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What Is MCAS Like?

justy

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5,524
Location
U.K
Yesterday I had another response to a medication that I have been tolerating well for the past 7 months. I think I have an atypical form of anaphylaxis, which is not uncommon in people with MCAD.

Immediately after the injection I started to feel really spaced out and lightheaded, then VERY cold and shivery, couldn't warm up with blankets and a fire going and jumpers on. I also felt like something awful was going to happen (impending doom feeling), then I got the myoclonic jerks and head shaking and a horrible low BP type feeling. I felt out of it and as if everything was unreal. I also felt strongly that if I didn't concentrate on being 'normal' that I would cease to exist or everything would just fall away (not a fainting feeling).

MCAD friends on FB tell me this could be atypical ana. This went on for about and hour strongly, then another hour less strongly, then felt more or less my normal, just very tired for the rest of the day.
 

justy

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5,524
Location
U.K
@justy, was your reaction to the IVIG or something else?
yes to the sub Q low dose immunoglobulin, which I am normally ok with. This one bottle though has made me feel a little 'off' every time I use it, I may move onto a new bottle. I had to tell my husband - this IS a reaction, it just doesn't look how you would expect, if I pass out then epi me.

Others have said you could epi at this point, but I felt so ill I didn't want to spend all day in our rubbish local hospital trying to explain something they will not understand, also a little scared of the epi pen...I see you use Atarax as a rescue med - is that VERY sedating? I react badly to sedating meds, but might ask my GP if we can try it. But then of course I have all the stress of thinking about and working up to try the drug!
 

Gingergrrl

Senior Member
Messages
16,171
yes to the sub Q low dose immunoglobulin, which I am normally ok with. This one bottle though has made me feel a little 'off' every time I use it, I may move onto a new bottle. I had to tell my husband - this IS a reaction, it just doesn't look how you would expect, if I pass out then epi me.

Oh, Justy, I am so sorry to hear of this happening to you! Do you have any idea why it happened now after you've been tolerating the IVIG for some time? I know this is impossible to really answer with MCAS but was any other factor different? I am wondering if something really was wrong with that one bottle since it has made you feel "off" every time you've used it. Could it be expired or have overheated in the shipping process? I had a problem with one batch of glutathione and did not tolerate it and ended up exchanging it for a new one. Every other batch has been great except for that one.

Am glad you told your husband that this is a reaction even though it looks different. I forgot, have you ever actually had to use the EpiPen? I have not ever had to use it, thank you God, even though I carry it in my purse at all times.

Others have said you could epi at this point, but I felt so ill I didn't want to spend all day in our rubbish local hospital trying to explain something they will not understand, also a little scared of the epi pen...I see you use Atarax as a rescue med - is that VERY sedating? I react badly to sedating meds, but might ask my GP if we can try it. But then of course I have all the stress of thinking about and working up to try the drug!

I read the same Masto FB groups that I think you do even though I am not a member and do not post (I read through my husband's page) and it seems like they use the EpiPen very frequently and in situations that I would personally wait and not use it. But I also have Atarax that works immediately as an oral rescue med and many people do not have that option b/c they are more severe than me (even though I was very severe last summer.)

Atarax is mild to moderately sedating for me but the sedation is worth it b/c it stops the allergic reaction dead in it's tracks before it reaches ANA. Am certain that without Atarax, I would have progressed to needing the EpiPen on many occasions. Most people take Benadryl but I build up a toxicity to it very quickly which I do not with Atarax. I get the Atarax from my MCAS doc at the same compounding pharm who makes my Ketotefin and it is pure with no fillers and just a veggie capsule.

If there is any way on earth that you can get Ketotefin or Atarax compounded, it would be well worth the extra cost IMO. I am past the point of even attempting meds with dyes or weird fillers.

You asked about sedating meds, and for whatever reason, I do not have any problems with sedating meds and never have. I am the opposite and cannot tolerate meds that are stimulating or agitating. Even a micro, infant dose of agitating meds can give me tachycardia, insomnia, agitation and even akathesia. Whereas I have no issue with the sedators! Who knows why.

Please keep me posted on this if you can and I may be doing IVIG or plasmapheresis in the near future (next few months, not immediate.)
 

