Urticaria and xolair

Hi Diotima

i unfortunately HAD to go on Xolair injections as my urticaria was so severe nothing worked and I was in and out of hospital and did nothing to relieve the horrible discomfort. As I comments earlier I don't know if the Xolair will kick in and help me but it is better even though I still break out every night......I do want to try the  Quercetin supplement...what mg? How many Zantacs do you take with the fexofinadine?

thank you

Wendy

Hi Wendy,

You can take up to 500 mg of Quercetin per day, according to my allergist.  Some versions come with vitamin C, and some add bromelain, or other ingredients.  I like bromelain too, but that's not supposed to be taken indefinitely.  

Re Zantac, I'm on a minimal dose (75 mg once a day).  But folks here have recommended it somewhat more liberally.  (Please check the other posts.)  Interestingly, it's an antihistamine, and differs in function from fexofenadine, so supplements it.

I've had no side effects from the Quercetin/Allegra/Zantac trio.  (I take Allegra and Zantac at night and Quercetin in the morning.)

Please have your vitamin D level checked, if you haven't already.  Remedying my deficiency there made all the difference to me, and studies have shown that many CIU sufferers have low D blood levels.

All best,

Carol

p.s.  While I was still actively suffering, I also took one of the hist tame type pills when I had a glass of wine or other fermented food item, as well as other histamine loaded foods.  Now I don't find that necessary, but it was helpful at the time.  They're expensive, but worthwhile.

Hello

thank you for your reply..I think it is so important to share with each other. I am currently taking Vitamin D2 50,000IU once a week as s I was low.  Did not see any change but still taking them. How long have you had the hives and is this your first time with them?  Do you think the Quercetin is what helped you the best? Should I get without the bromelain to start...which works the best?  I hope I can take it along with the Xolair shots? The Zantac over the counter comes in 150 mg.  I'll try the Allegra and Zantac tonight ;-)

All the the best to you too!

Wendy

Hi Wendy,

How long have you been taken the Vitamin D?  It normally takes a while to get better from that deficiency.  The standard dose you're taking is for 8 weeks.  I had the hives for quite a number of months overall.  (Yes, was my first time, but a very bad case.  Took prednisone to get rid of them, but they came back.) I experienced a gradual improvement with the D supplement.  (In the studies, improvement was felt after about 4-6 weeks on avereage, I think.) Now taking D3 2000 every day.  (I don't want to go back to a deficient state.  Also don't have much sun access. D3 is much better than D2 for the longer term, but the prescription is always for D2).

Yes, I'd recommend the quercetin with the bromelain and C (it comes that way) for a while.  Allegra 180 and Zantac (I think the Zantac is supposed to be taken twice a day).  Check out the various hist tame supplements, which provides an enzyme that counters histamines from eating.  Useful if you're having a reaction to those.

I did a ton of research, and found these things worked for me.  But not sure it works for all cases.

Good luck!  

Good Morning Carol

I have been taking the Vitamin D2 for several weeks and have a few more to take before going to the D3 2000.  I'm going to email my doctor this morning about wanting to start taking the Quercetin.....it is so worth a try.  Hopefully she will not say no as I am taking the Xolair shots and could affect outcome. I will search it out at Whole Foods..they should have it.  I had a night of more hives to wake up to...very discouraging..that's with taking Allegra 180. Mg and Zantac 150mg before I went to bed.  I am wondering though..I had spaghetti last night with tomato sauce...I'm sure that did not help! I took my morning Allegra but think I will add additional Zantac this morning as well. I need to know the foods I CAN eat.

I wish I would have tried the Quercetin before the Xolair shots but the hives were so severe the doctor said I have not other choice than to try the shots.  I'm committed to the shots now. Someone else blogged about Quercetin as well.

I just pray my body will heal and these hives will go away! HEAL not a bandaid. ............

thank you for your reply!

Best wishes,

Wendy

To my knowledge, quercetin is benign, so should be OK.  It's an ingredient in foods and up to 500 mg is not supposed to be dangerous.  But I guess you should check.

There are lists online of low histamine foods and high ones.  They're not based on measurements in most cases, but on anecdotal evidence.  Still, would be worth a try to go to a low histamine diet while you recover.  Check out the hist tame supplements (just an enzyme, to counter it).  It is composed of diamine oxidase, which one needs to block histamines, and it supplements our natural production of that enzyme. That would enable you to have tomato sauce without as much of a reaction.  

If you google histamine intolerance, you will find some food lists of low histamine foods and other foods that you should avoid.  Unfortunately, quite a number of healthy foods are on the avoid list, but it might be worthwhile to follow that sort of diet for a while, until you get better.

I trust that your doctor has checked for other possible systemic causes of the hives.  Though unlikely, some are serious and need prompt attention if present.

Hope they go away pronto!

