I am editing this so everyone will read the last post on here by me. I have been hive free 4 months now and off the drug that fixed me. It has been awhile since I posted. I just wanted to give you all the info that may help you as much as it helped me. I have had Chronic Ideopathic Urticaria for well over a year. Well, sorta. Someone on here told me about a med that helped that person so I asked my Dr. about it. She said it was not used for hives but worth a shot. The drug is sulfasalizine. 4 pills a day. It is commonly used to treat Chrons disease, arthritis and colitis. I have to take several supplements as well. Had to have blood work done first. But I took it for two months and was completely clear of all hives for a month. So I stopped the medicine and the hives are returning but it took about a month before I got any. I get pressure hives too. SO I am starting the med again and we will see what happens. The first time I took it, it was about 6 weeks before they started to go away. I hope it works again and I plan on taking it longer if the hives are gone anyway just to make sure. I really enjoyed my life not revolving on how bad the hives were day to day. I hope this may help someone out there like it did me.

Updated this information at the bottom and the new post tells about my new diagnosis. I am on different meds now and will do a new thread later.

Hey, this is interesting to me as Im suffering from chronic pressure hives. for years now Ive had them. can you tell me your symptoms? and what meds you took before. eg. reactin or claritin. is sulfasalizine a safe drug to use? cya

Hey, this is interesting to me as Im suffering from chronic pressure hives. for years now Ive had them. can you tell me your symptoms? and what meds you took before. eg. reactin or claritin. is sulfasalizine a safe drug to use? cya

Humm. Symptoms...very large hives that appear on any body part that is under any stress. Like bottom of my feet. Can't wear tight pants, belts, or put much pressure anywhere without getting welts that itch and get red and drive me nuts. The hives itch but mostly hurt. I have developed hives just from shopping for an hour and having the hangers over my arm on my way to the dressing room. Within a couple of hours I will get hives if I get a massage. I also get hives in places that have had no pressure and then they usually go away within 24 hours only to pop up in a new place.
Last winter I tried every anti itch medicine. I did the benadryl, allergra, and a few others that do a good job making me sleepy. I have two kids and no time for resting most days. I also did 4 or 5 rounds of steriods last winter. I got a couple of cortizone shots. The steriods helped when I was on high doses but as soon as I got down to 20mgs a day the hives would come back with a vengence. I have had them internally. Head to toe.
I got on this board and someone said they took the sulfasalizine and had taken it for 5 years I think till it quit working. I went to my Doc and said, hey can we try this medicine. She said she had not tried it before for this but it may be worth a shot so wa laaaaaahhhh. She listens to me cause she knows I KNOW more than she does about it!! I got it and it took awhile before the hives went away completly but they did so I decided to taper myself off. It took about the whole month of Jan. before they started to appear again so I am taking it again and I will see if it works again. I sure hope so. I had a big hive on the bottom of my foot all night last night and could not walk on it this morning and was itching all night so I could not go to church this morning, but by noon the swelling was starting to do down and it is almost gone now. I have a few small welts on my tummy and back but they do not bother me very much. Wonder where the next ones will be. :rolleyes:
If you do a search on the drug name you will find info about it. No where did I find that it is used to treat chronic hives but it worked for me and at least one other person. I think it is much safer than anti-histamines forever and steroid use long term. I think these hives are not caused by allergies but something internally that is all mixed up. It has to do with IgE antibodies and the autoimmune system. It is so complicated that there is no know cause that can be pinpointed by Drs. SO it is up to us to do as much research and help ourselves so that we can someday figure out a way to stop this. Keep reading all you can. Good Luck to you too!!!

Well Hey Hairdoer,

Glad to see you around again. I have been gaining some ground on finding ways to stop breaking out as well, I will post more about that later today.
I didn't want to say anything untill I was sure that what I was doing was working, but I think I can post it now.

Let me get my notes together and I will post what I have found.


Hogan grimm

That's great..do you know if it work for hives/rashes that are triggered by allergies/dry/cold air?
I've been lucky not to have an outbreak in a long time..but often when it comes, it's EXTREMELY difficult to get rid of..

