What Is MCAS Like?

[Never Give Up]

What does MCAS feel like? What does treatment do for you? What doesn't it do for you? What is the down side of taking the medication?

 

[leela]

@Gingergrrl may have some insight in this regard

 

[Strawberry]

I am curious about this also. Another question I would like to add if I may?

When one of the "best" treatments is 20 - 30 mg of Zyrtec and 300 mg of Zantac daily, is that supposed to make a person feel better?

 

[Firefly_]

Dr Kaufman diagnosed me about I dunno, 5 or 6 weeks ago and started me on claritan, Allegra, and Zantac in the a.m. and a Zyrtec at bedtime (he said make sure none are the kind with decongestants in them I.e claritin-D etc) and it took a couple of weeks or more but I am feeling more energy, have been able to be upright most of the day and doing things around the house. I do still crash when I push it but overall the quality of my life has improved. Also I am cognitively better. Not back to normal, but noticeably better.

I do have some kind of swimmy droopy tired head about an hour or so after I take my meds, but then again I take ALOT of stuff in the morning so...anyways then it passes after a little while.

I only occasionally suffered from seasonal allergies, and I'm not severe like gingergrrl and others, have no trouble with foods and don't get rashes very often so this diagnosis was a surprise to me, but there it is.

Hope that helps.

 

[Strawberry]

Wow @Firefly_ I am glad to hear the antihistamines are working so well for you! But now I am stumped again. I still have days that I blow my nose all day long, and I have rash every day, sore throat every day, and today even a headache. The Zyrtec and Zantac haven't touched my allergies.

What (if I may ask) was it that that got him to diagnose MCAS? And how long have you been seeing him? I have only seen him once, and I have no idea how to get any diagnosis from him yet.

Again, glad you are feeling better!

 

[Gingergrrl]

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.

 

[Firefly_]

Wow @Firefly_ I am glad to hear the antihistamines are working so well for you! But now I am stumped again. I still have days that I blow my nose all day long, and I have rash every day, sore throat every day, and today even a headache. The Zyrtec and Zantac haven't touched my allergies.

What (if I may ask) was it that that got him to diagnose MCAS? And how long have you been seeing him? I have only seen him once, and I have no idea how to get any diagnosis from him yet.

Again, glad you are feeling better!

Heya @Strawberry, I first saw him in August of 2015 and ran buttloads of tests, went back again in sept (and let me tell you, those were nightmarish trips...I was 90% bed bound at the time and I live in Oklahoma!) ran more tests, got some diagnosis and a bunch of meds, in December he ordered up more tests, some quite obscure, my PCP had no idea about them lol. One of the tests was a Chromogranin A test and it came back quite high so that was the clincher I think, had some other abnormalities too that may have played into it, I'm not entirely sure as I didn't have my memory booted up correctly lol. I do know that one of the puzzles has been a very high CRP for an extended period of time and high ferritin levels, but I have no idea if those are even pertinent to MCAS.

The way I have handled all of this r.e. follow ups with him is just shoot him an email and say hey doc, what now? He's quite busy and I think you'll fall through the cracks if you don't remind them that you exist and he's very good about answering his emails quickly. He has the clinic email me the lab requisitions then we have a phone appt. when the results are in. Or I suppose you could just call the clinic directly and ask for a follow up appt. I've had two phone appts since sept and the last one took about 5 weeks to get in once I made the appt. also they run around $425.00 so gird your loins. worth every penny and then some for me.

Sorry you are feeling so miserable right now! Sucks to feel so gross every damn day.

 

[justy]

Its a difficult question to answer as every person is a little different as mast cells can affect any part of the body. I have a dx of MCAS, which was obvious because a dose of doxycycline kicked off 24 hr a day body wide itching with no rash 19 months ago now. But my background was one of MCS for many years. I had also had a lot of breathing problems that weren't fixed by my asthma meds and had everyone scratching their heads.

