Archived from Original Forum  -  starflower author




0   permalink Post Admin: delete | spam Hi Nichole,
This is actually a very good question!  Here are some early warning signs of an attack for me...

-   A feeling of dizziness or floating when I move my head
-   Having a dream that I'm nauseated and/or dizzy (middle-of-the-night attack)
-   An unsettled, "raw" feeling in my stomach or lower abdomen
-   A sudden sensation that my hands are really dry (this is a BIG red flag for me)
-   Feeling overheated, regardless of the actual temperatureFeeling suddenly tearful and overwhelmed for no good reason
-   The great thing about flushing is that other people can warn you!  
-   All of my early warning signs are internal... I only get hives when I'm out in the sun too long or having a really severe attack.


The sooner you treat an attack the better.  That doesn't necessarily mean that you have to whip out your EpiPen.  50mg of liquid Benadryl (the stuff they sell in the children's section) will often settle me down.  Other people have other tricks, like taking an extra dose of their regular antihistamines.

Heather  

Archived from Original Forum   -  riverwn2 author



Nicole do you take other antihistamines and mast cell blockers regularly? When I first became aware of the masto I took benadryl every day, then I figured out what I needed for me every day and my list changed.. certain meds to maintain me, certain ones to take if I didnt feel well and then the "rescue" meds if I had a full blown episode. Its kinda a hit and miss process to see what you react the best to medication-wise.

You need to figure out what those meds are for you. You need to carry some with you everywhere. You also need the epi-pen and a printed emergency plan in your purse to hand to someone if you have an episode ot end up in the hospital for any reason. Remember any stress or trauma will activate those mast cells so expect trouble with them for other problems and you can relieve it quickly. Good luck hon

Ramona

Archived from Original Forum   -  riverwn2  author



Hi Nichole

Taking mast cell blockers would be a good idea... Most of us do.. thats something personalized to each of us, like which antihistamines and how much. Im a "shocker" so taking a mast cell blocker is important to me. It might not be that vital for you if you dont have symptoms to need it.

Here is a few;
Ketotifen--usually in starting dose of 1mg and goes up. Its not available in the US right now so you have to order it out of Canada. I take Zaditor eye drops which have a very small amount of Ketotifen in them and can be bought cheaply over-the-counter at Walmart.

Cromulyn syrup which most people take by mouth. It takes a prescription and is expensive. Im a cash patient so I take Nasalcrom which has it in the base also and is OTC cheap at walmart.

Quercetin-a natural bioflavanoid usually from grapefruit. I take this twice a day.

Luteolin-another natural bioflavanoid from olive oil, kinda expensive but Ive heard great things about it.
There are new ones in the market all the time. There is a new one for blocking Basophiles (I forgot the name but it is in the thread about reseach and Basophiles).

Again, you might not need any of these if you dont have symptoms you need to block. Im just taking my baby steps here learning so I hope this helps and someone else can jump in and give better info

Hugs to ya!
Ramona

Archived from Original Forum   -  kateswmo  author



Hello and Welcome Schatzi...

What you have described sounds like what I go through. I am both a "leaker" and a shocker. I usually have some degree of symptoms daily which is the Leaker part. Then I will have 2 or 3 times a month that it goes into overdrive and requires a trip to the ER for my emergency IV meds. This is the Shocker part. I am grateful as I used to be in the ER ever 2 or 3 days, whereas the titration of my meds  has helped quite a bit although I still remain vigilant with regards to staying away from most of my triggers. The fatigue, brain fog and muscle/joint pain are the most annoying for me.

Regards,
Kate

[color=#ff0000]Archived from Original Forum   -   starflower author[/color



Singulair is a leukotriene inhibitor, but yeah... good stuff.  I was skeptical that it would do anything for me since I don't have asthma and I was already taking antihistamines plus Gastrocrom, but it did!  In fact, my hematologist has raised my dose from 10mg to 30mg per day.

Good for you, Schatzi, that someone (you? your doctor?) figured out the mast cell disorder!!  I have an autoimmune version of MCAD that shares some features with lupus... positive ANA, non-erosive joint pain, complex deposition, etc...  Have you ever been tested for auto-antibodies to IgE and/or the high-affinity IgE receptors?  

Heather

[color=#ff0000]Archived from Original Forum   -   starflower author[/color



The antibodies I mentioned are not part of the standard ANA reflex.  In fact, as far as I know the only lab that does the high-affinity IgE receptor antibody test is National Jewish Hospital in Denver.  Here's the best article I've found about it:

http://www.nejm.org/doi/full/10.1056/NEJM199306033282204

Although my ANA has been as high as 1:320, I've never tested positive for antibodies associated with lupus, RA, or Sjogren's.  However... the mast cell disorder I have IS an autoimmune connective tissue disorder.  It's just not a common one (in fact, it seems to be quite rare).  Dr. Castells and my hematologist have both suggested Plaquenil as the next step... after antihistamines, a leukotriene inhibitor (Singulair), and a mast cell stabilizer (Gastrocrom).

