Possible useful information concerning Urticaria

[navy]

Hi,
I am new to this forum but not Delayed pressure urticaria. First I want to say that dermatigraphism and pressure urticaria can go hand in hand but are NOT the same thing. I have had DPU for over 15 years and let me tell you I have done my homework. I had to diagnosis myself and prescribed the only med that worked after all the antihistamines didn't. I am not a doctor but was able to convince one to give me sulfasalizine. It kept the flare ups away for about 5 years but I ocassionally had a small erruption. The problem is it stopped working after a while. I am now on Dapsone that my derm doc who was the only derm doc in my very large medical area that knew what this was. She called a collegue out of state who only deals with urticaria who said to try this. I am only on the begining dose but seem to have calmed down maybe (too soon to tell for sure). The interesting thing with all said here, it is an anti-infective med as was sulfasalizine. Dapsone was originally used to treat leprosy and now for skin infections. I beleive this is some form of an infection.

I have tried every antihistamine known to include 100mg atarax daily and 30mg zyrtec. zantac, a antidepressant known to have anti-ithc qualities (forget the name presently) and prednisone all at once and they did not work (in the past) like sulfasalizine.

I too have had to resort to not working due to painic attacks, respriratory, and high blood pressure that is going with this and the prednisone use.

I have it so bad that I cannot get dental work unless I take predinsone at high doses before and after. I have had 3 teeth permanately removed that I know now was the swelling from hives causing my pain. I can't wear regular jeans or most shoes, tight bra's, or any article of clothing that does not move freely with my skin. The slightest bit of extra pressure or tension on my skin or muscles cause hives/angiodema (mostly) and a lot of pain. I stretched my back and it has been swollen for a week. I had two surgeries that pain was the main complaint and neither worked. In hind site it was a repeated flare in the same area as my surgery and not a permanent condition.

DPU is extremely rare in comparison to other forms of chronic urticaria as it does not even evolve/react as others do. When it is biopsied it does not have the same charteristics as a normal (if there is one) hive. That is why it does not respond to the antihistamines. I even had my own blood drawn and reinjected into my muscle to attempt to treat this but it didn't work.

As Hogan said you have to do this one yourself. Even though I have a doc that knows about this she is the first to tell me "I am her only patient and we are learning together". Most of you would say that is not good but I say the others who claimed to know about this didn't and at least she does and doesn't pretend to have an answer that no one has found yet but is willing to honestly work with me on it. The thing is I went to over a hundred docs and she is the only one who truly knew this disease. I even went to the chief of derm at my VA who is considered a "top doc" and he said it was dermatigraphismand not that because it is too rare and he was wrong. I seem to have dermatigraphism when I am very flared but they are two different diseases. I have the resources of both VA and a very large hospital group in my city and no one really knows what to do. If you have this don't confuse it with other urticaria because you too will be on the antihistamine trail....


I am glad to see someone taking an interest in fighting these conditions because they are non life threatening (according to docs) and docs don't have the time to throughly research this unless it is life threatening or noble prize type stuff. I got lucky with my doc but it took literally hundred+ to find her. After seeing over a hundred I got smart and called. I refused appointments unless the doc confirmed knowledge of this horible disease and after about 25 more I got a call directly from the doc I now have noting she was just reading about this and would be willing to give it a try. I have been with her for over a year and still no cure but some improvment at times and now the Dapsone suggested by her big shot collegue and time will tell. I will keep you posted on that.

The other thing I've been reading is that sometimes this turns out to be thyroid so think about having it checked....

Navy

[Hogan Grimm]

Hey all sorry I haven't posted anything lately. I hurt my lower back the other day and right now sitting up is pretty painful. Also I would like to say hello and welcome to Navy.

To Andrew66, I do agree in some cases that urticaria can be autoimmune, but in some cases it isn't. I will be covering that as I finish posting the information I have on Chronis Ideopathic Urticaria.