I had always been sensitive to perfumes, chemicals etc, but after the doxy I was now reacting with throat tightening and increased itching and fatigue with foods, newspaper and magazine print and food being cooked. I couldn ttolerate and med without severe increased itching, including just a paracetomol for pain, or herbs or most supplements. My sense of smell became VERY acute and anything I could smell I was sure to be reacting to with generally worsened health.

My breathing problems put me in bed for a good 3 -4 months as I could do nothing but lay or sit and try and breathe it was hell, yet no one thought of MCAS.

Eventually I tracked the dx down myself and saw a private specialist here in the UK 9there are only 2 or 3 in the UK who can dx this)

My Tryptase is normal, had no other tests, dx was clinical.

Was prescribed H1 up to 4 times a day (actually cant tolerate any more than twice a day). This controlled some of the itching, but my reflux (another symptoms) was out of control again - I didn't know this was also mast cells, but was given an H2, ranitidine twice a day. Now my reflux and some itching were controlled, but the itching would break through severely for weeks at a time. So we played around with different antihistamines. Some would work but often I have terrible and rare side effects to medication. Fexofenadine gave me severe suicidal depression - but hey I wasn't itching - great! Ceteirizine worked, then stopped working, double dose put me to sleep.

Loratidine mainly works I take two a day, but if I take three I get heart palpitations so I may actually be reacting to the meds that help us and here in the UK there are no compounding meds and my GP tells me the nHS wouldn't pay for this anyway.

I have also had a seizure as a result of trying a new drug and I now know this was an anaphylactic reaction.

A couple of months ago my GP reluctantly agreed to add in Ketotifen - but it is very sedating so I can only take a small amount at night. At first it was like a miracle drug. Itching stopped and I had more energy and a lot less fatigue. When I tried to up the dose the itching got worse, so again ccould be reacting to fillers in the meds. I am now on half a tab once a day - cant take more as it doesn't help.

I had about 4 great weeks where I thought we had found a big answer to my ill health. Was up cooking, cleaning, going out more (still with wheelchair, but at times pushing ti and walking a little). Then I crashed very badly and now am right back to square one with being bedbound for most fo the day and entirely housebound again.

 

[Valentijn]

I had about 4 great weeks where I thought we had found a big answer to my ill health. Was up cooking, cleaning, going out more (still with wheelchair, but at times pushing ti and walking a little). Then I crashed very badly and now am right back to square one with being bedbound for most fo the day and entirely housebound again.

I think this happens when we treat one debilitating symptom, and become a bit less debilitated as a result. Due to that extra debilitation, we were functioning below our PEM limits, and able/forced to store up a little extra energy. Then the excess debilitation is lifted, and we can function well enough to use up that energy. And when it's gone ... crash time!

I had a similar effect with a supplement blend (mostly due to NAC), and when starting on Strattera which helped a lot with OI. In each case a problem was greatly reduced, and I was able to be more active. Then I used up my reserves and crashed. I've built up similar reserves a few times after weeks of being bedbound due to OI, but run through them after several days. Fortunately by then I knew enough to not jump into "I must be healthier" mode

 

[Sidereal]

What's MCAS like? It's the one aspect of my illness I feel makes me seem especially crazy to regular people. Reacting to foods, meds, fragrances etc. is extremely traumatising. The trauma is reinforced every time you put something in your mouth and you sit there waiting for a reaction. So of course you start to avoid eating and taking meds/supplements which then makes you seem even more crazy and anxious.

It's also life-altering in ways that other illnesses aren't. People with most regular illnesses can still go to the hospital and get help or eat with their family etc. With MCAS you can't go to the hospital because you'd be killed by their drugs. Can't go to the dentist due to -caine meds and epinephrine. Can't travel; what on earth would you eat in an airport? Can't eat in restaurant. Can't eat foods at family gatherings. Etc.