To PinkBanana. In a word, ......no. Sorry I have no idea if it would work for you and I really have no idea why the sulfasalizine worked for me. But I think it is worth you asking your Dr. about it though. What kind of hives do you get? There are many triggers to hives. You can get them from pressure. Like the kind I get, or cold induced, excersize induced and many othere things. You really need to know your triggers and avoiding them would be the first step. The ones I get I have no idea how or why they show up. I have had them on my eyes and throat. Even my tounge. The most common places are feet, from wearing shoes and standing or walking all day. That is unavoidable for the most part because both my jobs are on my feet. And of course being up and taking care of a house and kids requires walking. I hope you can find relief from your rashes too.

Hey all,

What is sulfasalizine
Here is a little info on sulfasalizine, which is the generic name for azulfidine.
Sulfasalizine was introduced in 1949, and is a man made sulfa compoundthat is taken by mouth to treat inflammatory disorders of the bowelsuch as ulcerative colitis, chrons disease and other inflammatory conditions. (my words:Which is why I think it works for pressure urticaria.) It is sometimes givin in conjuction with prednisone.

What sulfasalizine is not
Sulfasalizine is chemically related to sulfa antibiotics, however it doesn't have the same bacteria killing properties needed to fight infection because only one third of eachsulfasalizine dose is absorbed into the blood stream while the majority remaines in the intestines where it acts to heal inflammation.

Sulfasaliaine can affect the absorption of folic acid from your diet, and can sometimes cause anemia, so it is suggested that you take a supplement containing folic acid. It is also common for sulfasalizine to discolor your urine to an orange-yello color. this side effect does not require medical attention.

Well I hope that helps.

To Hairdoer, Hey Hairdoer if you will remember when navy used to come to this board she stated that she had taken sulfasalizine for five years and that it was used to control her delayed pressure urticaria, but she had to eventually stop taking it for whatever reason I can't remember. Also sulfasalizine is not a cure, it just stops reactions as long as you are taking it, but when you stop the symptomes return.

To all who are interested, I posted earlier that I was on to something that has benefited me since I have been doing it to treat my chronic hive condition that I have had for four years now. I truly believe I might have found an actual cure, one that will get rid of this condition forever, but it may not work for everyone since the reasons some of you might be breaking out with hives for other reasons, but it is worth a shot to try it and see if it works for you.

I will be back later today to post that information. I will start a new thread and those of you who are interested a welcome to read it.

Hogan Grimm

Thanks Hogan for all the info. I am waiting patiently for your CURE and I hope it is more permanent than what I am doing. I think navy said she took it and it just quit working for her. So I know I can not take it forever either but it is better than being on steriods and all the side effects that go along with that and taking antihistamines long term. In my humble opinion anyway. Are you free of hives now too?????? I am hoping so!! You have suffered long enough!! Thanks again.

Hey Hairdoer,

No I haven't completely stopped breaking out into hives, but what I am doing has helped tremendously. As you know I am always searching for answers, and I have not stopped, and I never will. Even with what I have found does turn out to be a cure for some (myself included) I will not rest untill I can find ways to help other people who suffer from this.

I have dedicated my life to helping others with chronic illnesses. I have taken on a great burden, and only navy has stood with me in this. Her and I still communicate even though she doesn't come to this board anymore.

Anyway, I am starting a new thread, and will be posting my research there.

Hogan Grimm

Hey Hairdoer,

No I haven't completely stopped breaking out into hives, but what I am doing has helped tremendously. As you know I am always searching for answers, and I have not stopped, and I never will. Even with what I have found does turn out to be a cure for some (myself included) I will not rest untill I can find ways to help other people who suffer from this.

I have dedicated my life to helping others with chronic illnesses. I have taken on a great burden, and only navy has stood with me in this. Her and I still communicate even though she doesn't come to this board anymore.

Anyway, I am starting a new thread, and will be posting my research there.