Strawberry

Senior Member
Messages
2,109
Location
Seattle, WA USA
I didn't really feel any 'healing' until I started on H1, H2 AND ketotifen (mast cell stabiliser)

Not all antihistamines work for all people. I cant remember what your symptoms are, can you remind me why you feel you have MCAS? my Tryptase is also low - around 4, that doesn't rule out MCAS. You could do an N Methylhistamine 24 hr urine test (but it has to be kept chilled at all times and handled correctly by the lab)
Dr Kaufman is the one that suspects it. But I think I fit the bill. Just not as severe as you and gingergirl if I have it.

I'm allergic to perfume, diesel exhaust, chemicals, hot tubs. They all give me migraines. I am allergic to everything airborne: pollen, animals, dust mites, and have year round allergies. I used to get shots for allergies. I have reacted to most prescriptions, once with hives, the rest with severe heart palpitations. I'm allergic to the sun (polymorphous light eruption) and get severe treatment resistant hives. I became allergic to my pet rats overnight with very severe reactions that should have put me in the hospital had anyone paid attention (wheezing, unable to breathe, near passing out). I am allergic to wheat, and had severe GERD until I started treating my stomach. I have rash and sore throat constantly. My leg muscles turn to jello quickly standing (probably not MCAS related).

Some other things that I have heard are linked to MCAS: geographic tongue and tinnitus.

I could go on much longer, but I don't have time. This is the most glaring stuff. No I don't seem to have issues with food (minus wheat) but it could be what causes my rash and sore throat. Maybe it isn't MCAS, it could be just MCS. But its pretty obvious I have histamine issues.
 

Gingergrrl

Senior Member
Messages
16,171
@Strawberry Was curious if you had your histamine or prostaglandin levels checked (sorry if I missed this) or if you have tried a mast cell stabilizer like Ketotefin?

I was initially tested by Dr. K in Dec 2014 and my blood histamine was 3x the normal limit and he was shocked b/c he said it is very hard to capture. I had no symptoms at that time (although in retrospect, I've had subclinical symptoms of MCAS all my life.) Then in March 2015, I had ANA to a candy containing a yellow food dye called Tartrazine. This seemed like a fluke but then it happened with a medication containing a red food dye. From there it progressed to certain foods and then to all foods but water.

I was unable to eat without stage 2 ANA and got down to 98 lbs and finally hospitalized. Long story short, I started seeing an MCAS specialist in July 2015 and he completely changed my meds b/c Zantac and Gastrochrom were not helping me at all and I developed a toxicity to Benadryl.

My current meds are: Zyrtec, Ketotefin, plus three supplements NeuroProtek, Daosin and Quercetin. And I have Atarax as my rescue med. He is phenomenal and for me, this could not be managed without an MCAS specialist. He views it as secondary (unlike mastocytosis which is primary and a form of cancer) and believes it may not be permanent for me. Am hoping as I start to treat some other issues, that my entire immune system will not be in hyper-drive and will tamp down these crazy allergic reactions even further.

Hope this helps.
 

Strawberry

Senior Member
Messages
2,109
Location
Seattle, WA USA
@Strawberry Was curious if you had your histamine or prostaglandin levels checked (sorry if I missed this) or if you have tried a mast cell stabilizer like Ketotefin?

I'm not aware of either of those tests performed yet, and I haven't tried Ketotefin. I am curious though how it helps you?

(although in retrospect, I've had subclinical symptoms of MCAS all my life.)

I am curious what these are if I may ask?

Best of luck to you with these new treatments, I am so glad something is working!
 

Gingergrrl

Senior Member
Messages
16,171
I'm not aware of either of those tests performed yet, and I haven't tried Ketotefin. I am curious though how it helps you?

I would do the tests (histamine & prostaglandins) and they are worth it. Ketotefin works as a mast cell stabilizer but many US docs who are not MCAS specialists do not know about it b/c you can only get it from a compounding pharmacy and it is not commercially available through regular pharms. I take it as one of my maintenance meds 2x/day 30-60 min prior to eating food. It was the first thing that turned my situation around after being in the hospital and allowed me to eliminate 3-4 other pre-food meds including Benadryl, Zantac, Gastrochrom, etc.

I am curious what these are if I may ask?

If you look at the Canadian Masto Society website they list 40-50 symptoms of MCAS and I had about 30+ of them at a subclinical level prior to full-blown MCAS and ANA. Literally too many to even list but I never tolerated many high histamine foods (lifelong), never tolerated aspirin or NSAIDS, had easy/spontaneous bruising, severe period cramps, etc, etc.

