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mast cell issues

Daisydoodle86Daisydoodle86 member
in High-Risk Pregnancy
Any ladies here with mast cell issues? I'm having difficulty finding any pregnancy answers for this rare disorder and I'm freaking out a bit. I have an appointment with a MFM specialist in a few weeks but I'm pretty sure they're just going to say "huh? Never heard of it".

Any information is welcome, from birth plan strategies to use of antihistamines and mast cell stabilizers during pregnancy and breast feeding.

TIA! 
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Re: mast cell issues

  • JessTy3JessTy3 member
    Would this be similar to chronic hives?  If so, I know too much from personal experience.  If the same...  Let me know!
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  • Daisydoodle86Daisydoodle86 member
    Chronic hives are a huge part of it! I also deal with a number of other related issues-- idiopathic anaphylaxis and symptoms related to mast cell degranulation. Any info you have would be so helpful! Thank you in advance!
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  • JessTy3JessTy3 member
    I've had chronic hives and angioedema since November...  What a nightmare!  So sorry that you're going through this.  Thousands of hives  and swelling daily.  I had a miscarriage back in February and now I'm 12 weeks pregnant.  My hives significantly improved during both pregnancies.  I hear that pregnancy can improve autoimmune diseases.  I hope this happens for you.  I also take 2 Zyrtecs and 2 Zantacs daily - I have spoken to many doctors and they are all ok with these meds.  There is a chronic urticaria private Facebook group that has been amazing.  You might want to look into it.  How long have you had this for?  Thinking of you!
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  • Daisydoodle86Daisydoodle86 member
    Oh my goodness! Congrats on making it to 12 weeks! I just got there myself on Monday!

    This has been going on since December! My doc had ruled out autoimmune diseases and is looking into mastocytosis and mast cell activation syndrome. My hives are finally under control but I'm still having angioedema 3-4 times per week. I'm seeing an MFM tomorrow because of the anaphylaxis risk and huge amounts of antihistamines that I'm on. (2 allegra, benadryl and pepcid around the clock/as needed) Yuck! I'll look out for that fb group, thank you! You may want to check out the Mastocytosis Society group and Mast Attack group on FB, if you're still trying to determine the cause of your hives :( sometimes a mast cell stabilizer is helpful? (The I've I tried wasn't unfortunately).

    I hope your itchiness and swelling disappears soon! Fingers crossed for you! 
     
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  • JessTy3JessTy3 member
    I'm not very familiar mastocytosis and mast cell issues.  Do you have other symptoms besides the swelling and hives?  All your doctor about Zyrtec versus alleges...  I think there might be more research regarding Zyrtec and pregnancy.  Also, is the anaphalaxysis related to the angioedema?  Had it actually ever happened?
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  • Daisydoodle86Daisydoodle86 member
    I have a bunch of seemingly unrelated symptoms (unless it is mastocytosis). Zyrtec didn't help, but my MFM said the allegra is fine, and wants me back on benadryl around the clock as well.

    I'm not sure if the anaphylaxis is related to the angioedema but I've had 4 episodes of it, prior to switching to the allegra. I have my consultation for my bone marrow biopsy this week, so hopefully some answers soon!
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  • expandcontractexpandcontract member
    edited August 2016
    @Daisydoodle86 how are you even functioning during the day while taking Benadryl? This may seem like an obvious thing but have you had your hives biopsied? 

    Edit: words


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  • Daisydoodle86Daisydoodle86 member
    edited August 2016
    Haha, it took a long time to build up a tolerance!

    So they haven't biopsied anything yet. I have a bone marrow biopsy at the end of September, which will hopefully rule out mastocytosis. I'll ask about hive biopsy- none of my doctors suggested it. Thanks!!
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  • expandcontractexpandcontract member
    @Daisydoodle86 any update? I'm just curious.  I broke out in hives earlier this year and back in 2012. In 2012 that never figured out what it was but it eventually went away when I moved to LA for a while. Came back earlier this year.  Only when I finally had a biopsy of one of the hives were we able to know that it was due to bed bugs!! Apparently, I get severe reactions from their bites. 


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  • Daisydoodle86Daisydoodle86 member
    I'm still waiting for my biopsy, they'll do it at the end of September. They've determined it's not a typical allergic reaction, meaning it's not any one thing causing mine (bed bugs, specific food). Hopefully the biopsy will tell us whether or not I have a genetic mutation causing the reactions. If it's a no, I think they're assuming it's just an autoimmune thing.

    Glad to hear they figured our what was causing your hives! They are so miserable!
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  • UpstateBabyUpstateBaby member
    My two year old daughter was diagnosed with mast cell disease a few months ago and I would love to hear about your experience since so little is known! Please any information would be appreciated. 
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  • Daisydoodle86Daisydoodle86 member
    Hi @UpstateBaby I'm sorry to hear your daughter is struggling with it-- these issues suck! Was she diagnosed with Urticaria Pigmentosa/cutaneous mastocytosis or something else?

    I'm not sure what info I can give that's new. My systemic mastocytosis biopsy came back clean(yay) but they still don't know what the heck is going on with me. Since December 2015, I've been dealing with extreme angioedema, anaphylaxis, chronic hives, GI issues, musculoskeletal pain, nerve pain and severe migraines. My tryptase levels are high (while not in the midst of a reaction), as well as my natural levels of histamine. All my allergy tests came back negative although I regularly react to food that I tested negative for (walnuts, nutmeg, cinnamon and occasionally peanuts). I take double doses of antihistamines and was on a mast cell stabilizer before becoming pregnant, which seemed to help with a lot of my symptoms.

    I can point you in the direction of an excellent blog www.mastattack.org.  The woman  who runs it, Lisa, is an excellent resource! Also, if you haven't come across it yet, The Mastocytosis Society also has some great information.

    PM me if you have any specific questions. Not sure how helpful I'll be but I'm happy to try :)
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