Hogan Grimm

I'm trying to do the same..doctors frustrate me and more and more I find it tempting to become a doctor or researcher. The medical science business just makes me sick how it's run these days..doctors only becoming doctors so they can drive mercede's and bmw's and take three week long vacations in florida. less and less we see doctors truly wanting to help people and truly taking an interest in the patient. people with serious problems are not being taken serious enough and are not recieving the care they should be. medicines seem to only be made nowadays to relieve symptoms..why does it seem like so many medicines come out while we still sit around and wait for cures or something close to it? don't tell me they are that far away from it b/c if they were, all pharmaceutical companies would go outta business and boohoo some jobs would be lost for those money hungry people.
I find that people on these boards know much more and are much more helpful than most doctors I've seen. It really makes me sick when say my lung specialist refuses to believe the connect between my rashes and my asthma(always occur at the same time lately). Or when millions and millions of american suffer from problems such as allergic rhinitis, sinusitis, chronic cough, etc and b/c it isn't a life threatening problem, doctors don't do much. Nor do they take the patient seriously. But it IS serious for the people that do suffer from the like..you think its easy for the person with allergic rhinitis to be told their problem isnt something to be taken seriously when they have a 5min long sneezing attack every 10 mins? Or for the sinusitis patient to be told that hte excruciating headaches are "just sinus problems, dont owrry bout it". or the chronic cough patient that just b/c the lungs look and sound clear, their fine..despite the zERO sleep their getting form the coughs?i asked my lung doctor why i coughed so much more when i laid down at ntie and you know what he said? "i dont know". why am i seeing you for problems that you cant help me with?
i'm extremely lucky to have a great PCP who just seems to love what he does and is a great nice guy but i can't say the same for every other doctor i've seen. why are some sooo rude! they totally snub you, and its like your a doctor..why are you in this if you dont want to help people. and then ther eare some that ar elike robots who could care less about how you feel , go strictly by statistics and numbers and recite what sounds liek striaght from a book. I HATE THAT!!
this is supposed to be a HELPING field. instead it's become too much of a gold mine for money(i've heard of hospitals charging as much as 20$ for a pill of tylenol). i understand people wanna become rich but if you DONT CARE to help people..this is not your field!!!!
thank you
i had to get that out.

I'm trying to do the same..doctors frustrate me and more and more I find it tempting to become a doctor or researcher. The medical science business just makes me sick how it's run these days..doctors only becoming doctors so they can drive mercede's and bmw's and take three week long vacations in florida. less and less we see doctors truly wanting to help people and truly taking an interest in the patient. people with serious problems are not being taken serious enough and are not recieving the care they should be. medicines seem to only be made nowadays to relieve symptoms..why does it seem like so many medicines come out while we still sit around and wait for cures or something close to it? don't tell me they are that far away from it b/c if they were, all pharmaceutical companies would go outta business and boohoo some jobs would be lost for those money hungry people.
I find that people on these boards know much more and are much more helpful than most doctors I've seen. It really makes me sick when say my lung specialist refuses to believe the connect between my rashes and my asthma(always occur at the same time lately). Or when millions and millions of american suffer from problems such as allergic rhinitis, sinusitis, chronic cough, etc and b/c it isn't a life threatening problem, doctors don't do much. Nor do they take the patient seriously. But it IS serious for the people that do suffer from the like..you think its easy for the person with allergic rhinitis to be told their problem isnt something to be taken seriously when they have a 5min long sneezing attack every 10 mins? Or for the sinusitis patient to be told that hte excruciating headaches are "just sinus problems, dont owrry bout it". or the chronic cough patient that just b/c the lungs look and sound clear, their fine..despite the zERO sleep their getting form the coughs?i asked my lung doctor why i coughed so much more when i laid down at ntie and you know what he said? "i dont know". why am i seeing you for problems that you cant help me with?
i'm extremely lucky to have a great PCP who just seems to love what he does and is a great nice guy but i can't say the same for every other doctor i've seen. why are some sooo rude! they totally snub you, and its like your a doctor..why are you in this if you dont want to help people. and then ther eare some that ar elike robots who could care less about how you feel , go strictly by statistics and numbers and recite what sounds liek striaght from a book. I HATE THAT!!
this is supposed to be a HELPING field. instead it's become too much of a gold mine for money(i've heard of hospitals charging as much as 20$ for a pill of tylenol). i understand people wanna become rich but if you DONT CARE to help people..this is not your field!!!!
thank you
i had to get that out.

