Autoimmune urticaria anyone?

[jbaum27]

Looking to make friends with others who have autoimmune urticaria and share stories, symptoms, food for thought, etc. Anyone game?

[nmjennifer]

Just like many of others on this site, I have autoimmune diseases - thyroid diagnosed in1975, vitiligo started about 1990 and now hives that I have self diagnosed as autoimmune. I have been getting the hives for about 6 months now. I have traveled frequently during this time (environmental changes) and have eliminated many things in my diet but to no avail. I have appointments pending with dermatologist and allergist but feel this is to just to gain a few more opinions and maybe rule things out. I have always been healthy - stable acceptable weight, relatively active and for the most part eat healthy (usually cook at home). I have watched the Sick Fat and nearly Dead doc and while inspiring for weight loss it did't focus much on the urticaria, which was a different type than autoimmune. I am dealing best I can with the hives with occasional antihistamines but they have increased to the point they have significantly impacted my life style. I do not want to be on drugs that I worry will just cause more problems. I spend hours a day on the net looking for ideas. I am posting now with this in hopes of encouraging everyone to post any healthy option that works for you. Sounds like most of us are up for trying just about anything!

[kac800]

Dear all:

I feel your pain.  I am a mother of 10 years old boy.  My son has hive since he was 3 years old.  We try all the medication that you can fine in Walmart or Target or doctor.  He has been on drug(antihistamine) for every day for 7 years already.  It's breaking my heart when I hand him the medication every morning.
His case is VERY VERY VERY bad.  He has hive 24/7.  He can not live without drug.  I am very worry about all his body part because the long term medication.  He is very young and has long long way to go.
My mother has the same problem  but not that bad like my boy.  Not long ago she start to try one simply Chinese dish that people told her may be she will be cure.  
I finally cook for my boy but I really did not think this will be help.  Well, my boy already on drug for 7 years.  Not any Dr. can help beside just give him drug.  
After my boy start to eat this Chinese stir fry--chinese sesame oil plus chinese brown mushroom plus beef or pork every day for 2 weeks.  Something happens. I could not believe my eyes.  His hives improves a lots.  Again, I can not believe it!!  
I cook a small dish so he can eat few bits every morning every day.  I know it's grose if you eating the same thing every day.  But think about that. This is your medication every day.  Eating real food it's better than you are talking drug.
And I know this is not the "western food" that you used to it.  I am not selling any oil or mushroom or meat.  I post our story it's because it really helps my boy so far for now.  I hope this dish can help my boy for ever.  Not just short time.  It's worth to try.  
I am reading every one's story I feel very very sorry for you all.  I am oftenly blue and  depres because my boys hives.  
Please google Chinese sesame oil(or any sesame oil you can find), Chinese brown mushroom(or any  brown mushroom you can find, I some times buy the giant brown mushroom in Sams Club in veg. area ) and stir fry with beef or pork.  

Things you prepare:
Chinese brown mushroom
Chinese sesame oil
Beef or pork

Heat the sesame oil first than put the meat in and stir the meat until the meat is cooked.
Than put the brown mushroom in than stir every thing until it cooked.  Add more sesame oil if you need it.

Dear all, I hope this can help you.  You can take a break from drug.  Best wish to you all.

[kac800]

Dear all:

