severe chronic urticaria

[angel monkey]

I know how you all feel. Well, maybe not all of you. : I have had severe chronic uticaria for going on 5 years now. I have 2 kids to take care of and I am so sick of being drugged and tired all the time. I'm alway's worrying were the next hive will appear, since I get a lot of them on my face. They hurt and itch and I am so sick of it. Why can't all the doctors and allergists etc. at least act like they care and try to do something about all of us who are so missereable. I have been tested for everything, nothing comes up. I'm only 23 and don't want to spend my life like this, I don't want my kids to remember me like this either. Sorry I know I am complaining a lot when some of you have it worse than I do. It is just so good to tell people who actually understands. I mean, my husband is understanding, but he can never TRULY get it. So thanks for listening and let me know if anyone finds a cure. ANYTHING.

[ahimsa]

Originally Posted by angel monkey

I know how you all feel. Well, maybe not all of you. : I have had severe chronic uticaria for going on 5 years now. I have 2 kids to take care of and I am so sick of being drugged and tired all the time. I'm alway's worrying were the next hive will appear, since I get a lot of them on my face. They hurt and itch and I am so sick of it. Why can't all the doctors and allergists etc. at least act like they care and try to do something about all of us who are so missereable. I have been tested for everything, nothing comes up. I'm only 23 and don't want to spend my life like this, I don't want my kids to remember me like this either. Sorry I know I am complaining a lot when some of you have it worse than I do. It is just so good to tell people who actually understands. I mean, my husband is understanding, but he can never TRULY get it. So thanks for listening and let me know if anyone finds a cure. ANYTHING.

Thanks so much for posting - you put it into words so well. Like you, my case is "mild" compared to most of the others who post here about hives. But it's the not knowing that can make a person crazy. Not knowing why, and not knowing when, and not knowing when they start to flare how bad they are going to get and how long they are going to last. And lastly - am I going to live with this for the rest of my life? I imagine that this is (to some degree) what it feels like to be stalked.

I think the main problem with the medical community at large is that they just don't have the answers. I am fortunate enough to have a great doctor though - at least he admits his limitations and the limitations of his peers, is very sympathetic, and really listens to and works with me. He has ordered RAST testing when I demanded it, knowing that it was unlikely to produce anything clinically useful. I think he pacifies me for the *psychological* benefits. Negative data is still data, and still feels like progress I guess.

One useful bit for everyone tired of the drugs: I have found that the sedative effects of Benedryl fade away over time. My doctor has me on Zyrtec and Pepcid every day for the foreseeable future, and then Benedryl on top of that as needed. I have had many weeks of taking 75mg - that's 3 pills - every 4-6 hours. I was really doped of course when I started, but after about 2-3 weeks I felt absolutely no sedative effects. It probably won't work exactly this way for everyone, but I wanted to offer a small bit of hope.

Today is my first Benedryl-free day in about 3 or 4 weeks. I have weaned myself down over the last few days and have been symptom free for a couple of days. We'll see how long this lasts... At the first sign of itch or swelling I will start taking it again.

[snowbarbie]

Originally Posted by snowbarbie

I'm not sure I remember exactly how long it took to stop getting the hives completely after eliminating Tartrazine, but I think it was several weeks.

I went to my doctor two days ago, and he prescribed Atarax and Ranitadine, so now I have to wait and see if this helps.

So far, I only have the hives on the palms of my hands and I really don't want it to flare up into a full blown, full body giant hive - that really is not pretty! It may be 20 years since this happened last, but I still remember how awful it was. My face was so bad that my husband, who was a wonderful sweet man, did not want to be seen in daylight with me! Sometimes my face and eyes were so swollen that I had to wear dark glasses when I went to work; I'm sure some of my colleagues thought I had been beaten up, it was so bad. It was hard to explain that it was hives - everybody thinks of hives as a temporary, minor inconvenience, but we all know it's not.

Hello there,
I have taken the medication from my doctor for just three days now and I have had tremendous relief.

I took Atarax and Ranitadine together and the red blotches on my palms are still there, but they are only about 10% as itchy as they were last week. I have taken cool showers and have really tried not to scratch. Wish me luck folks!