Your disorders are connected... they're all manifestations of your hyperactive immune system.  It's actually not that unusual to have more than one autoimmune disorder.  I do.  Having one is a major risk factor for being diagnosed with another one!  Sad, but true.  I've been lurking in another group for people with lupus so I can learn more about it... particularly about treatments like monoclonal antibodies, which (aside from Xolair) are not commonly used in mast cell patients.

How old are you?  How long have your symptoms been going on?  Sometimes it just takes a while before autoimmune disorders show up "properly" in the tests.

Heather

ps - As long as you keep educating yourself and pushing for answers when you need to, "deep breath and relax" is an excellent strategy for making friends with your mast cells  

[color=#ff0000]Archived from Original Forum   -   lisathuler  author[/color



Hi Schatzi!   Welcome to the crowd!!   I think you find that not only are we able to be helpful, but you're in like company!   It seems to me that we're gathering here a group of us who are autoimmune!  Heather is one, I'm one, Ramona seems to be too, a few others are showing some markers and much to my surprise Mom:)  (Debbie)  has unwittingly revealed that she too is one!  She insists she's IA cause that's what Dr. Akin told her a while ago, but I wonder if he'd change his tune with the ANA results she's shown!    

Deb, you should retest your ANA.  It goes up and down, they're not considered constant, but the thing is that once you usually show an alteration it stays that way - but then I'm not up on autoimmune diseases themselves.  It wouldn't surprise me that you are Autoimmune Masto like others of us and that's just your only marker backing that theory.

You see, Schatzi, there's NO RESEARCH into autoimmune masto yet!  None of us really have answers not even the researchers yet cause this is totally uncharted waters we are swimming in, but they and us!  Some of us have been fortunate, like Heather, to find doctors who are saying "Smells like, looks like, sounds and acts like Masto" - Must be Masto!   I'm like Heather, an ANA of 1:320 but where are the other markers for rheumatoid arthritis, Lupus, and all of the others out there?  And besides, how could I possibly have those diseases when the ONLY symptoms I have fall into masto?!  

Big question - DO YOU HAVE FLUSHING?    Well, that may seem like a stupid question but it's not, I assure you.  The flush is a MAJOR GIVEAWAY!!!   There are ONLY TWO MAJOR DISEASES which cause flushing - Mastocytosis and Carcinoid Syndrome!    There are flushing syndromes like with wines, drugs, menopause or niacin consumption - halequin Syndrome, Frey's syndrome and even a chemical imbalance with the monamine oxidase dificiency.   If you have flushing, which you do, then I very honestly question the three diagnoses.  I think you've got your finger on it in that its not three but only one and for now the MCAD/S diagnosis is what I'll bet my money one.  

One of the things that has not been studied yet by researchers is the involvement of the mast cells, their mediators and their influence upon the nervous/neurological system.  That means that there's still an entire area yet undiscovered!  We've been talking about fibromyalgia here - Peter goes through terrible pain and Mike does too!  Since nobody's studied the nervous system and how mast cells interact with it, or the mediator release who is to say how it's involved?  Who really knows yet if polineuropathy isn't involved?!   Until someone begins to study the MCs involvement with the nervous system, there's no answer as to these things!   So, how can they say that these things ARE NOT involved?   The question remains open.  Now, they can say that based upon the majority of patients this may not fit into the classical patient constellation of symptoms.  And like we were talking about with the fibromyalgia subject, just because there are mast cells present and they show morphology, it doesn't mean that it's a true mast cell disorder in and of itself.  Intersticial Cystitis is an condition where there is an increase of mast cells within the bladder tissues and there are some cases of detrusor mastocytosis due to how invasive the mast cells have become, but excepting the Detrusor Masto, Intestitial Cystitis is NOT recognized to be part of mastocytosis even though a great many masto patients do have this disorder.  I do!  The reason why is because of the mast cells themselves - there is more than one type and depending upon its genetic make up this is what makes it mastocytosis or not.   So many of our answers depend totally upon research and until they can gain more understanding, certain questions and issues of ours unfortunatey must wait!  

So, Schatzi, I think you're going in the right direction there in that youré showing autoimmune masto and that you can cross lupus off of your list and your doctor should too!   Tell him to speak with Dr. Castells about your case.  You're not going to find an immunologist who is higher up than she, except for Dr. Lawrence Schwartz of Virginia Commonweath University in Richmond, who understands autoimmune masto as well as she!  If he reads to her his work on you I'm certain she will tell him, Autoimmune masto, especially with those markers of yours!

Keep pushing Girl!!!  You're getting there!!!
Lisa