Thank you so much for your wonderful recommendations!  Natural as much as possible is the way to go (sounds funny coming from someone getting Xolair injections😄).  But as mentioned it was needed at the time as hives were out of control.

Did some research on Quercetin.....I will add at little more red onion to my diet as well...good thing I like them!  I will check out the low histamine foods and try that for awhile...fun...fun I know that list is not appealing. I do love salmon so that is good. What is bad are things I love like Chocolate..coffee are not good. I wonder if decaf coffee is okay.  My husband and I drink that for his health issues.  Maybe tea is a better choice though.

My Allergist/ Immuologist did blood work on me...what other tests should she have run?  In doing some research some doctors do a biopsy?? hummmm..

Do you live in the U.S.? Many on the blog are from Europe. Hives affects us everywhere.

thank you again Carol!

i hope they leave pronto soon too!

Hi again Wendy,

Yes, I live in New York City.  You might check out the references on pubmed (scientific studies from the National Institutes of Health--just register for it; it's free).  Of course, you need to be sure you don't get frightened by anything there.  (And remember that statistics don't apply to any particular individual).

The blood work should have included the needed tests.  I know there are autoimmune causes of this, but it's thought that those affect considerably less than half of cases (some posts here to the contrary).  Some other disorders can cause them, including thyroid disease, but you probably had tests for all of those, if you had the standard U.S. hives work up.  (Did you go to an allergist/immunologist?  I personally think that would be better than a dermatologist for this, though both specialties are probably better than a primary care physician. ) Remember, though, that they call it idiopathic for a reason!  Most cases don't have an explanation.  I was lucky to find the severe D deficiency, which was also liable to cause other trouble, had I not caught it in time.  I'm feeling better all around now, having gotten it up to a respectable level (that takes time).  By the way, improving the D helps with hives even if it's not the main cause (though it likely won't make them go away completely in that case).

Best of luck and let me know how it goes.  I spent countless hours reading about CIU and trying different things.  I think the diet will help you (it helped me while I was in the throes of it).  And here's a tip-- When you're a bit better, and if you like wine, you can find some without added sulfites. (Of course, all wine has some naturally occurring sulfites.)  The main diet emphasis is to keep stuff very plain.  Avoid most additives and such.  Fermented cheeses and vinegars and such are a no-no.  But check out the diamine oxidase supplement.  Helpful if taken within 15 minutes of starting to eat.  Thankfully, I no longer need them.  

But every case is different.  Best of luck and let me know how it goes.

Hello again!

i just got back from Whole Foods here in Virginia.  There were several kinds and brands of Quercetin with different ingredients and mg. One brand has additional Acerola, Rose Hips, and Rutin along with Vit  C Bromelain, citrus Bioflavoniod Complex.  What brand do you use?  I can go on Amazon as well.  It's nice to have a recommendation.  

My doctor is an Allergist / Immuologist. She has CIU patients but I don't think she specializes in it. Highly recommends the Xolair.

I read today that low histamine diet is good but need to have a balance.

I grew up on Long Island in Wantagh and have family living elsewhere on the Island.

wendy

Emis Moderator comment: I have removed product/company names as we do not allow repeated posting of these in the forums. If users wish to exchange these details please use the Private Message service.

http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

Hello Carol

i sent you a message yesterday (below)....they had to take out the brand name that I mentioned...did not know.. I guess we would have to do the Private Message to mention Brands.

i hope you have a nice day today!

Best, Wendy

Yes, I saw the problem (and when I mentioned a brand once before, they also edited it out).  I'll try to reach you by private message

Hi Diotima:

I have been diagnosed with this awful disease a year ago with a skin test, I have never heard of Quercetin helping, I am at the moment on vacation and no longer go outside, this week has been the worst outbreaks I have ever had.  can you tell me more about Quercetin?  I looked it  up and it doesnt say it is for Uritcara.  Can you fill me in some more, looking for some relief.

 

Hi Debbie,

Quercetin is supposed to help stabilize the mast cells, which run amok and produce hives.  it's just a part of treatment, but I've found that it helps.  Either 250 mg or 500 mg per day (not more).  You can get it combined with some vitamin C (which makes it more effective) or with bromelain (an herbal anti-inflammatory), or just by itself. Non-prescription supplement. I take it in the morning.

All best,

Carol

Thank you so much, I will purchase it in the morning. Need to try something to get relief

Debbie

Hi Debbie

how are you doing with the Quercetin?  Have you tried it yet?  Is it helping to rid of the hives?  I want to try it after I stop current medication.....sounds promising ........and natural!

looking forward to hearing back from you.

Wendy

Hello Debbie

just checking in to see how you are doing with the hives and to see how the Quercetin has worked for you.

look forward to hearing from you!

thanks

Wendy

Hi Wendy, no unfortunately it hasn't worked but I am still taking it along with vitamin D. I will continue looking for a cure. Because I live to be outside and staying inside this summer was a bummer after the nice summer we had.