seems to either bring on the condition and/or make it worse. Also, ibuprofen WILL make the condition worse. Use tylenol for pain if your doctor allows it.

More info.... I also get vibratory angioedema of the hands. This is caused by using vibrating power tools. This condition came on at the same time as DPU and I think it may be closely related to DPU. Orthopedists ran nerve conduction studes and concluded I had carpal tunnel syndrome. They suggested immediate surgery but did not understand that this vibratory angioedema can cause temporary nerve impingement. Needless to say I cancelled the surgery.

Moving on...

In my research I've found that many researchers consider DPU some sort of autoimmune disorder though no test will confirm it. Of what value this is to you I don't know but keep this in mind as you search for clues.

To all suffering with this condition you have my sympathy. Your condition is serious and truly disabling but hard for others to understand. Only those who have lived it can realize the devastation to a normal life style it causes. I've read in medical literature that the only lasting effects are anxiety and depression.

But keep your head up and NEVER give up the search for a cause or cure. I research constantly and will share any meaningful news the moment I find it.

God bless you all.
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Hey Everyone! I have had DPU for 5yrs now. Im 26yrs old. This site seems to be a great resource for all of us suffering from DPU. It looks like regular physical activity helped and Zyrtec on a regular basis subsided my swelling.

About 8 months ago i took an over the counter cleanser at GNC! NIACIN 250mg! I took it for 3 days in a row and detoxed my body. And it took about 6 months before i felt Very Small symptoms of DPU in my figures. Since that time i have only experienced DPU on the rarest occasions.

It doesn't look like a cure all, but since i can run for miles, lift weights and all the regular things i enjoy, Id recommend it. Check it out people!
Reply and let me know if it helped you!
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Hello. I'v had disabeling condition since I was about 17 years old. Im now 37. Thats about 20 years.

Well, two years ago it got so bad I was hospitalized and a team of doctors run several blood test and physical test just to confirm my condition and exclude anything else. Anyway, after some days they started me on a antihistamin treatment with Telfast (180mg) and Cetrizine (10 mg) wich I was to take two times a day every day weither I had hives/swelling or not.

The thing that suprized me is they said It would take up to 8 months for the treatment to take full effect. Meaning I would get no immidiate relief from the antihistamins.

Like a questions mark I wondered why didn't any of the previous "skin" doctors I went to the last 20 years tell me this ?
Nobody told me I had to take antihistamins preventive. This could have saved me 20 year of agony and pain.

On the bright side, after going on this antihistamin combination, I actually started feeling the results after 8 months just as the hospital doctors said.

I'v not had major hives, rash or sweling for a year now and can live pretty normal. I occationally get some small rash lesion but nothing disabeling or something I lose sleep over.

Two times a year I go to the hospital for control. The hope is to gradually step down on the antihistamin and finally stop using them, but the doctors says many times pacients
has to keep on taking antihistamin every day for the rest of their lives. Personally I'll rather do that than to live with cronic pain from hives and swelings in the skin.

Even though antihistamins does not cure the reason for delayed pressure urticaria it can take way the disabeling effects. Reguarding this condition the general consensus among treating doctors is to take away the effects since the cause is unknown. They say the cause could be different for each pacient, and most times they can't find a cause.

Hope this helps anyone that still is pestered with this condition.
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Hello. I'm from Texas. I'm 36 and got urticaria and DPU in Aug of 2003. I've been thru bad and good. Right now I'm finally off of everything. It sucks as its limits my ability to do things that I used too. I feel your pain. I just started herbal medicine from India. I'd like to talk with you. I've never know anyone with this stuff.

Later, Joey
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I have a new "pattern" of reactions.

I have now had two episodes where I was doing fairly heavy work where I had to be on my knees for 1 to 2 hours. In both instances I got swollen, red, sore, itchy knees and knee stiffness. Both of these episodes were followed 4 hours later by the "flu like" symptoms. I had a slight fever, chills, watery eyes, runny nose, cough, nasal congestion.

While I have had DPU reactions all over my body to all kinds of physical work, clothing, etc, the only time I get the flu like reaction is when I get DPU on my knees. Its as if the knee DPU triggers the flu-like reaction.

Does anyone have any insights on this type of 1-2 reaction to a specific stress?
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I am 47 years old and have been suffering the effects of DPU for 17 years.
Like most DPU sufferers I was initially diagnosed with alergic reaction and given various antihistamines then finally, when no relief was achieved. prednisone(steroid). Many doctors and so-called specialists have been visited in the hope that one day someone would recognise what the hell was happening to me. After about 5 years I was given the diagnosis of CIU but only through reading other peoples experiences has it been re-classified as DPU with CIU episodes. I know all of you will agree that the years wasted seeking a cure or at least an effective treatment that will not have devastating long term effects, feel like lost years. Years of missing my children grow up. Not noticing the little things because I was so focussed on getting through each day without looking like the 'Elephant Man' that i would avoid activities that would increase the likelyhood of an attack. Years of not be able to wear fashionable, age-appropriate clothes and opting for loose old-lady clothes so as not to aggrivate the condition and general lack of interest in life which I now recognise as depression.
I look back on the last 17 years with such regret that it causes me actual physical pain. The frustration of people not understanding the weight gain (steriods) the inactivity, swollen facial features etc...cause deep-rooted depression in DPU sufferers, a sympton to readily dismissed by the medical profession. I am about to start on yet another DPU journey and have found a doctor who is trialling me on Plaquenil. i will keep you all up to date on any outcome. Thank you to all you beautiful souls who have opened up your minds and hearts and shared your experiences of DPU. No matter how slight or how severe, they are a real issue in YOUR life, and don't ever feel bad about feeling a little sorry for yourself. It takes a lot of guts for some of us to get up each day and face the world with any possitivity with all the fears and uncertainties of what the day will bring. We are our own managers with this condition. The only way you are going to improve your situation (which is a little different for every one of us) is by being tennacious and never taking no for an answer. An answer will be found. Good luck to you all
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I wonder what % of us consume alcohol?
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