AMEN!!! :)


-Deanna :bouncing:

I'm trying to do the same..doctors frustrate me and more and more I find it tempting to become a doctor or researcher. The medical science business just makes me sick how it's run these days..doctors only becoming doctors so they can drive mercede's and bmw's and take three week long vacations in florida. less and less we see doctors truly wanting to help people and truly taking an interest in the patient. people with serious problems are not being taken serious enough and are not recieving the care they should be. medicines seem to only be made nowadays to relieve symptoms..why does it seem like so many medicines come out while we still sit around and wait for cures or something close to it? don't tell me they are that far away from it b/c if they were, all pharmaceutical companies would go outta business and boohoo some jobs would be lost for those money hungry people.
I find that people on these boards know much more and are much more helpful than most doctors I've seen. It really makes me sick when say my lung specialist refuses to believe the connect between my rashes and my asthma(always occur at the same time lately). Or when millions and millions of american suffer from problems such as allergic rhinitis, sinusitis, chronic cough, etc and b/c it isn't a life threatening problem, doctors don't do much. Nor do they take the patient seriously. But it IS serious for the people that do suffer from the like..you think its easy for the person with allergic rhinitis to be told their problem isnt something to be taken seriously when they have a 5min long sneezing attack every 10 mins? Or for the sinusitis patient to be told that hte excruciating headaches are "just sinus problems, dont owrry bout it". or the chronic cough patient that just b/c the lungs look and sound clear, their fine..despite the zERO sleep their getting form the coughs?i asked my lung doctor why i coughed so much more when i laid down at ntie and you know what he said? "i dont know". why am i seeing you for problems that you cant help me with?
i'm extremely lucky to have a great PCP who just seems to love what he does and is a great nice guy but i can't say the same for every other doctor i've seen. why are some sooo rude! they totally snub you, and its like your a doctor..why are you in this if you dont want to help people. and then ther eare some that ar elike robots who could care less about how you feel , go strictly by statistics and numbers and recite what sounds liek striaght from a book. I HATE THAT!!
this is supposed to be a HELPING field. instead it's become too much of a gold mine for money(i've heard of hospitals charging as much as 20$ for a pill of tylenol). i understand people wanna become rich but if you DONT CARE to help people..this is not your field!!!!
thank you
i had to get that out.

Hey PinkBanana,

Believe me I know how frustrating it can be dealing with doctors, for the most part what you have to understand is that doctors are limited by the information they have avalible to them by drug company researchers. They always get up to date information on new treatments for this and for that, and the fact that the vast majority of doctors won't accept the fact that there just might be another way to deal with an illness other than synthetic drugs.

When a doctor finally does wake up and realize there are other possibilities other than main stream medicine, he or she is highly critisized by his or her peers and threatened to be bared from practicing medicine, so it's up to us to come together and make a difference.

I started a new thread called Another Hives Thread and I touch a little bit on this subject.


Hogan Grimm

Hi all,
It has been a while. I am Navy. I am the one who took sulfasalizine. I wanted to warn everyone this is not likely to cure you but if you hold it off long enough there it a slight chance is may. For me, it worked almost completely for about 3-4 years, then I had breakthrough so I upped the dosage to 8 instead of 4 pills which worked better for about 6 months. I have to say it stopped working completely after that and I am just as bad if not worse than I used to be. I also tried dapsone which was begining to work but has potential to drop RBC's and hemaglobin as it did for me so it is really not a good alternative. They are better alternatives than prednisone or any of the dozens of meds I have tried so far but only if you tolerate the meds. Sulfa is a lot easier to tolerate except if you have sulfa sensitivities. I am getting ready to try it again after taking about 6 months off.