[Sadlyn]

Originally Posted by HAIRDOER

[ QUOTE removed ]

Me too. Me too. I have the same thing except I have not had the dermagraphism. Mostly pressure hives and had them internally too. One night I had the worst heart burn of my life. Only time I have ever had that was when I was pg. Except that one night that I am sure was internal hives.
I have found one thing that has helped me better than any other anithistimines or any of the other meds you and I have both taken. I have been taking Sulfasalizine for about 10 months and I don't know why it works but it does. If I forget to take them, then I have hives. I do sometimes have delayed pressure urticaria but for most of the time I am hive free because of this medicine. You might check it out. It is used for Chrons patients.
I mostly wanted to let ya know you are not alone. I have been doing the same thing for almost 3 years. I have one question for you though. DO ya happen to have MVP? ( Mitral Valve Prolapse ) I have heard there may be a link. Good luck to ya!

Hi Hairdoer -

I developed Mitral Valve Prolapse after taking Phen Fen in 1997. I began to have hives probably in June of 1999. What is the Link between the two? I would love to read any info.

Thanks, Sadlyn

[HAIRDOER]

Hi all. Next week will be the 3 year mark for my battle with hives. I have been on tons of different antihistimes and all kinds of other junk that did not work and I can still report that the only relief that I get is from taking Sulfasalizine. I get some pressure hives ( DPU ) and certain times of the month can be kinda bad. I have a notebook of probably 50 pages of medical info and know more than I ever wanted to know about hives. Still no %100, never have another red itchy swollen place on my body yet.
I have an appt. with a Dermatoligist in December and I am going in totally armed and will not walk out without deciding on what the next step will be.
I do not believe this is an allergy, or a genetic disorder. I do not get hives from eating anything, or from soap, clothes detergent, or perfume. I do not get them from STRESS! I get them for some stupid reason and I am going to find a way to get rid of them for good.
I want my life back! I wanna go skiing, roller skating, ride bikes, go shopping, and just play without wondering if I am going to PAY for all the fun a few hours later by being swollen and unable to walk, wear shoes. I wanna wear a shirt tucked in and a belt! I want to be able to wear a bra that is not so loose and try on shoes. I want to play with my kids.
Some of the meds I am looking into helping me are strong and potentially very dangerous and I even hate needles. But at this point I am willing to tell them to put me through any torture, poison me with chemo meds and do a complete blood transfusion if needed. I am so done with antihistimines and hearing well, try this.
I have spent countless hours doing RESEARCH. I even understand the medical stuff now. I read stuff to my hubby and he looks at me like I am speaking a different language.
Here is some of the stuff I have read about.
Plasmaphoresis........Omalizumab. ( Xoliar ).....Immunoglobulin injections....Warfarin therapy ( Coumidin )....cyclosporin.......Methotrexate..... ..Azathioprine.......Desloratidine..gold ....Vitamin C......attenuated androgens......Dapsone.....Bioflavonoids .......Quercetine......digestive disorders......DNA Plasmid Vaccines.
Also...IgE- mediated processes....mast cells........angioedema.....Autoimmune diseases.. Immunosupressants like Neoral and Sandimmune....Dermagraphism......Helioba ctor pylori infections......High-affinity IgE..... molecules.........basophiles...........l ymphocytes........monocytes.........neut rophiles.....fibroblasts..........C3.... ..C4..... Corticosteroids.....H2 and H1 blockers........ASST.....( Autologous serum skin test )............and that is just the tip of all the stuff I have in my notebook.
For those of you searching like me. Keep looking and check out some of the stuff on this. You will be very busy. I am my own Dr. in my eyes these days. It is up to me to find the magic bullet.

Sadlyn....I do have MVP and I do believe there is some small connection but can't say for sure of course. Both have in common are autoimmune and the autonaumic system. I have seen several bits of info linking the two but no details yet.

If you right click on my user name on here and then you can read past posts by me for more info if ya want. I will post more in a few weeks. Happy Turkey Day to all !