I got my 4th xolair shot and left the out patient nursing. I got downstairs and started having symptoms... Flushing, feeling like I was passing out, chest pressure. I was taken to emergency room after I tried twice double doses of Gastrocrom (no help). I had emergency protocol paper with me. Of course they were not familiar with masto. So here's my question. I literally felt like I was dying ... But the nurse says my vital signs were fine. My blood pressure was extremely high. I felt like a zombie. They drug their feet giving me the drugs. (They were doing EKG, etc.) I had no swelling of throat. I guess I wondering what that was? I guess I'm starting to feel like everyone thinks I'm crazy. They did end up giving me everything but the Epi because of the high BP. Any thoughts?

Hi Star,

Sorry you had that experience!  You're definitely not crazy (or we both are!)!  It was likely an atypical anaphylactic (or anaphylactoid) event, probably from the Xolair or some ingredient in it.  I'm glad you're okay now!

I've had most of those symptoms during "episodes" except the chest pressure, but including flushing, feeling like I was going to pass out, seeing black blotches, high BP, but no breathing difficulty.  I don't get as many flushing episodes anymore, but when I do, I immediately take 50 mg. Benadryl, 40 mg. of Pepcid, 10 mg. Singulair, and a 10 mg. Zyrtec.  (Of course, there are other meds that would work).  I take the Benadryl because it's fast-acting.  I also get out my Epipen, just in case.  When I felt like I might pass out, I did the epi.  I also usually have tachycardia with it, but you didn't mention that.  It feels like my heart is pounding out of my chest.

Don't know if you've read about Kounis syndrome, but it's essentially a "mast cell heart attack," from the little I know about it.  There are a lot of mast cells in and around the heart that can and do degranulate.  It's possible that was part of what happened, although you can have very similar symptoms and it not be Kounis.  It's written up a number of places you can find on Google.  Ramona can correct me, because she knows a lot about it, but I believe quick-acting H1 antihistamines are the recommended first line treatment for it.  I don't know if H2s help, too, but I don't know that it could hurt either.

If I were you, I'd have my doctor write a very specific letter for you to carry that says exactly how to treat the symptoms you had.  The hesitation to give epi, as you probably know, was that your BP was very high and you were having chest pressure.  Giving antihistamines for those symptoms is counter-intuitive, and they wanted to rule out a heart attack before giving you something like epi that could make one worse.  

If your personal doctor won't give you a letter, a mast cell specialist will.  The one I got says to give antihistamines and epinephrine and that BP can be high or low.  I've thought about putting a letter into my file at the local hospital along with the Emergency Info packet so they'll have it if I every come into the ER.  As you might know, BP can spike and then crash, so an IV should be started immediately, too, just in case.

I think they'll discontinue the Xolair, but if they want to try again, be sure to have someone drive you to the appointment and keep somebody with you at all times for the rest of the day (at least), carry Benadryl and epipens, and pre-medicate a lot before the shot.  Those reactions can come on so fast!!

Hi Starfish,

Every time I see an "ER" post I just cringe!!  I am sorry that you had such an awful experience.  You certainly are not alone when it comes to being frustrated because you ask for the help you KNOW you need and the doctors do "what they have been taught in their medical books". It's tough on both sides.

Like Joan, I carry a letter that states what exactly needs to be done when I come in with a wide variety of symptoms.  My local doctor collaborated with my mast cell specialist and wrote a "revised emergency plan" based off the Mastocytosis site but tailored to what I respond to best.  Because I haven't been able to tolerate H1 blockers yet, and Ativan works well (they are willing to give it because they think I am having an anxiety attack).....my own doctors know that I respond well to a benzodiazepine blocker.  I have my Protocol in place at our three local hospitals. It comes up the minute they type my name and B-day in.  I also have an order from my PCP in place for the tests we need as mast cell patients "in crisis", along with an order for me to be allowed to keep my emergency meds with me if I need to be admitted to the hospital.  This has taken me months and months to accomplish.  After being hospitalized last summer, and leaving the hospital in worse shape than when I entered, I am on a mission!  

I didn't mean to hijack your post but I wish all mast cell patients (that don't live by our mast cell specialists), could have this in place so we can feel safe at a hospital!! The last thing we need is more stress and having to "prove" ourselves to every new doctor we come into contact with.

With that being said,  could you check to see if the Xolair injection was from a different company? Or as Joan alluded to, could there have been different ingredients in it? It would be sad to have to discontinue using a med that has been so helpful to you.

I cringed when you said they gave you something to lower your BP in the hospital.  Do you know what they gave you? That could have made you feel even worse.  If you are like me, you are used to having somewhat higher BP and so when it is low you feel like you could continually pass out...icky feeling!!

Do  you always have tachy and hypertension when you get so sick? When I end up in the ER, more likely than not, I have very high blood pressure....(sometimes it can be 240/150).  I have tachycardia and my chest is tight. If you don't mind my asking, do you have an autonomic dysfunction?  Do you know if you have POTS?  You mentioned you have tachy a lot.  Like you, I feel like I can control my mast cell symptoms on a daily basis but when my autonomic symptoms kick in, I feel like I am dying.  When you said you felt helpless, that's exactly how I feel. I have been diagnosed with dysautonomia but one of the specialists I see is almost sure I have POTS....so your comment made me think maybe it could be autonomic. Obviously I am not a doctor....just a thought. I hope you were able to get some answers when you called your specialist!

Take care......I hope you are better today!  Lynda

p.s. the Mastocytosis Society has a conract number for doctors and patients that can be used in an emergency.  It has a "message only" phone line where you can leave a message 24/7 and a Board of Directors member will reply or contact the necessary specialist on your behalf.  The number is :  909-206-2786 or 909-20-MASTO  
I'm not sure if it's new, but I found it on tmsforacure.org the last time I was on their site.  Hope this helps!

  Sorry you're feeling so miserable....
 
  Wondering if you might be interested in Midostaurin?  Don't know if you'd qualify or want to start something like that at this point, but I've heard it will be given to SM patients (in addition to ASM) once it's approved, and I think that will be fairly soon.

When ever I go-a-shocking, I usually get the "pass out" and flushing.  That's how it usually goes for me. Blood pressure drops, tachy sets in, get red all over, and feel like I am going to pass out (and I have before too).

I think a lot of people think that you have to have throat-closure for it to be truly a shock episode, but that is not correct. When the blood pressure drops out like that, you are shocking.  That's when you need to think about giving a pen.

Sad part is, a lot of medical people are under this impression too.  So sometimes, you just have to put on the educator hat.