So I'm still battling for a diagnosis probably falling somewhere within indolent systemic, MCAD with adrenal insufficiency and POTS.  I am NOT planning on getting pregnant right now while I'm on steroids etc, but assuming my masto symptoms are lifelong I'm interested to know if any of you have had successful pregnancies and what challenges you encountered?

I too was undiagnosed and unmedicated at the time of my pregnancy.  I actually got pregnant around the same time I first started showing symptoms.  I only had two shock episodes before I found out I was pregnant.  I don't think I can express enough how stressful of a time that was for me and my doctors.  Trying to figure out what the heck was going on with me while being pregnant at the same time.  They way my illness works is I feel fine all the time then without any warning I go into anaphylatic shock (diarrhea, vomiting, flushing, tachycardia, hypotension, hives and tongue swelling).  Since both started around the same time I cant tell you if my symptoms worsened or lessened while being pregnant.  I can say that unlike Deb I still did go into shock the entire time I was pregnant, (my mast cells did NOT behave at all).  There are a couple  symptoms I had when I was pregnant that I don't get now.  I would get extremely sharp pains in my stomach which would make it difficult to breath during and after a shock episode.  The sharp pains would stick around for a day or so after a shock.  My stomach would also be very sore for a couple days after probably because of all the vomiting.  I also had a lot of itching and hives while I was pregnant (I don't get to much of that now).  
But, with all that being said, it did not effect my pregnancy at all.    I was blessed with a 9 pound healthy baby boy that is now 19 months old and ornerier than ever!    Thankfully, right after I had my son I found this wonderful forum (well ....the old lefora forum) and started taking proper medication.   Unfortunately, I am still having attacks but, they are not as often and not as life threatening as before.

I think the only concern I would have with pregnancy would be all the medication we have to take.  I don't know if it is safe to take while pregnant or not?

Hope this helps,
Tracey

Thanks for your replies.


Yes I am on so many medications right now and still not reacting, so still on the road to finding what keeps things at a manageable level. hopefully my adrenal glands will wake up eventually and I can get off steroids and find a medication combo that still keeps me stable.  From my search most of the antihistamines/mast cell stabilizers are not recommended during pregnancy as they have not been studied. So I'll see how I do over the next year and if I'm still on a lot of medication I guess discuss the issue of pregnancy with an allergist and obstetrician.

I shouldn't be thinking about it so much now, but it's just one of the things I've always hoped I'd be able to do and one of the things (other than worrying about dying!) that makes me sad on a regular basis.

Thanks for your stories.

Dr. Escribano recently published an article on masto and pregnancy.  If you write to him and ask him for a copy of this article I'm sure he'll be glad to give you a copy for your doctors!

Lisa

From what little I´ve read on this, and there isn´t loads, pregnancy, when the patient has masto, does not become worse due to the pregnancy.   There can be some issues during the pregnancy itself, and with birth, be it c-section or natural childbirth, these are events which do require pre-medication for it can trigger reactions, however, I don´t believe that it causes any progression of the disease, at least not in SM.   What it does to the autoimmune form of MCAS is anyone´s guess.  Until the researchers decide the autoimmune form of MCAS worth their study, these patients and their doctors remain in the dark.  

Now for those patients who don´t know that they have masto, pregnancy has been recognized as a physically "traumatic" enough event to bring it out of hiding, just as surgery or contrast use.   It´s not emotional trauma I´m talking about but the physical trauma that these events cause to the system - the medications or stress to the system.   But this is something that´s already known about masto be it SM or the MCAS forms.


I know that some women have said that they are concerned about going through a 2nd pregnancy following their masto coming to the forefront, but although I did not have any obvious reactions, now looking back to my last pregnancy, I can indeed see that the masto was there, even though this awas 10 years prior to the even which brought it out of hiding.   I went through episodes of hypotension and almost went into anaphylaxis due to the heat while pregnant.  Yet I went through the c-section without any issues and the disease remained quiet for another 10 years.  

Yet, regardless of this, even if I were living with this stage of my disease during my pregnancies, I have no doubts that I would not change a single thing!!!   Any disease is going to rob us of what we consider our normal lives independent of what disease it is.  They ALL encroach upon us one way or another - it´s not normal to be chronically ill!   Yet unless it is such a disease as to endanger my life, why should I allow it to rob me of my motherhood?    Yes, masto complicates EVERYTHING we do and makes it harder to deal with just the simple living of life, but that still doesn´t mean that we stop living!!!    We only have to PLAN it all more carefully!!

So, there is no way that I would change having had my 3 tremendous children!!   They ENRICH my life and are a real blessing to have in spite of the fact that I can´t always keep up with them, and they are even a source for some of my triggering at times.    I still would not change a thing!!!

I hope this helps with some of the concerns!

Lisa

Hi all, I just found out that I am pregnant. I am having trouble finding information on mast cell activation and pregnancy. I see that Lisa mentioned an article. Can someone send me Dr. Escribanae's contact information or point me to where it is located? Thank you so muchl