I know the doctor thing too. I have been to about 200 so far and 3 operations and extrated teeth before I figured out or accepted that most of my pain is from the DPU and not able to be operated on. I recently saw a doc I thought was different but then I saw his NP after 2 visits and she was really something. She gave me a med and wouldn't tell me about it. Luckily I looked it up before I filled it as I often do and I had taken it before. Word of caution, don't ever take anything or do anthing recommended before you have researched it yourself. I stopped 3 potentially horribile things from happening just by checking out the med before I took it. Docs can't possibly know all there is to know about meds. When I took the med before it caused me to have stroke symptoms after taking it for 5 days and I notified them of this. They took offense and dropped me as a patient. I probably saved them from a negligence case at best and they took offense. There are good ones and really bad ones. I now have settled on 4 and don't think I will change. They have no cures for me but they do understand this is disabling so at least they care and they are willing to let me try things if I show them reasonable information to back up my request. Find someone who will work with you and not dictate, that is the best doc you can find. No one knows what you go through but you and the doc who understands that is a notch above the rest.

As I said I have tried dozens of meds and probably more docs so if anyone has questions just let me know, I probably have tried it. I am now off work and don't see going back due to this and other pain conditions so soon I may have info on getting disability too.

Take Care,

Navy

The way I found my docs was by calling dozens and asking them if they have any experience with DPU or at least know what it is since it is so rare they probably have not had patients with it. When some called me back I knew they had interest and cared about their patients to have taken the time to call me back. Some told me I wouldn't get any to call back but them but didn't seem to beleive me ect... The bottom line is you have to take control of this and find docs that know about it. Most docs need educated about so you have to find one willing to ackowlege that or you will be their ginny pig and they won't be of any help to you.

YO Navy. Long time no read your stuff. Just wanted to say thanks to you I had my temperory cure. How does that sound? I know weird. But hey, I felt better than I had in a long time on that stuff. Glad to see ya'll still on this thing. So you and Hogy been doing some chatting I guess. Good for you!! :) I need to go rest my weary head now but wanted to say hey to ya. It's been crazy in my world latley but I am hanging on. :D Life is still great!! Well, mostly great. ;)

I can definitely say that sulfa is the closest thing to a cure I have found. Just wish it lasted indefintely. It is better than prednisone that is for sure. I have had to be on that for the better part of 2 years to tolerate dental work. That is the one area that sulfa didn't help. I still could not get dental work or get rid of the swelling in my mouth form the DPU unless I took prednisone and I had to get 18 crowns so it was a must. Now I have to taper by 1mg per month which is not quick enough for me. I gained 30 pounds from it and a couple new meds called lasix and atenolol for my rapid heart beat and edema. Hopefully they will leave when prednisone does in 3 more months providing there are no dependency complications. Hopefully my body makes cortisol after all this cause if not I will have to stay on the prednisone. I tell this to warn about prednisone use unless you really have no other choice. I didn't but in hind sight I think I would have endured a little more pain and a little less prednisone. I couldn't have gone without but I would have taken the minimum. It is easy to take when it is helping but no one thinks about the effects long term (myself included) and the real permanent problems you can create. I hope the sulfa keeps working good for years to come cause it is a relatively safe drug.

Oh, make sure you are taking folic acid. It is depleted by sulfa and get your blood and liver and kidney functions checked monthly for the first couple then quarterly then at least every 6 months. There is a chance it can cause liver or kidney or blood counts to have problems and you don't want to find that out too late. My first 2 docs that were giving it to me didn't do either and luckily it was ok but they didn't think it was necessary or just didn't know so make sure your doc does.

Navy

Hey Navy,

Glad to see you back, and the sharing of your knowledge and wisdom is very much welcome. Once again you have proven yourself a worthy ally.

Hogan Grimm

Hey Navy,

Glad to see you back, and the sharing of your knowledge and wisdom is very much welcome. Once again you have proven yourself a worthy ally.

Hogan Grimm


It took me a while to figure out how to navigate this new board...

Hi all,

Well, I talked to my derm doc and she is willing to let me try sulfa again so here goes. I will pick up the rx tomorrow and see her in a month. Maybe it will at least help this intense itch I am getting back since dropping the prednisone to 3 mg soon to be 2mg then 1mg then none I am terrified about the none but more terrified about taking it at all anymore since I gained so much weight and began the edema and tachycardia problems after so long on it. I will live with hives before I will take that much, that often, for that long again. This itching is driving me bananas though. Will keep you posted. How is it going for you Hairdoer? Are you taking it still and getting relief?