Best of luck to you with these new treatments, I am so glad something is working!

In this case I have been using these treatments since July 2015 and they are not new but continue to work and allow me to eat more foods and have never had to use the EpiPen.
 

Strawberry

Senior Member
Messages
2,109
Location
Seattle, WA USA
@Gingergrrl Sorry it has taken me so long to respond!

Is the Ketotefin only for stomach issues? Meaning food intolerances I guess... Since food seems to be the only thing that doesn't knowingly bother me, would it help with my skin/rash issues or chemical and scent intolerance? I am so glad it is helping you, you needed something that worked.

I have looked at that Canadian site, and I have at least 40 on the list that fit me to a t. Between you and I, we might just be able to write off almost the entire list as your issues are so completely different than my issues!

I read some blog post, and even someone talking about their early childhood sounded like they were telling "MY" story. I hate this waiting game.
 

Gingergrrl

Senior Member
Messages
16,171
@Gingergrrl Sorry it has taken me so long to respond!

No problem and just saw this post myself!

Is the Ketotefin only for stomach issues? Meaning food intolerances I guess... Since food seems to be the only thing that doesn't knowingly bother me, would it help with my skin/rash issues or chemical and scent intolerance? I am so glad it is helping you, you needed something that worked.

Absolutely not, Ketotefin is a mast cell stabilizer which helps with degranulation of the mast cells. I do not take it for stomach issues vs. to prevent all of the symptoms and reactions of ANA that can occur when I eat food. For me this includes everything from tachycardia to thick phlegm/throat clearing, throat narrowing and tightening, head/ears/nose stuffed up, flushing, angiodema and swelling, and worst reactions with full body shaking, teeth chattering, confusion and anaphylaxis.

Ketotefin is a daily maintenance med for me and I take 2 mg 2x/day with my pre-food meds at 30-60 min before I eat. It is not a rescue med for emergencies. I get it compounded as this is the only way to obtain it in the U.S. Hope this makes it more clear.

I have looked at that Canadian site, and I have at least 40 on the list that fit me to a t. Between you and I, we might just be able to write off almost the entire list as your issues are so completely different than my issues!

Yes, that list described me perfectly as well from all the food/allergic/ANA stuff to sub-clinical stuff I lived with all my life.

I read some blog post, and even someone talking about their early childhood sounded like they were telling "MY" story. I hate this waiting game.

Am confused what you mean re: waiting game? For me, I just do everything I can to control the reactions (pre-food meds, low histamine diet, seeing MCAS doc every 6-8 weeks, compounding or getting all meds dye free, carry EpiPen in my purse, wear Medic Alert bracelet, etc.) It will never be perfect but you just make the modifications that you can to survive.
 

Strawberry

Senior Member
Messages
2,109
Location
Seattle, WA USA
Thank you @Gingergrrl that does make more sense with the Ketotefin. I still am not sure I have MCAS, but I guess I will wait until the "trial period" is over and let Dr Kaufman decide. Which is what I was referring to as the waiting game. Part of it is my fault as I still don't have all the tests complete that he ordered in December, but that is due to unforeseen circumstances that have kept me from going to the Dr.
 
@Never Give Up , if the reason why you are marking this one off the list is because you have very mild to no skin reactions / lesions; no anaphylaxis or anaphylactoid reactions that nearly require the use of an Epipen or hospitalization; no foods intolerance or allergy; no environmental allergy or even MCS...

Well, this might be a mistake. MCAS can be very much systemic and can affect virtually every organ, so the clinical manifestations are very diverse.

Here's a list I've personally found very useful. Please note that your clinical profile does not need to fit all those signs and symptoms for you to have it.

I have tons of real food and environmental allergies that raise my IgE antibody levels, true. But, from what I've read and/or have been told, those are often common with MCAS, however they aren't what MCAS is!

People with MCAS get triggered by things that aren't allergens. Physical activity, changes in temperature, emotions, sunlight, etc.

Some will also get triggered by foods that they aren't allergic to (especially foods that tend to make the body release more histamine), but that is not all people with MCAS that will react this way, either.

The manifestations of mast cell degranulation can simply be brain fog, nausea, fatigue, and general malaise...

It doesn't have to be itching, skin redness, difficulty breathing, throat swelling, and so forth!

This is one of the reasons why it is so hard to diagnose, because the patient's manifestations caused by excessive histamine (and other mast cell mediators) release could have nothing to do with what you would typically expect from someone having an "allergic reaction".

