hi dylan
have you tried going gluten free?
Thank you everyone for your helpful suggestions and comments. I too went from doctor to doctor for several years before a determatologist actually took time to listen, took my charts home with her, and diagnosed me with DPU. I have very adverse reations to beer and ibuprofen, soI'm thinking I may try a gluten free diet for a while and see if that helps. I also have found that if my body "gets used to" a certain kind of pressure, sypmtoms in that area subside but it has to be daily exposure. I take 2 aller-tec (costco's brand of zyrtec in the morning and typically a benedryl or two at night, though taking 2 makes me drowsy the next day.
I've seen a lot of comments about autoimmune...my dad had very bad rhuematoid arthritis and I just have to wonder if this is somehow genetically based. Has anyone had luck with immunotherapy of any kind and if so what kind of docotor did you see to get help? Forutnately my symptoms are not as debilitating as some on this post, but I would say they are moderate to severe and are defiinitely having an impact on my quality of life.
I was a very active child and teenager, playing various sports regularly - never causing me a problem.
My symptoms started to show themselves approx 6 months after I started as an apprentice bookbinder, particularly the soles of my feet and the pads of my hands and fingers, which would swell, burn and itch to the point i would sit on a pallet, unable to walk, let alone complete any work.
Various trips to the doctor offered no relief, or answers (other than change your job), until I was referred to a Dermatologist who provided the diagnosis and little else....stating there was no cure, and no hope of a cure (unless found by accident) due to the condition affecting such a minority of people.
Over time (years not months), my symptoms reduced in severity and frequency on my hands and feet - and through training myself, I could quite accurately predict which activities would cause a flare up (for instance, if I used hand tools or crouched on the balls of my feet).
As suddenly as it had started, for a period of 2-3 years I was completely free of any such symptoms, to the point I figured that maybe my body had got it's act together and stopped overreacting to everyday pressure...perhaps I had grown out of it, like the doctors had told me.......WRONG!!
My DPU flared up with a vengeance, only now I found that as well as my hands and feet - my neck, waist and the back of my head were affected too....I experienced problems with condoms, which freaked me out the first time it happened!
I have also experienced "skin writing" or dermographism, but this has been very rare in my case.
For the purpose of finding possible links i will state that I was born Jaundiced, 6 weeks early. Had Asthma as a child, and have had most of the childhood illnesses (Chickenpox, Measles, German Measles, Glandular Fever etc) barring Mumps. I have also had the TB, Tetanus and Polio immunisations. DPU aside, I believe I have no allergies to food or pollen etc, although my doctors consistently refuse allergy testing in my search for answers.
I, like some of you, have found that if I am run down or extremely tired, my symptoms are worse. I also concur that alcohol can cause a reaction.
Over the years, due to the lack of medical support/help, I have learned how to manage my DPU as best I can, like I said, I know if something is likely to make me swell up - sometimes I will be pleasantly suprised, but not often!
DPU has affected which jobs I can take, the sports I can play and occasionally caused arguments when partners don't understand why I refuse certain tasks (digging the garden etc).
I hope to find an answer as to what the cause(s) of DPU is/are.......and hopefully how to put it right!
Hopefully my post will help someone, and if you have any questions, I will gladly contribute.
Take care!
I am 53 and have had hives since I was 12. I have been everywhere and done all kinds of things to find a cure. I have them and then they disapear for a while only to return. Every time they go away I pray they will not return. I have had to take prednisone so many times and I have a love hate relationship with the drug. When I am really bad I find I have no choice but to take it. I learned through the years how to cope with the hives. My entire body can and has been covered and I have been rushed many times to the hospital wiht my throat closing. I have a cold anti gluten so I can't get really cold. Sweat bothers me as well. I am aspirin sensitive so I never take aspirin. A friend gave me excedrin migrain one night thiking she was giving me tylenol and I nearly died. They worked on me for a long time to get me under control. My throat was closing and I was out of it. So as you can see I have had many bad ordeals. But I am still here....
I had a allergist tell me one time that I wasn't treating hayfever and I was going to have to more aggreesive with antihistamines. So I took allegra and zyrtec in the morning and mid day if I needed I would take a claritin. At night I would take another allegra. I am not advising anyone on doing this but found that it worked for me to double up on antihistamines. Another thing I have done is had IV's of vitamin C from yam. While it was running in me I watched my hives vanish. The dr that gave me this has passed away and I haven't found another one to do this IV. My latest breakout has been this year and I have tried yet another of thousands of things to do. I went to vitamin store and purchased a blood cleanser and took it and also took quercitin. The hives are pretty well under control so I am greatful. I get delayed pressure hives even when the other hives aren't on me. My knees and ankles are the worst. I try to stay off my knees but forget every now and then and decide to clean tub and sure enough within a few hours they show there ugly face again. I have them right now. Makes me crazy that I can't just be rid of this. I have had all the tests that there are. I have even hoped for a parasite to kill and be cured. But no parasite! I have been to Mayo and to South Carolina, Savannah, Texas, Georgia to many doctors and have spent no telling how much to find a cure. I really don't think I will ever. But again I keep looking. I did read a few weeks ago that many people with urticaria are Vit D deficient and they conducted a study and found by adding it to some people it helped them. I tried it but couldn't tell any difference. But I always try things. There are too many things to tell that I have tried but will answer anything anyone wants to ask to try to help and if anybody stumbles onto anything that might help me, thank you for sharing.