To HAIRDOER, let us know what you find out about your test. Good Luck.

To Navy, Yhank you for the information you have provided. Anything and everytinng is never to small to post about. A little later I will be covering the topic about Delayed Pressure Urticaria, and Dermatographism. I think the name you might have been looking for was doxipine?

Anyway just wanted to let you know I am still here and I will be posting more soon.

Hogan Grimm

[navy]

Hey Hogan,
You're right, the name was doxipine. I thought of it late last night the bell went off in my head. It is so funny, I hurt my back last week and it is just about tolerable now. I am so used to pain I just do whatever anyway. The thing is I beleive (docs say sprain) that the back was this DPU. I stretched a little for the first time in a while and have been swollen since. That was last wednesday and today is thursday. Even my husband says it wasn't spasmed but inflamed. I had a few little red marks.

That brings me to what is (I think) the most troublesome thing about DPU. In this one you don't have to have a visable hive to be in a lot of pain. In fact the worst is when they don't surface. I can't beleive others haven't said about dental work. I have to take massive amounts of prednisone to get through even a filling or it will feel like an abscess after the work is done. If extensive enough the whole mouth feels abscessed. I once had a root canal and hurt for months after and I don't mean a little tooth ache. Until I had prednisone prescribed I could barely eat and even put pizza in the blender out of desperation to eat something fun and normal after almost a month and over 10 pounds gone. It eventually led to my extractions. Anyone had problems with dental work??

One more thing. Not that it deters me but I called an endocrinologist yesterday about the thryoid connections and they said they don't know of anyone to have had hives due to thryoid. It was an office person but she took my name and called back and then I talked to a research and treatment clinic who said they don't know of a connection. I also had tests for lyme disease just in case it could have been that.


Navy

[Hogan Grimm]

Hello navy
I haven't had any dental work done on me so I can't say that I have suffered from any pain or swelling because of it, but I am positive that if I did it would cause me a great deal of suffering.

Just to let you know, even though I have been diognosed with dermatographism, that is in reality the wrong diognoses. I have delayed pressure urticaria, and I know this to be true because when I am in a situation where pressure can't be avoided it usually won't show up until a few hours later.

Sometimes however, if the pressure is extreme enough it can come on in just a few minutes.

I used to practice the martial arts, and do a lot of sparring, that was something that I really loved to do , but I had to stop going to class because I would swell so badly due to the contact involved.

It really is a very difficult thing to accept when your life must be altered to try and possibly get as close as you can to being normal again. Since I have had this condition all I have now are the memories of who I once was.

So I have taken it upon myself to learn as much as I can about what I have and the many different manifestations of urticaria, and try to the best of my abilty pass that information on to others so they might take some or all of it show it to their doctors, and mabe get something going.

Well I better get, I have to get started on the next segment of chronic urticaria. Thank you for you input.

Hogan Grimm

[Hogan Grimm]

Hello all

Chronic Ideopathic Urticaria (continued)

If you have a rash that lasts more than six weeks, then you may have what is known as Chronic Ideopathic Urticaria. The word Chronic means that it lasts a long time.

But, how long is long? In one study it lasted a year or more in more than 50% of patients, and 20 years or more in 20% of them. Now this doesn't mean that in almost half the people it clears up within a year, and in 80% it clears up within 20 years or less.

Urticaria affects about 20% of people at some point in their life, usually in about the forth decade, but can and does happen at any age. In some cases the condition is mild, recurrent, and frustrating for the patient and the physician. In other cases, it manifests itself as part of a spectrum of systemic anaphylaxis, which could be life threatening.
The disabilty and distress caused by urticaria can(and does) lead to very serious impairment of quality
of life, almost comparable to that experienced by patients with cardiovascular disease.

To further complicate the issue, a large list of diseases can cause urticaria.

"My comments" Well that's it for now, I hope you find it useful. "End comments"

Hogan Grimm

[This message has been edited by Hogan Grimm (edited 10-17-2003).]