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Autoimmune Mast Cell Disease..Same as MCAD?? (Read 19060 times)
CrystalG
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Autoimmune Mast Cell Disease..Same as MCAD??
08/03/12 at 15:15:21
 
Has anyone been diagnosed with an autoimmune mast cell disease where antibodies are attacking the mast cells so they are constantly activated? Is this similar to MCAD?
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PJP123
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Re: Autoimmune Mast Cell Disease..Same as MCAD??
Reply #1 - 08/03/12 at 16:19:38
 
I just wrote on your other post.  Yes this is what I have and have not been able to get a single doctor to believe me that I have mast cell activation syndrome.  They just think I have itchy skin.

I feel sick everyday.  I take 150 mg. zantac, 150 mg. zyrted, 10 mg. singulair, use nasalcrom and ketotofin eye drops.  

It' so hard to find foods that you can eat.
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Starflower
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Re: Autoimmune Mast Cell Disease..Same as MCAD??
Reply #2 - 08/03/12 at 21:44:30
 
Autoimmune mast cell disease (auto-antibodies to high-affinity IgE receptors) has only been studied as the underlying cause of chronic urticaria.  There's no published research about it being a systemic disorder or part of MCAD.  I have both, however... and I really doubt they're not related.  So does my hematologist.

Heather
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CrystalG
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Re: Autoimmune Mast Cell Disease..Same as MCAD??
Reply #3 - 08/04/12 at 01:08:25
 
Guiding Light what are your symptoms like? I get burning and itching in my face, hands and feet and then I get hives all over my body and then my lungs, tongue, throat swell. I faint several times a day, get flush and intestinal pain when I do any physical activity, I get heart palpitations, severe intestinal pain for 4 hours at a time where I just live in the bathroom, joint pain, muscle pain, etc. They told me in the beginning that I had Chronic Idiopathic Urtcaria and Angioedema, and now they are saying Autoimmune mast cell disease where my thyroid antibodies are eating my thyroid, adrenal glands, possibly my ovaries, and definitely my mast cells. Are yours doing the same thing?

Heather I am thinking they must be related. If the auto-antibodies are attacking the mast cells so they constantly activate,this should be some type of mast cell activation syndrome because they are not activating properly. Im glad you found a doctor who believes this. I am finding so many doctors with their ego's so big who tell me im just a patient with no medical background.
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CrystalG
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Re: Autoimmune Mast Cell Disease..Same as MCAD??
Reply #4 - 08/04/12 at 01:28:50
 
Heather are your symptoms similar to mine? I usually need an epi for mine to go away, otherwise everything (hives, burning, swelling of lungs, tongue) will come back every hour for several days.
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Re: Autoimmune Mast Cell Disease..Same as MCAD??
Reply #5 - 08/04/12 at 03:59:04
 
When I first started going into anaphylaxis, the only medication I was taking on a daily basis was Synthroid (for Hashimoto's).  As I started adding other medications... H1 antihistamines... H2 antihistamines... Gastrocrom... Singulair... my attacks became a lot less scary.  The last time I used an EpiPen was in 2009.  I've also worked hard to figure out (and avoid!) my triggers and I'm now a lot more aware of the early warning signs of an attack such as dizziness, a gnawing feeling in my stomach, or tightness in my throat/lungs.  My mast cell disorder hasn't gone away, but I'm a lot quicker to treat the symptoms.  

I can tell you're in a bad cycle right now.  It takes time for your body to recover from anaphylaxis.  Triggering leads to more triggering Sad  Have you started taking any mast cell medications on a daily basis?  You don't need a doctor to try antihistamines.  They didn't get rid of my symptoms, but they did stop my trips to the ER.

Heather
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We're all in this thing together
Walkin' the line between faith and fear
This life don't last forever
When you cry I taste the salt in your tears
(Old Crow Medicine Show)
 
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CrystalG
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Re: Autoimmune Mast Cell Disease..Same as MCAD??
Reply #6 - 08/04/12 at 04:21:51
 
Heather, I have been on Clarinex, Veramyst, Singulair and Advair for years due to Asthma and seasonal allergies. After everything started to get bad, they also added Zyrtec double the dose, Ranitidine twice a day, Benadryl every 6 hours, Gastrocrom and Xolair injections. My attacks have started to slow down over the past 6 weeks, instead of weekly they are every other week, but I still have hives every day and get flush and faint several times a day. Have you tried Xolair injections? They say its supposed to help my hives and swelling of my lungs/tongue/throat/extremeties. How did you finally identify your triggers? Sometimes its just so random like I will be laying in bed watching TV and boom my face and extremeties are burning and itching and I'm covered in hives and my lungs are starting to swell. Can it just be random without triggers? I know that I have to take a cold shower otherwise I will get hives and faint, also being in the Sun sends me into a full blow attack, and tree nuts I am now severely allergic to. Other than that, I just have no idea.
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Starflower
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Re: Autoimmune Mast Cell Disease..Same as MCAD??
Reply #7 - 08/04/12 at 21:41:05
 
I haven't tried Xolair.  If I get desperate, my hematologist recommended trying Rituxan to get rid of the auto-antibodies that are triggering my mast cells and hopefully "reset" my immune system.  Dr. Molderings has a few other recommendations for people who are suffering from severe symptoms without sufficient relief from the standard medications:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/

I've also heard of people with autoimmune CU using cyclosporine or Cellcept as an alternative to steroids.  The ICUS list-serv is a great source of information.

Unfortunately, there's no short-cut to figuring out triggers Sad  My most recent one... latex and foods related to latex... took me more than a year to figure out!  The first bad reaction was at a children's birthday party.  Was the problem a chemical?  Mold?  I had no idea... just that I started feeling better as soon as I got outside.  

Sun is a problem for me too, although I'm doing better with it now that I'm more stable.  I wear long clothes at all times, so only my face, hands, and sometimes my feet are exposed.  I used to wash my clothes with SunGuard (made by RIT) to make them UV resistant, but now I'm fine without it.  I also use a strong, natural sunscreen (made by Aveeno) when I'm going to be outside for more than five minutes.

What time of the day was it when you had the attack while lying in bed?  Our bodies' natural histamine peaks around 2-4am.  I've had attacks where that was the only trigger.

Heather
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We're all in this thing together
Walkin' the line between faith and fear
This life don't last forever
When you cry I taste the salt in your tears
(Old Crow Medicine Show)
 
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CrystalG
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Re: Autoimmune Mast Cell Disease..Same as MCAD??
Reply #8 - 08/05/12 at 05:01:23
 
Thank you Heather, I will check this website out. It's good to hear that the sun is bothering you less. I cant have one inch of skin exposed at all. I look great going to the store when its 90 degrees out with a hooded sweatshirt with my hands tucked in and socks and sneakers and jeans. Even if my skin gets hot through the jeans or sweatshirt, I get an attack.

My attack while lying in bed was around 3pm in the afternoon. That is good to know about when our Histamine levels peak. My attacks have happened as so many different times of day, it's hard to tell.
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