Mast Cell Disorders Forum

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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Medicines >> Confused about diagnosis? Question about xolair http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1382755917 Message started by brigitte on 10/25/13 at 15:51:57

Title: Confused about diagnosis? Question about xolair
Post by brigitte on 10/25/13 at 15:51:57

Hi all! So Dr. Chin diagnosed me MCAS in late July by my symptoms and high chromogranin a. I tried both cromolyn and ketotefin (I gave them both a fair chance), but was unable to tolerate either. Cromolyn exasbutsted my gi symptoms and I was throwing up everyday for a month, and ketotefin caused me severe angioedema, so I had to stop it immediately.
So, back to square one. And I am questioning...do I have MCAS? I was tested positive for the antibody which causes autoimmune urticaria in 2010. It was all my other symptoms besides the hives (which I very rarely get these days) and the angioedema (which is usually localized on my cheeks, lips and gums these days. The antihistamines seem to keep the severe swelling under control) that had me thinking MCAS. The "panic attacks", intolerance to frangrances and salicylates, the fight or flight feeling, the gi issues, dizziness, irritability during an episode. All that. So I was wondering if all these symptoms can also be part of autoimmune urticaria. I cannot find any literature about this. When I google AU, all I can find as symptoms are hives and angioedema.
So.....I emailed Dr. Castells. What and amazing woman. She doesn't know one thing about me, but took the time to write me. I told her my story and took a picture of my labs confirming my AU diagnosis as well as several inflammation markers. She said that my symptoms were NOT constisant with MCAS, but with "autoimmunity" and highly suggested looking into xolair.
I trust what she says as a highly regarded doctor, but it just confuses me because at the end of the day, it's all mast cell degranulation right?
She didn't get into the insintricities of my symptoms, but did say that xolair could help either elivate many of them, or at least calm them down.
But my mind is still somewhat wrapped around the idea of MCAS since my symptoms match up so well. So I guess after all this rambling, my question is this....has anyone with masto or MCAS ever taken xolair? If so, did it help?
Has anyone with AU had all these symptoms too?

Title: Re: Confused about diagnosis? Question about xolair
Post by Starflower on 10/26/13 at 03:35:26

Xolair seems like a good thing to try... if you can get a local doctor willing to battle with your insurance. (It's expensive, and treating MCAS is an off-label use).

I'm also wondering... have you ever been tested for Hereditary Angioedema (HAE)? It's not hard if you can find someone who knows what they're doing. Just a blood test. If that's a factor in your case, there are some excellent treatments and support for people with angioedema caused by HAE. Here's a good place to look for more information: http://www.haea.org/ They might be able to help you find a local doctor.

I've had some problems with abdominal angioedema, but I ruled out HAE as the cause.

Heather

Title: Re: Confused about diagnosis? Question about xolair
Post by brigitte on 10/26/13 at 06:45:11

Thanks for your reply Heather ;) yes, I have been tested for hereditary angioedema. That is actually how I found out I had autoimmune urticaria. Because of my swelling and hives, I qualified as part if a pharmaceutical study for HAE. To my benefit, they study checked for everything. That's how I found out I did not have HAE but that I did have AU.
So I'm now, especially after Dr. Castells recommendation, going to look into getting the xolair shot. At this point, it's my last option. Hopefully the best was saved for last!
I just hope that it will help with issues other than hives and swelling.

Title: Re: Confused about diagnosis? Question about xolair
Post by legd on 10/26/13 at 08:53:59

I think the difference between the two is the mechanism leading to the symptoms. Allergies, asthma, and autoimmune urticaria (for instance), trigger mast cells through mediators -- IgE antibodies. Mast cell reactions in MCAS and mastocytosis don't go through the IgE mediator. Instead, the mast cells degranulate on their own. Xolair is an IgE antibody which acts on the IgE allergic cascade, reducing the free IgE levels, so they don't trigger the mast cells.

The mast cell meds mostly deal with the chemicals released after the mast cell has degranulated (e.g. histamine, prostoglandins, leukotrines, etc.). Chromolyn and Ketotifen help stabilize the mast cells, but they aren't perfect. But if your reaction is autoimmune, it is possible that Xolair could stop the reaction before it even starts, because the mast cell needs to be 'instructed' to degranulate by the IgE antibodies, and Xolair substantially stops the IgE antibodies before they get to the mast cells.

I am not a doctor. This is from reading scientific articles online. So the explanation might not be exactly right, but I think it captures the basic concept of why autoimmune is different from mast cell disorders, and why it might be medicated differently.

I hope this helps.

PS If Doctor Castells sounds definitive on this, I would trust her. She's probably the most knowledgeable doctor you've had looking at your symptoms. And while we can compare a list of symptoms to an online list for a disease and have it look similar, we don't have the experience she does in seeing and teasing apart the specific patterns and constellations of symptoms that mark off one disease vs. another.

Title: Re: Confused about diagnosis? Question about xolair
Post by brigitte on 10/26/13 at 14:54:26

Thanks for the excellent explanation legd! I've never understood, but that makes perfect sense! I get it! It also makes me hopeful for xolair! If it helped, it would be an absolute miracle for me. I desperately need a break from constantly triggering:-/