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Old 02-12-2004, 05:32 PM   #1
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Smile What finally cured my chronic hives

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.

Last edited by HAIRDOER; 10-07-2007 at 09:28 PM. Reason: that fdrug stopped working and now after a new medicine.....I am hive free. Read to the end!

 
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Old 02-14-2004, 02:17 AM   #2
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Re: What finally cured my chronic hives

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

 
Old 02-15-2004, 10:13 PM   #3
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Re: What finally cured my chronic hives

Quote:
Originally Posted by Imjustwondering
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.
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!!!

 
Old 02-16-2004, 07:38 AM   #4
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Re: What finally cured my chronic hives

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
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Old 02-16-2004, 06:34 PM   #5
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Re: What finally cured my chronic hives

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..

 
Old 02-16-2004, 09:48 PM   #6
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Re: What finally cured my chronic hives

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.

 
Old 02-17-2004, 06:39 AM   #7
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Re: What finally cured my chronic hives

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
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Old 02-17-2004, 07:11 AM   #8
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Re: What finally cured my chronic hives

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.

 
Old 02-18-2004, 06:26 AM   #9
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Re: What finally cured my chronic hives

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
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The answer has got to be here somewhere.

 
Old 02-18-2004, 12:28 PM   #10
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PinkBanana HB User
Re: What finally cured my chronic hives

Quote:
Originally Posted by 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.

 
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Old 02-18-2004, 01:13 PM   #11
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Re: What finally cured my chronic hives

Quote:
Originally Posted by PinkBanana
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

 
Old 02-18-2004, 04:05 PM   #12
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Hogan Grimm HB User
Re: What finally cured my chronic hives

Quote:
Originally Posted by PinkBanana
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
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The answer has got to be here somewhere.

 
Old 02-19-2004, 05:00 AM   #13
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Re: What finally cured my chronic hives

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

Last edited by uz2bface; 02-19-2004 at 05:07 AM.

 
Old 02-19-2004, 05:12 AM   #14
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Re: What finally cured my chronic hives

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.

 
Old 02-19-2004, 09:51 PM   #15
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Re: What finally cured my chronic hives

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. Life is still great!! Well, mostly great.

 
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