Navy

Thought I would post on here and let ya,ll know I am doing great on the sulfasalizine and the hives are getting less each day, and not one the past few days so I guess I will just stay on this longer this time and hopefully break the cycle for good this time. I am looking forward to summer this year because I won't be so worried about going swimming and having hives everywhere. Maybe I can actually do some more wakeboarding and my vacation won't be ruined because I can't walk and It will be so much better!! I am soooooo ready fo spring and school to be over so I can go out and PLAY with my kids!!! Will be so nice to not have my life ruled by how much fun I am having one day and not have to sit and watch from the sidelines. We may actuallu go snowskiing next year too!! I have high hopes anyway. :D

Hairdoer,
Just be careful. I didn't have them go completely. I still got them if I wore a regular pair of jeans or was too active. Is your doc checking your blood (cbc, lft, kft and a gpd-6(i think that is the test) and rbc's) because this is very important? Also are you taking folic acid specifically? It is depleted by sulfa.

Let me know. I was lucky since they didn't bother to check me until I found this doc and had no problems but it is possible.

Navy

HI all,
Not exactally the proper heading to tell this under but I finally got approved for disability retirement which should make ssd more attainable. I announce this because the more who get ssd under our conditions (although I have more than hives) the more they will give it in the future.

Take care,
Navy

Just an update. I am now on 1 gm a day of sulfa and I am not as itchy. It really works if you are able to try it. It doesn't cure but it sure makes it more bareable. Navy

I am doing so much better too. I know it is not a permanent cure but it sure is nice to live normally and not be miserable all the time too. I just have trouble remembering to take the medicine. Hard to think about taking it, and I am suppose to take 4 pills a day and since I am not all hivey all the time it is just not at the top of my list to remember all the time. I think I only took it once today and it is after 10 now. I am not that great at remembering vitamins either but I think I am doing ok anyway. Good luck to ya Navy!!! I have had no side effects either!!

Hairdoer,

I take 2 at a time so I don't have to take it as often. I can't stress enough the folic acid. If you take any vitamin at all take that. The med actually depletes it from your system and women need more than men as it is. Also, you never answered if you are gettin blood tests? This med is not real easy on your sytem and some docs don't do what the drug requires unless you point it out. Let me know if you had/have your lfts, kfts and cbc's done. It should be monthy for 3 then quarterly for 3 then yearly.

Navy

yes, I take Folic acid and daily viatmins. And No, I have not gone back for the bloodwork yet. I know I am a bad, bad girl. Or maybe I am just a big chicken!! I hate needles!! :yawn: :eek: I need to make myself find the time to go do that soon. My DOC will probably take twice as much blood from me now. I also am due for a few other things too. Just not my favorite thing to do, ya know! :rolleyes: I will make an appt. to go in sometime this month...........Thanks for asking too> :)

I hope you do. You don't need other problems on top of the hives just because you failed to get your blood checked. It is very important while taking this med and even though I don't know you I still care what happens to you because I know your suffering. Navy

Ive been taking antihystamines (product called Telfast) to stop my hives. And it works great, im taking about half a pill every 24hours, when the symptoms start to get out of control.

However im not all that happy about taking these on a permanent basis, so im hoping to find a more permanent solution soon. I believe my issue is Candida, which is different to you guys, but the Hives symptoms sound oh so familiar!

Hi, my name is Mary. My husband Jeff has DPU. He has had it for about 1 year now. I have been reading all kinds of message boards trying to educate ourselves and you guys seem to know your stuff better than others. I have been searching looking for "Navy". Reason being: I thought I read a post where you were trying to get disability for your DPU. I was interested in your journey. My husband is self employeed. We break horses, put up hay, raise cattle, pretty much the whole farm thing. He grew up on a farm. He is you typical big, strong, corn fed farm boy. Strong as an ox. So, you can imagine our community being told that he can't do things like changing a tire or pretty much anything he normally did on a daily basis because he is alergic to himslef and pressure!!! Boy the looks we have gotten! SO a year ago, after burning some brush from some trees we had cut down he started getting welps on his hands. Long story short.......He can't do anything that amounts to much pressure or he breaks out. In the mean time we have lost our small 80 acre ranch. Jeff has been looking for a job but all he knows is farm and ranch work. The folks that are hiring for these jobs are not willing to have him on full time because of his DPU. He has gone into anaplyaxis shock once already. So, does anybody know can the sufferers of DPU and their families get any help? Another question, since being "Blessed" with this DPU, my husband has a VERY HARD TIME BREATHING. If he does anything to get his heart rate up, he can barely breath. Its so bad now that even if we are just joking or horsing around, if he starts laughing, he goes into a choke grabbinb for the Epi-Pen. ANYBODY WHO HAS ANY IDEAS, I WOULD LOVE THE HELP...