Most of the time, I just feel as though I was drunk or poisoned, that's pretty much all of it! No swelling, itching, redness, or anything like that.

I've never had to go to the hospital following a reaction, either.

And the only time I've ever had to use anti-histamines because I was having trouble swallowing and breathing (took a high dose of Reactine (Cetirizine) in an effort to avoid using my Epipen, and thankfully it worked!), was when I accidentally ate a citrus pie that had eggs in them that hadn't been perfectly cooked!

So that was an actual allergic reaction to eggs, not my MCAS acting up!

And my skin lesions are so light / mild that most often they go unnoticed.

I have something that looks like livedo reticularis on my legs, but it's only present from time to time.

I have red plaques on my chest when I take a bath, but about 1 hour after that bath they are gone.

I have some redness on my cheeks (that has improved since I get Xolair shots) that a dermatologist identified as "rosacea", but I don't "flush" (i.e. get red cheeks) when my symptoms get triggered.

Although I do feel as if I was running a fever and the skin of my face feels really hot to the touch when I feel especially tired. No change in color or external appearance, though.

I have dermographism, but I wasn't even aware of it until my immunologist scratched me to see how I react! Lol!

I get a bit of eczema and urticaria on my hands (and at some point in my armpits), but that's only from time to time.

I used to have some striae with a lot of itchiness on my legs, but that didn't happened to me in 6 years!

So really, taken alone, all those skins reactions tend to be stuff that happen to healthy people, too. When you combine them, yeah, it's a bit weird all of this has happened to the same person in the course of 7 years. But otherwise, it's not that spectacular of especially significant.

MCAS is a little like ME/CFS in regards to the fact that it has many, many faces... Don't rule it out too quickly if you do recognize yourself in many of the signs and symptoms found on the list I showed you, and if your reactions that mimic allergies are very light or mild.
 

Vasha

Senior Member
Messages
119
Thank you @Gingergrrl that does make more sense with the Ketotefin. I still am not sure I have MCAS, but I guess I will wait until the "trial period" is over and let Dr Kaufman decide. Which is what I was referring to as the waiting game. Part of it is my fault as I still don't have all the tests complete that he ordered in December, but that is due to unforeseen circumstances that have kept me from going to the Dr.

Hi @Strawberry - just wondering how this is going for you?

MCAS meds are mix/match/trial/error. Hoping this has been something of an answer for you!

-Vasha
 

Strawberry

Senior Member
Messages
2,109
Location
Seattle, WA USA
Hi @Strawberry - just wondering how this is going for you?

MCAS meds are mix/match/trial/error. Hoping this has been something of an answer for you!

-Vasha
Hi @Vasha , thanks for asking! I am still plodding through it all. I just had my 2nd phone consult with Dr K today, and he is adding Neuroprotek as my Chromogranin A is very high. Also stopping the valtrex, and going to start on two different antibiotics as I got a positive for Bartonella Henselae...... grrr. It never ends, does it.
 

Vasha

Senior Member
Messages
119
Hi @Vasha , thanks for asking! I am still plodding through it all. I just had my 2nd phone consult with Dr K today, and he is adding Neuroprotek as my Chromogranin A is very high. Also stopping the valtrex, and going to start on two different antibiotics as I got a positive for Bartonella Henselae...... grrr. It never ends, does it.

Hi @Strawberry -

Ach, I'm sorry your Chromogranin A is high--according to Dr. Afrin's book, that's a definite MCAS marker -- but the good news is that MCAS is actionable. Hopefully you and Dr. K will hit on a combo that will really help! My QOL really improved with this treatment.

Wishing you all the best!

Vasha
 

ebethc

Senior Member
Messages
1,901
I just realized I was tagged into this post and I am currently six hrs away from home having medical tests.

I know a lot about MCAS from my near death experiences last summer and will reply in detail once I am home on Sat or more likely on Sun.

I will say the med that turned it around for me was Ketotefin and the rescue med that saved me from ever having to use the EpiPen is Atarax.

Will answer the rest once I am home.

did ketotifen cause weight gain?
 

Gingergrrl

Senior Member
Messages
16,171
did ketotifen cause weight gain?

Have gained weight since I was very ill with MCAS last summer but not sure if from Ketotefin, Cortef, or other meds. Probably all of them combined. In my case nothing I can do about it as I need the Ketotefin in order to eat food!