Since my doctor is recommending this for me, I wanted to hear your final opinions.

I have neither hives nor asthma (that I know of), so this would be a challenge, getting insurance to cover it.

At this point, if I can do something to fix myself without the injections, I'd prefer that.  I am scared to take a medicine that can suppress the immune system.

I am glad that you gave your opinions.  Thanks. Your link to the Reuters article did not work for me.

When I had seen the part about suppression to the immune system so as to possibly contribute to cancer, it scared me.  I had a cancer diagnosis 43 years ago (thyroid), and I do not feel like being a guinea pig to see if it comes back.

If you are willing to, can you share some of your really bad mast cell symptoms that you were trying to remedy with the Xolair?  I am curious because  I do not have itching, hives or asthma and you said you did not have those either.

One of my major problem right now is my GI tract from top to bottom, seems to be reacting to just about everything I eat.  My bladder is reacting as well. I have interstitial cystitis or painful bladder syndrome  This makes eating a challenge. I have burning and pain from way too many foods to mention.  My immune system is in overdrive. So I definitely need help from somewhere.

I was given a list of foods supposedly high in histamine to avoid.  Also, I was given another list showing foods that people react to who have "oral allergy syndrome" (OAS).    OAS means that if I am allergic to ragweed pollen (which I am), then I can cross-react to banana, kiwi and a bunch of other stuff I cannot remember right now.

The bottoms line is, I was sent home with these two write-ups of what foods to avoid.....which really has left me high and dry.  There is not really much left that I can eat safely.

For example,  I am supposed to eat only freshly killed meat or chicken. That means that if the animal was not just butchered today right before eating, then it must be in a frozen state.

If meat or poultry is refrigerated, the histamine content rises.   Well....come on.  I am not living on a farm.  Furthermore, I do not eat red meat.  The poultry I get is NOT frozen.  It is refrigerated at the store.

Bottom line is.....it is very stressful to a patient who is suffering to send them home with lists of what to avoid eating to the point of starvation. And I am that stressed out patient.

Every day it is a struggle to get enough calories in me.  I can only eat a certain amount of veggies a day, and they are not calorie-intensive by any stretch.  Since butter and peanut butter and other nut butters bother me, the only thing I can eat to increase calories is Breyer's vanilla ice cream, and Udi's gluten-free blueberry muffins.

I am really not supposed to be eating blueberries or too much sugar, but I can't starve to death.

I would love to know what people juice and whether there is any calories from that?  I usually am no good with intensive protein powders to add to the juice.  So, if anyone knows what foods people juice, I'd love to hear it.  

Here is another article that explains things a bit more.



The FDA has announced in late September that it is adding a warning to asthma drug Xolair’s label. The disconcerting warning suggests that Xolair slightly increases the risk of suffering from heart attacks, mini-strokes, and blood clots in the lungs and veins.

Since its approval in 2003, the injectable drug omalizumab has helped thousands of patients over the age of 12 whose asthma is not well-controlled with corticosteroid medications. The drug, better known by the Xolair brand name, is also now approved to treat chronic hives.

In many cases, Xolair has shown life-altering results: sufferers of severe asthma who found stair-climbing challenging became runners, while those suffering from debilitating hives became clear-skinned.

The new warning is based on a five-year study submitted to the FDA by the drug’s manufacturer, Genentech, and 25 clinical trials comparing Xolair to a placebo. This safety study comes with a mix of good and bad news for Xolair users. Apart from the slightly increased risk of cardiovascular and cerebrovascular problems, the study did find that patients getting the drug injections were no more likely than those not taking Xolair to develop cancer. This contradicts previous clinical trials that have shown higher cancer rates associated with Xolair use. (The FDA cannot rule out the risk of cancer, though.)

The FDA warns that although the studies’ findings are “suggestive of a serious safety signal,” they are “unable to definitively confirm or determine the exact increased level of these risks with Xolair.” It seems the study had execution and design issues that hamper the analysis of its results.

“Several differences at enrolment between the two treatment groups make it difficult to evaluate the higher numbers of subsequent heart and blood vessel problems in the Xolair-treated group,” an FDA press officer explained to Allergic Living.

Xolair works in allergic asthma by neutralizing the IgE antibodies that set off allergic reactions. Currently, it is not approved to treat other allergic conditions.

However, a few leading researchers have been using Xolair in food allergy oral immunotherapy (OIT) trials. It is being used to decrease symptoms, so that patients’ immune systems can more easily begin to accept their trigger foods.



http://allergicliving.com/2014/10/09/fda-adds-warning-for-cardio-risks-to-asthma...

Futurehope,

I was having problems in March--couldn't stop having reactions even eating my safe foods.  I found out my generic Zantac formula was changed from iron oxide red to the blue, red, and yellow food dyes and I didn't know it.  I was reacting to the yellow dye in the medication.  I couldn't believe how sensitive I was to something in such small amounts, but am learning that fillers apparently do REALLY bother me.  Allegra works, not Zyrtec (filler bothers me), brand name Zantac works, etc...  

Also, the juicing can be any vegetable or fruit you tolerate; lettuce, carrots, apples, etc...

I got that low histamine list too.  It helped give me an idea of what I could eat, but I wish I never would have stopped eating some of those foods.  Now I can't add them back in without problems.  I've received several lists from my doctors and have thrown them away.  I eat bananas, mushrooms, and chocolate everyday (without getting symptoms), and those are supposed no-no's.  But if I eat a spice, God help me.  We are all different, and don't starve yourself based on a list.  You have to trust yourself and figure out which things are truly triggering you.  Is it meds?  Food? Cold? Heat? Stress?

I've also found that there are times when I NEED to lay down and rest or I have a lot of POTS-type symptoms, but there are days when I react and I have to move around or I get sicker.  Activity that you tolerate can help burn up the histamine.  Listen to your body if you can, and are you keeping a journal at all?  I really hope you feel better--Sarah

Hi, Ladybug2.....Nice to have you back. And happy and healthy new year to you.

Are both Dr. Afrin and Dr. Castells taking care of your case?  Just curious.

As of right now, nothing has changed in my condition.  I am sometimes entertaining the thought of seeing Dr. Castells because living with my constant reactions is difficult. Thankfully, I do not wind up hospitalized or close to death because of my reactions, but living my life is a challenge.

If you get a chance, can you tell me what symptoms Xolair has improved for you?  tnx