GOD BLESS

MARY

Sorry that I dont have any solutions for you, but im sorry to hear about your husband, can you tell me some more details, like:
1) Whats does DPU stand for? (pardon my ignorance on that one)
2) Does he break out in Hives during an 'attack'?
3) Whats the delay, does it happen immediately or a few hours later?
4) Does he have a balanced diet, or is it really strong in anything particuar (i.e. breads/yeast, sugar, red-meat etc)?

Sorry for being evasive, I just felt so "at home" after seeing so many posts from people who have this stuff! DPU ....DELAYED PRESSURE URTICARIA. We all know that the welps or hives are caused by our bodies producing too much histimine. So here are some examples of my husbands experiences: If he changes a tire, gotta use the tire iron or impact wrench to remove the lug bolts, couple hours later his hands welp up. If he squats down to change the tire, a couple hours later his feet welp up from the pressure of squating down. We have horses, so if he rides two or more days in a row, then he gets welps from the saddle, on his legs, and on his hands from the reins. Also, his face and eyes will begin to swell, and as I said before his breathing is horrible. The only durg that has helped him is Prednisione. Which is a drug of death if taken long term. We have tried every other medication out there and my husband is not one to want to take meds every day for the rest of his life. It seems to take him 2 or 3 days to physically recover from even mild outbreaks, it seems to just do something to his whole system. That is why I was courious as to what was going on with "NAVY" since I had read about him trying to get disability. My husband is a self employeed rancher/farmer more or less and this DELAYED PRESSURE URTICARIA has cost us so much........I believe doctors for the most part
dont want patients cured, they want them to keep comming back and to ask no questions, cause at least with DELAYED PRESSURE URTICARIA, I have found that the doctors don't have answers. I have learned one thing about the way our medical system works and it is this....Being self employeed we do not have insurance. If we go to the doctor we pay the bill, it is always at the time of service, but WE PAY THE BILL..We have asked about having tests run, surely it seems there is some kind of test that should tell something but it doesn't seem necessary. Maybe its for the better because I have read a lot of posts and most usually a doctor can find 'SOMETHING" wrong with everybody if they look hard enough, but nothing ever seems to be associated with the URTICARIA. The funny thing is that the times when we have had insurance and would go to the doctor for the most common ailments, they are always wanting to run tests to milk money out of the insurance companies....OK, sorry about rambling. So, I am basically trying to find out if anyone A.) has severe breathing problems caused by the urticaria, my husband has not had good lung capacity since diagnoised with DELAYED PRESSURE URTICARIA, and it doesn't matter if he has welps or not, if he gets his heart rate up, laughing hard, running, anything really, he can not breath and is reaching for his epi-pen. he has never passed out from lack of air, but it is really scary to watch him gasping for air. The other thing I am looking for is B.) has anybody found that they are disabled due to this and is there any help. We have had lots of people say he should get on disability, but he's not disabled everyday. The rule of thumb with urticaria seems to be some days you can, then other days you can't cause you have to suffer. Some days he might be able to do several things and other days his feet might start swelling just from walking around a while. SO FRUSTRATING. Thanks for your time and response..
Mary

Mary.
I just wanted to say I am so sorry that your lives are being affected this way. I have had the hives everywhere too. Including my throat and have had trouble breathing but not so much as to have to use a epipen. Benadryl helps sometimes. I have not had them very bad since I take the Sulfasalizine. I really think it is worth him trying. I still work two jobs. I do not go on long walks or do much excersizing so my muscles don't get too stressed. I think I would also check into him having something else going on like asthma. Sounds like something different than hives in his lungs if this happens daily. Has he had any other tests? Has he had his thyroid checked? Don't give up on him yet. I used to only be helped by the predisone too. I took many rounds of it and as soon as I would taper off the hives would come back stronger. I hope Navy is still out there and can give you some answers. I have not seen her on here in awhile either. Good Luck!!