I feel your pain.  I am a mother of 10 years old boy.  My son has hive since he was 3 years old.  We try all the medication that you can fine in Walmart or Target or doctor.  He has been on drug(antihistamine) for every day for 7 years already.  It's breaking my heart when I hand him the medication every morning.
His case is VERY VERY VERY bad.  He has hive 24/7.  He can not live without drug.  I am very worry about all his body part because the long term medication.  He is very young and has long long way to go.
My mother has the same problem  but not that bad like my boy.  Not long ago she start to try one simply Chinese dish that people told her may be she will be cure.  
I finally cook for my boy but I really did not think this will be help.  Well, my boy already on drug for 7 years.  Not any Dr. can help beside just give him drug.  
After my boy start to eat this Chinese stir fry--chinese sesame oil plus chinese brown mushroom plus beef or pork every day for 2 weeks.  Something happens. I could not believe my eyes.  His hives improves a lots.  Again, I can not believe it!!  
I cook a small dish so he can eat few bits every morning every day.  I know it's grose if you eating the same thing every day.  But think about that. This is your medication every day.  Eating real food it's better than you are talking drug.
And I know this is not the "western food" that you used to it.  I am not selling any oil or mushroom or meat.  I post our story it's because it really helps my boy so far for now.  I hope this dish can help my boy for ever.  Not just short time.  It's worth to try.  
I am reading every one's story I feel very very sorry for you all.  I am oftenly blue and  depres because my boys hives.  
Please google Chinese sesame oil(or any sesame oil you can find), Chinese brown mushroom(or any  brown mushroom you can find, I some times buy the giant brown mushroom in Sams Club in veg. area ) and stir fry with beef or pork.  

Things you prepare:
Chinese brown mushroom
Chinese sesame oil
Beef or pork

Heat the sesame oil first than put the meat in and stir the meat until the meat is cooked.
Than put the brown mushroom in than stir every thing until it cooked.  Add more sesame oil if you need it.

Dear all, I hope this can help you.  You can take a break from drug.  Best wish to you all.

[margem8]

You need a different doctor. I've had CIU for over 12 years now. I too have taken every med on the market, including prednisone and triamcinolone injections. They're good for a couple of weeks. Yesterday I went to a doctor my dermatologist recommended. He is a molecular biologist, dermatologist and allergist. His name is Dr. Clark and he is here on Long Island. He specializes in CIU patients. He's done studies on the disease. I am thrilled that there is a doctor who knows, truly knows what we're going through. Although there is not cure, he will be using a combo of drugs which are known to calm CIU down, maybe even make it burn itself out. He explained that we carry certain proteins in our bodies(blood) which serve as a trigger for hives.
I hope you can find a doctor like I did and I hope your dermatologist will recommend you see a specialist. Most of these doctors are associated with medical schools and have done extensive work & research with CIU patients. Good luck. I care!

[margem8]

I've had this since 2001. It burned itself out in 2003 but I have had repeat outbreaks since then. My medications have included every steroid on the market, every antihistamine made and they still come. Yesterday I went to a new doctor who actually specializes in CIU. It's something in our blood friends, something we can't control, but something that can be controlled. There is no cure and thankfully we won't die from it. We may die from the drugs we have to take, but I'll risk that.
My latest breakout is on my FACE! It's horrible when I look at myself in the mirror and the face looking back at me has a wheal roughly 2" in length and diameter. That's in addition to the many individual hives on my face and lips. I look like I have the measles.
My new doctor has me started on Ranitidine and Doxepin. 4x's daily on Ranitidine and 1x daily of doxepin. If this doesn't work, and he's pretty sure it won't we'll use another combo. I feel more confident with him, knowing that this is his specialty and also molecular biology. He's also a board certified allergist. HE KNOWS our disease! My dermatologist referred me to Dr. Clark, since he felt I needed more than he was able to offer. I had to wait a month for an appointment with Dr. Clark and I'm glad I did.
CIU has caused me to miss many happy events in the last 12 years. Let's hope I don't have to miss more.
I look forward to hearing all of you are successful with your treatments. Until then, all we can do is hang in there. Be well.
Marge

[nnorcross]

I too have the Histamine induced Urticaria and Idiopathic Angioedema and was on an 18 month Medical Experiment of Xolair and after my 1st month on it, I was free and clear completely of any swelling anywhere. Now that my trial period is up, my cost is $1600 per month... I needed 2 injections per month.

I will admit, it was the best thing I ever had. I can only pray and hope that these pharmisutical companies will find a way to come down on the cost of this medication.

Good luck!!