It is very hard to deal with this but I am determined to not let it whip me. If I am covered from head to toe, I lay down on a sheet and cover up with one. I lie as still as I can to slow my blood fow down. It helps! I wouldn't wish this stuff on my worst enemy. I hope something I have said will help you.
Tibby wrote:
I am 53 and have had hives since I was 12. I have been everywhere and done all kinds of things to find a cure. I have them and then they disapear for a while only to return. Every time they go away I pray they will not return. I have had to take prednisone so many times and I have a love hate relationship with the drug. When I am really bad I find I have no choice but to take it. I learned through the years how to cope with the hives. My entire body can and has been covered and I have been rushed many times to the hospital wiht my throat closing. I have a cold anti gluten so I can't get really cold. Sweat bothers me as well. I am aspirin sensitive so I never take aspirin. A friend gave me excedrin migrain one night thiking she was giving me tylenol and I nearly died. They worked on me for a long time to get me under control. My throat was closing and I was out of it. So as you can see I have had many bad ordeals. But I am still here....
I had a allergist tell me one time that I wasn't treating hayfever and I was going to have to more aggreesive with antihistamines. So I took allegra and zyrtec in the morning and mid day if I needed I would take a claritin. At night I would take another allegra. I am not advising anyone on doing this but found that it worked for me to double up on antihistamines. Another thing I have done is had IV's of vitamin C from yam. While it was running in me I watched my hives vanish. The dr that gave me this has passed away and I haven't found another one to do this IV. My latest breakout has been this year and I have tried yet another of thousands of things to do. I went to vitamin store and purchased a blood cleanser and took it and also took quercitin. The hives are pretty well under control so I am greatful. I get delayed pressure hives even when the other hives aren't on me. My knees and ankles are the worst. I try to stay off my knees but forget every now and then and decide to clean tub and sure enough within a few hours they show there ugly face again. I have them right now. Makes me crazy that I can't just be rid of this. I have had all the tests that there are. I have even hoped for a parasite to kill and be cured. But no parasite! I have been to Mayo and to South Carolina, Savannah, Texas, Georgia to many doctors and have spent no telling how much to find a cure. I really don't think I will ever. But again I keep looking. I did read a few weeks ago that many people with urticaria are Vit D deficient and they conducted a study and found by adding it to some people it helped them. I tried it but couldn't tell any difference. But I always try things. There are too many things to tell that I have tried but will answer anything anyone wants to ask to try to help and if anybody stumbles onto anything that might help me, thank you for sharing.
It is very hard to deal with this but I am determined to not let it whip me. If I am covered from head to toe, I lay down on a sheet and cover up with one. I lie as still as I can to slow my blood fow down. It helps! I wouldn't wish this stuff on my worst enemy. I hope something I have said will help you.
Tibby, You said you get delayed pressure hives even when the other hives aren't on me. What do you mean by other hives? Have your TSH, T3 and free T4 levels checks for thyroid disorder. TSH range was updated and the range is narrower than before - 0.3 to 3.0. I had DPU on and off for years. I develped Graves Disease 2 years ago and DPU was the worst it had ever been. This lead me to believe DPU and are thyroid disorder are related. Have you tried Dapsone? It is the only drug besides prednisone that relieved the hives
When I have urticaria it is welts all over. But if I wear tight anything on waist or put pressure on knees I break out withhoves on the area of pressure even no other hives are on me.
I am so glad I found this site, thank you to all who have posted!! Now I even have a name for this crazy stuff! I started getting these really painful, itching welts almost monthly in the past two years. Now having read the posts here I realize that I have had a mild form of this Delayed Pressure Urticaria probably since childhood, but now they have gotten much, much worse.
Because of my allergies, I have been taking Allegra daily for probably about 5 years now (I'm 51). Lately, sometimes if they are really bad, I will take another Allegra 12 hours after the first one (180 mg dosage each), and this makes them stop, but the next week or the next few days, they start again. I do not want my body to get used to two dosages of Allegra a day!
Definitely I now have noticed the corrolation in the tight clothing/repetitive motion and the delay in the arrival of the hives. The top of my left foot is so swollen today it looks like I have "bursitis" or something and extremely painful to walk. From reading your posts I now understand why they are so painful because they are deep in the tissue.
Thank you for all of your posts! There are some really wonderful ideas here, and I'm going to try those I haven't already.
Some history as others have provided:
I have had allergies all of my life (trees, grass, cats, dogs, rabbits, horses, hay, Innoculations, just about everything, etc.) As an adult I cannot afford the allergy shots, but I have noticed that some reactions are much less noticiable with age. Not with the hives, though...
As the other posters have said, I am so sorry that you are all suffering. I hope that we can find a way to make it stop!
Thank you-