I know all this sounds totally preposterous to people who haven't experienced it first hand and most doctors believe it's psychiatric. I'm not sure I would have FULLY believed it myself had it not happened to me a few years ago (although in hindsight I had subclinical manifestations of MCAS since adolescence). All I know is that to me and thousands of others whose stories I've read / met online it's very real and it responds to biological interventions like antihistamines and dietary modification.

 

[justy]

@Sidereal , this is a great post and matches my own experience exactly. I can no longer go and stay at other peoples houses due to not being able to control the environment.

I was invited to a friends 50th birthday in another part of Britain. They know how sick I am so they offered me a room with a bed all to myself to sleep in. But how can I explain that I can only come if I bring all my own bedding (and they will have to still make the bed for me) and then ask them to wash all their clothes and their bedding in the other rooms in unperfumed washing powder for like two months before I come, and then ask ALL the guests not to wear perfume, scented lotions, scented shampoo, fabric conditioner or perfumed washing powder on their clothes.

Obviously I cant do that so now I can no longer go even if I felt ME well enough!

 

[Sidereal]

I can no longer go and stay at other peoples houses due to not being able to control the environment.

Perfect description, @justy. I'm sure others looking in on my life think what I have is agoraphobia but it's exactly as you have described, the need to be able to control the environment. You can only survive in a controlled environment which is your own home. Out there you risk anaphylaxis, POTS collapse etc.

I was invited to a friends 50th birthday in another part of Britain. They know how sick I am so they offered me a room with a bed all to myself to sleep in. But how can I explain that I can only come if I bring all my own bedding (and they will have to still make the bed for me) and then ask them to wash all their clothes and their bedding in the other rooms in unperfumed washing powder for like two months before I come, and then ask ALL the guests not to wear perfume, scented lotions, scented shampoo, fabric conditioner or perfumed washing powder on their clothes.

This is so familiar. Anyway, don't do what I did which is to "challenge myself". Late last year I thought to myself, fuck it, my illness is what it is, I should try and enjoy what little life I have left, I'm gonna start going out more. Anyway, one evening I ate in a restaurant (that I ate from six months prior with no reaction) and my throat almost closed up. Then there was the really nasty detergent smell in the hotel room I was staying in so I had to sleep with the window open all night (November in Ireland is COLD). This little trip caused the most horrific crash ever and I was too sick to actually go to the hospital (even though any sane person in that situation would have been hospitalised) because who would believe you there. It's grotesque. I still to this day, four months later, haven't recovered to my prior level of illness which was horrible to begin with.

 

[justy]

So sorry to hear this. Who were you diagnosed by in Ireland? what is the care for MCAD's like there? I live in Wales and it's awful here.

 

[Sidereal]

So sorry to hear this. Who were you diagnosed by in Ireland? what is the care for MCAD's like there? I live in Wales and it's awful here.

I have no idea what the care is like here, I presume non-existent. It's been years since I've had any sort of contact with the healthcare system. Last time I looked into this (several years ago), there was no one here who knew anything about this and people travelled to the UK to get a diagnosis. Perhaps the situation has changed now, I don't know. I'm too ill to travel abroad. The last time I flew was in 2014 and I had to use a wheelchair, it was a nightmare. I think getting an official diagnosis is pretty pointless at this point given that you can easily get antihistamines and ketotifen online.

 

[Strawberry]

I do know that one of the puzzles has been a very high CRP for an extended period of time and high ferritin levels, but I have no idea if those are even pertinent to MCAS.

Firefly, I haven't read through the rest of the posts, but I wanted to respond to this. Yesterday I found a forum talking of mast cell activation, and of course I can't find it today to reference. LOL. But someone mentioned that high ferritin (which I also have) is related to low copper and is common in MCAS. It might be worth both of us looking into.

