Delayed Pressure Urticaria - Rare Disorders Message Board

bestest_mom · 02-23-2006, 10:16 PM

Hi, I'm new to this site. My symptoms began about 12 years ago. At first, it was just acute swelling of my lips for no apparent reason. More recently, about 3 years ago, I started developing huge welts (sometimes 6-10 inches in diameter) on my back, stomach, hips, etc... from minor pressures like my bra or jeans, things that had never been any problem before. Now, it has gotten so bad that I can barely carry groceries or sit at the kitchen table too long because the seats are too hard. Biting my lip by accident even causes swelling. Once the bottom of my face and under my chin got so swollen it looked like I had a second chin.

I have been tested for every allergy in the book with no explanation. I really believe I have DPU but no doctor has diagnosed me. What kind of doctor would be able to diagnose this? A GP? Dermatologist?

I see that some of you have contracted this through an insect bite. I have lived in a very rural setting for over 20 years; perhaps this could explain something.

I really want to get this under control. Right now I am just taking a Claritin when the symptoms flare up but would love any suggestions to take to my doctor. Have any of you tried the injection of epinephrine?

mcdonald · 03-08-2006, 12:19 AM

I forgot to ask this in my previous entry............
Last week my uvula swelled up and also the rest of my soft palate. I hate it when this happens, luckily not very often and most times it is after not being careful in chewing things properly. If I swollow a hard lump of say a pizza base then that is a "risky behaviour" ! How sad is that!
When it swells I end up swollowing my uvula if I try to get rid of any mouth secretions. I am unable to drink/eat anything and find it hard to talk. I also gag a lot as the uvula flops onto the back of my tongue. All in all very distressing. All I can do is lie on my stomach over a pillow so gravity moves the uvula forward and drool into a tissue. Not a good look. My Dr saw me at the end of one of these episodes and said I needed to go to emergency. Can people please let me know if any one else has had this occur and if so, by going to emergency what would happen and does it help, and if so how long does the injection take to work. Thanks .

slurpy102 · 04-06-2006, 04:16 PM

Hello,

I have endured DPU for almost 20 years now. I have the wheals almost every day with some days much worse than others. It has triggered behavior modification on my part - avoid those things that cause the reactions (a couple of examples include go-karting and waterskiing - both have caused severe reactions in my fingers and hands). Sometimes I make a conscious decision to do or not to do, depending on whether or not I think it is worth the afteraffects. The motel thing is real, especially when the beds are hard! I won't give up riding my motorcycle, however.
I have tried almost every antihistamine that has come on the market since this started (on a canoe trip). Currently, I take ranitidine in the mornings and doxepin at night to "manage" (my dr's word) the condition. I keep hoping that some day I will wake up and find that it is gone - the reverse of when it came on. Good luck to all.

basilisk · 04-10-2006, 08:03 PM

This seems as good a thread as any to post my experience with chronic urticaria. I have had it for more than 3 years... I seem to have gone through phases with first waking up EVERY day with hives for about a year, then getting them only from pressure, then mostly exercise/heat. I am in the exercise/heat stage right now.

I have a good doctor now and we have done many tests. These are tests that I have had done. Some look for common things but others represent more serious problems. I hope this list might give the hopeless cases (like me) some ideas!

Tests I have had:
We checked for autoimmune diseases, a broad spectrum of allergy tests (blood and skin tests), I tried an elimination diet, checked thyroid function, TSH and anti-thyroid antibodies, checked for celiac disease, H. Pylori infection, full metabolic blood panels, CBC, Sed Rate, urinalysis, rheumatoid factor, ani-nuclear antibodies, Immunoglogulin levels (IgA, IgG, IgM), Tryptase levels, Anti-Tissue Transglutamnase... And finally, O&P stool samples.

The only results of these tests were mild general allergies (which I mostly knew about), and elevated eosinophil level and Blastocystis hominis infection!

Blastocystis hominis is actually a common parasite and I am on metronidazole to treat it. I am on day 2 of a 10 day course. Surprisingly, it appears that there have been urticaria cases related to Blastocystis hominis... I will post towards the end of my treatment to see if this helps.

If you have chronic urticaria, I would recommend going through the hassle of stool samples (not that bad!) to check for any parasites.

Beridi · 05-12-2006, 02:20 AM

Hi Guys and Girls,

It has been very interesting reading the postings. Lots of food for thought. I was diagnosed about 6 months ago with DPU. At first i was very ****ed off. But i decided that i was not gonna let it drag me down. So i took action. I will share with you a few things that have worked well for me.

Firstly, like most DPU sufferers i too have ordinary and cronic urticaria as well. The antihistmines seem to help with that a bit, but do nothing for the DPU itself, which is the most debilitating part. I used to cycle and run a bit and so had to stop. However, after about 4 months of little exercise and weight gain i realised i could not go on like this. So i thought to myself, what exercise could i do that would not put pressure on my body? Quickly i realised that swimming was ideal. The results have been amazing. I now swim at least 4 times a week, a proper swim too, for about an hour and i really get the heart rate going.

Since i started the swimming my DPU has faded into the background, so that normal day to day activities dont cause any real problems. Yes, if i walked 5 miles i would probably get sore feet, or if i did DIY, my hands would swell up. But normal daily stuff, which previously effected me, no longer does.

I also gave up the cigs, lost over a stone (still planning to lose another) and started eating healthly. This all combined means that it now barely affects me in my daily life. Its great.

The exercise is key though. I recently was traveling for 10 days and was unable to swim. Guess what, the DPU started for flair up again. Not sure why exercise helps so much, maybe you body releases a chemical during exercise that combats DPU. Perhaps. I dont know. But for me, it makes all the difference.

Ironically, as a result of tackling the problem, i am now fitter that i have been for the last 20 years. An i feel great, 99% of the time.

Another thing i found useful, was to get shoes with thick, soft and ridged soles. This seem to help by dispersing the pressure across the whole of the foot, rather than creating particular pressure points. I invested in a few pairs of shoes like this and am able to walk far further that in a thin sole shoe, before i get problems.

Anyway, this stuff work for me, hope it does for you. Good luck.

Beridi