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-   -   delayed pressure uticaria (http://www.healthboards.com/boards/rare-disorders/575440-delayed-pressure-uticaria.html)

Blake P 02-01-2008 07:48 PM

Re: DPU...who knew?
 
OK, first let me apologize for being so late to comment to this group. It was here that I learned the "name" of the disease that was making my life horrible. I went to a dermatologist and he confirmed that DPU was the issue.

I spent the last 10 years dealing with this without ever knowing anyone else with the same condition. My episodes would be extreme sometimes to the point that I could not even walk because my feet would be so swollen and tender.

My hands would itch and swell up (after using something as simple as a hammer, screwdriver or drill etc.) and I would almost make them bleed scratching them day and night. My throat swelled to the point that I had to be taken to the emergency room. The hives would be horrible around my torso and back. I had no idea what was happening and no idea how to control it.

I love to play golf, but after walking 18 holes I would have what felt like major flu symptoms, body aches, and swelling in my feet, hands and arms. I would basically be bedridden for 24hrs. following a round of golf. If I carried my bag on my shoulder, the next day my neck and shoulder would be visibly swollen and extremely sensitive and painful.

Prednazone was the only drug that could stop the symptoms. Of course this is not a long-term remedy so I would only take it if I absolutely needed to be fully healthy or to more quickly recover for some physical activity.

I am currently on a small "cocktail" of drugs that seems to be working great! I started with higher doses and have since eased back the dosage to keep my DPU in check. I have not had a major flare up since starting the medications about 1 year ago.

He prescribed Loratadine 20MG Hydroxyzine 25MG and Famotidine 40MG daily.

Because I was also experiencing extreme pain in my esophagus area during the DPU symptoms, the doctor prescribed the Famotidine (Acid Reliver). I am not sure how much it would be necessary if esophageal issues are not part of your symptoms, but it could be the "cocktail" that makes it all work. I don't know for sure, but I am thrilled with the results.

Currently I only take the medication about 1x per week or when I feel any symptoms coming on after physical activity.

I hope some of this info will be helpful to you if you are experiencing DPU. Again, I apologize for taking so long to respond to the group. At least I have a year of health behind me, and hopefully that lends more proof to the medications that are working for me!

Thanks everyone!

Blake P

moommin 02-02-2008 03:22 AM

Re: DPU...who knew?
 
hi what dose dpu mean,shirley

rookanga 02-02-2008 02:38 PM

Re: DPU...who knew?
 
Hello Everyone,

It's been awhile. How are all of you? and welcome to people I haven't heard from before. DPU means 'delayed pressure uticaria.' Although from what 'Terminator' has written I think some of mine are more typical to delayed pressure angioedema.

In October I adopted a retired racing greyhound. Adjusting to this wonderful dog has taken some time and energy but has been great for my morale. He keeps me walking daily, discovering new trails in this beautiful northern Minnesota city; he naps most of the rest of the time and is great company.

I have adjusted my lifestyle and am doing fairly well. I still notice lack of sleep makes the DPU's worse. The other morning I had them all over my back and it took a while before I remembered that I had done some yoga exercises on the floor the previous morning...I will try and keep it up more regularly and see if my body adjusts.

There are times when I hate limiting my activities and the general invisibility of this condition that makes it hard for others to know or understand that (or why) I live the kind of life I do. Other times I am so glad when I discover a new way to make a difference. We are in the midst of an interesting political campaign and I am excited to be able to volunteer calling people to encourage them to vote.

Thanks again to all of you for sharing,

Julie J.

ruby99 02-03-2008 06:45 AM

Re: DPU...who knew?
 
[QUOTE=rookanga;3423431]Hello Everyone,

It's been awhile. How are all of you? and welcome to people I haven't heard from before. DPU means 'delayed pressure uticaria.' Although from what 'Terminator' has written I think some of mine are more typical to delayed pressure angioedema.

In October I adopted a retired racing greyhound. Adjusting to this wonderful dog has taken some time and energy but has been great for my morale. He keeps me walking daily, discovering new trails in this beautiful northern Minnesota city; he naps most of the rest of the time and is great company.

I have adjusted my lifestyle and am doing fairly well. I still notice lack of sleep makes the DPU's worse. The other morning I had them all over my back and it took a while before I remembered that I had done some yoga exercises on the floor the previous morning...I will try and keep it up more regularly and see if my body adjusts.

There are times when I hate limiting my activities and the general invisibility of this condition that makes it hard for others to know or understand that (or why) I live the kind of life I do. Other times I am so glad when I discover a new way to make a difference. We are in the midst of an interesting political campaign and I am excited to be able to volunteer calling people to encourage them to vote.

Thanks again to all of you for sharing,

Julie J.[/QUOTE]

ruby99 02-03-2008 07:12 AM

Re: delayed pressure uticaria
 
:(
Hi there,
So glad there is someone to talk to about this terrible condition, I posted on another thread a couple of weeks ago but have had no reply, you can find my posting in what finally cured my chronic hives, I posted there because alot of the users knew alot about the subject.
I am learning to cope with dpu but am finding life in general a real strain as my family do not understand anything about it, my daughter calls me a drama queen when I am not able to walk due to swelling on my feet and I have to stay in bed to relieve the symptoms.
I had been diagnosed with DPU although I had guessed through research that was what it was, I also have chronic urticaria and anything can cause me to wheal.
I am having lots of blood tests done at the moment, the first tests came back normal and these were for thyroid and infections, since going to the dermotologist he had written a letter to my doc advising what to test for, and the latest tests include lupus which can be assoiciated with chronic urticaria this is called lupus urticaria.
I am taking 3x hydroxyzine at night and 2x loratine in the morning but am like a zombie all the time, I also have an epipen now because of swellings in my throat.very bad heart burn with the meds, I did not want to go on steroids on my last visit to docs because im so afraid after reading other postings that it will come back twice as bad when you ween off, also I am an asthmastic and know that I feel very strange on steroids, My doc also gave me some anti imflamatories that made me very sick, these drugs did seem to have an affect and the itching was less intense and the hives not as widespread but because I work shifts I have had to cut the night meds and now I am covered again and my feet have started to swell, my fear is that steroids will be a certainty.
I am sure that something causes this disease and really need to find out what it is, there has been some suggestions of a possible hormone link, I asked my doc and she said she will run some tests after these latest ones. I find it hard to think that I may be stuck with this for years like so many others when Ive always been so active. This is all having such an impact on my personal life and my work life. Ruby


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