Thought I would revisit this post I did a long time ago in case this info might help someone. The sulfasalizine quit working for me and after now 4 and a half years of chronic hives, angioedema and delayed pressure hives I have found something new that has stopped the all over daily stuff, and almost completely stopped the presssure hives too. I will do a different post on it later but it definatly is a hormone issue for me. I know other women have similar problems like me so maybe this will get you into researching the connection too. Here is a clue......Autoimmune progesterone dermatitis.. Will do a new post later............ :D

I am back and hive free for 4 months now. The medicine that finally did it was called Danazol. Yes, I am allergic to my own hormones. Autoimmune progesterone dermatitis. Did the test to prove it and now I am off the medicine and the hives have not returned. My next option was a histerectomy. I will post more later. It is so great to have my life back. I am the one who found out the info and took it to my Dr. and said here, give me this test and then give me this drug. TA DA. Over one year on it and now off and free! Thank you GOD! :D :D :D :D

Wondering how many people on here who have chronic hives are female??
I have continued this disussion on another thread called hormone allergies. I know I am not the only one allergic to myself on here. It is a autoimmune disorder though and curable. There is a light at the end of the tunnel! :D :D :D

Wondering how many people on here who have chronic hives are female??
I have continued this disussion on another thread called hormone allergies. I know I am not the only one allergic to myself on here. It is a autoimmune disorder though and curable. There is a light at the end of the tunnel! :D :D :D

Hey there.. glad to hear you are hive free.. I have been for a couple of years now.. HAPPY FOR YOU HAIRDOER...
Hogan Grimm

did this sydnrome cause other allergy symptoms like running nose, and sneezing? what is the test for this?

I am female, i don't know if i posted in here, but i've had chronic hives for 5 years now, somewhat controllable by diet, i have a stong sensitivity to eggs fruits and pork and when i eat them i break out and have very bad running nose, sneezing etc.. usually worse the next day, but they dont' show up as allergies on tests so the allergist refuses to say its an allergy and instead says its autoimmune

Hello everyone I wanted to start on this message board because all of you seem to know and understand about the difficulties living and coping with dpu
I have always suffered with allergies and sometimes suffered with acute urticaria that would only last a few days or even hours at one time and would respond well with antihistamines,it would usually be caused by my own horses/cats/dust/plants/heat etc, but I have been able to live a normal life.
However 10 weeks ago I started to develop these hives all over my body that would not go away with the usual treatment, the worst places affected are my hands and feet, on xmas eve my hubby had to carry me into the doctors as both feet had swollen so badly I was unable to walk.
My doctor has been very supportive but was unsure why I was developing these hives all over and requested an urgent referral to see a dermotologist who diagnosed me with having chronic pressure urticaria, he had doubled my dose of loratadine and also perscribed me atarax for night, I have an epien also because I get them in my throat and they restrict my breathing.
Having been an asthmastic for years I am used to steroids and if there is no improvement then these will be used to calm it down, although I hate how I feel when I am taking them.
It upsets me so much when I read about how long so many has had this awful condition, I am an emergency response officer and now having difficulty in my job, one day I can be ok then the next just from being on mobile response I cannot walk through pain and swelling, I had been signed off a few times now and am deeply concerned about how long I can bluff my way through such a demanding position that I have been working for many years.
Basically all of this is making me depressed and suffering pain constantly is a nightmare, my children do not understand why mummy can not run about for them all the time and this causes bad feelings and makes me feel inadequate.
I am not here to give my sob story because I know that you have all been suffering with this for many many years and I dont know how you have got through, I am here to learn.
I have listed all the suggestions of medication that you have mentioned and will put these to my doctor in the future.
Could anyone suggest a good anti'imflammatory because diclofenac sodium has made me terribly sick also what would be good for all the muscle pain that I have had all over various parts of my body. Ruby