 

[Strawberry]

Was prescribed H1 up to 4 times a day (actually cant tolerate any more than twice a day). This controlled some of the itching, but my reflux (another symptoms) was out of control again - I didn't know this was also mast cells, but was given an H2, ranitidine twice a day. Now my reflux and some itching were controlled, but the itching would break through severely for weeks at a time. So we played around with different antihistamines. Some would work but often I have terrible and rare side effects to medication. Fexofenadine gave me severe suicidal depression - but hey I wasn't itching - great! Ceteirizine worked, then stopped working, double dose put me to sleep.

So it IS normal (ish) to not respond to antihistamines? Dr K had just said doubling my cetirizine from one to two daily and adding two ranitidine would prove if I had MCAS or not. It hasn't improved me at all. But neither have the 3 grams of valtrex per day. I emailed him last night, so hopefully I can get some more MCAS tests ran. My tryptase was 2 in December, so low. But I was also feeling pretty well at that time.

FWIW, Cetirizine is the first med I was able to tolerate, I have been on it for at least 12 years. Meds always give me heart palpitations. I was put on amlodipine a little over a year ago, and my palpitations have stopped.

 

[Firefly_]

Firefly, I haven't read through the rest of the posts, but I wanted to respond to this. Yesterday I found a forum talking of mast cell activation, and of course I can't find it today to reference. LOL. But someone mentioned that high ferritin (which I also have) is related to low copper and is common in MCAS. It might be worth both of us looking into.

Thanks, that's good to know! I'll do a little more research.

 

[justy]

So it IS normal (ish) to not respond to antihistamines? Dr K had just said doubling my cetirizine from one to two daily and adding two ranitidine would prove if I had MCAS or not. It hasn't improved me at all. But neither have the 3 grams of valtrex per day. I emailed him last night, so hopefully I can get some more MCAS tests ran. My tryptase was 2 in December, so low. But I was also feeling pretty well at that time.

FWIW, Cetirizine is the first med I was able to tolerate, I have been on it for at least 12 years. Meds always give me heart palpitations. I was put on amlodipine a little over a year ago, and my palpitations have stopped.

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)

 

[Gingergrrl]

What does MCAS feel like? What does treatment do for you? What doesn't it do for you? What is the down side of taking the medication?

Sorry for my slow reply to this and will try to answer your questions.

1) What does MCAS feel like?
At it's worst, I was having stage two anaphylaxis to anything I ingested but water which led to hospitalization. It was very scary and I would get a histamine surge with attempting to eat which included tachy into the 160's, throat getting narrow, itchy, massive thick glue-like phlegm, coughing, runny nose, head and ears stuffed up, facial flushing, and at very worst episodes my teeth would chatter and entire body shake and begin to get confused/disoriented.

My reactions now are much more minor and infrequent, and with my pre-food meds, I can eat a large variety of low histamine foods with no issues. Most severe issues now are controlled by my rescue med, Atarax. I do have to take the pre-food meds 30-60 minutes before eating which is limiting, but of course is worth it.

2) What does treatment do for you?
It allows me to safely eat food and to have a rescue med in pill form (Atarax) to completely avoid using an EpiPen.

3) What doesn't it do?
It keeps me on a low histamine diet, I cannot eat in a restaurant, and I cannot eat without the pre-food meds. It doesn't stop all flare-ups but the difference with last summer is a dramatic improvement. It also makes all treatments more risky. Most of my meds must be compounded to avoid food dyes and I cannot go to dentist, color my hair, or do medical procedures with a contrast dye, etc. If I truly required a surgery, I suspect the MCAS would kill me.

4) What is the down side of taking the medication?
Honestly there is no downside with my current med regime but when I was trying the wrong meds, they did not work and were not effective. Benadryl gave me a toxicity reaction and had to be stopped completely but Atarax has been a miracle drug. My entire regime works very well now with no side effects and I can eat food 2x/day on most days and when I cannot, I drink dextrose & salt water.

Hope this helps!

 

[Never Give Up]

Thank you so much for all of your answers. I think I have fairly clear understanding of it now. I'll mark that one off the list unless it gets much, much worse.