Starting Mcad Treatment Today

[jkoconne]

Hi all,

Its been a few months since I've been on the forum. I've been having a lot of up's and down's. My neuro tested me for Mcad. I guess he's adding this test to all of his pots patients tests now. I was tested for Mastocytosis (spelling?) in 2011 and the test was neg. The Mcad test was also negative but very close to the high limits of each category. because I had been feeling okay the week prior to the test the doc thinks I may have it and we just didnt catch it in a flare up. I remember the doc that tested me in 2011 thought the same thing but didnt want to put me on medication.

Anyway, I want to improve so I decided to follow the neuros lead and start treatment for Mcad. Its a 'Coctial' of 3 medication. I'm starting the 3rd medication today. I have been taking allegra 1X daily and Pepcid AC 1X daily for the last week. Today I started Cromolyn (similar to gastrocrom I've been told). I will take it 4X daily- 30mins before 3 meals and then 1X before bed.

Im curious if anyone is currently taking a mast cell stablizer. If yes, do you have advice? what has your experience been?

Has anyone tried treatment and didn't find it helpful? If so, what was your experience? Also, did you take it for 2-3 weeks. I was told I wouldnt not know how helpful it would be for 2-3 weeks.

Thanks! Hope everyone is feeling good today

[futurehope]

Hi, It's 1:30 AM here, so I cannot stay on and write. I'm too tired. When I get a chance, I will share some of my experiences.

I am a POTS person with MCAS , interstitial cystitis and irritable bowel. I have been experimenting for about 1 1/2 years with different meds. One of my current experiments is cromolyn sodium. I'll be glad to share with you tomorrow. I'm expecting a snowstorm here, and I should have time.

[futurehope]

jkoconne,

Back at ya......

I am currently on zyrtec, 1/2 pill 12 hours apart.

zantac (75, just reduced from 150's) 12 hours apart

generic singulair 1X/day

cromolyn sodium - I could not do the starting dose my doctor suggested. I got a bad headache and crampy intestines and dizziness. I started at one eighth the dose for a while. Now I am at 1/4 the dose for a while. Still no benefit after one month of starting this, yet I have not given up. I am taking the med twelve hours apart before meals. I am getting the med from Clark's pharmacy in washington state in the powder form. I have to measure and put it in distilled heated water to dissolve it.

It is currently looking unuseful at this time. Time will tell. I will probably remain on the other meds.

BTW, be careful because you may react differently to different formulations of the same drug due to fillers and colorings.

Summary: This illness has been extremely challenging. I may look fine, but be reacting and feeling poorly quite frequently. It's been years since I've felt somewhat okay. I hope you have better luck. I see Dr. Afrin at MUSC,

[gertie]

jkoconne, how are you feeling so far with your treatment? I'm hoping it works for you.

I have seizures from antihistamines & cromolyn sodium caused vertigo so I don't know what to do.

Best of luck!

[Christy_D]

My son has MCAS and tried a couple of mast cell stablizers. They didn't help or hurt. He also tried Singulair, no help or hurt. Ativan, no help or hurt. In June we finally found the drug that has helped him significantly, Klonopin. His nausea is way way down. He currently takes

Zyrtec, 10 mg 2x day,

Zantac (just reduced dose) 75 mg 2x day,

Klonopin 5 mg 2x day,

Propranonal 2x day,

Doxepin 100 mg 1x day

Vitamin D 5000 IU daily

[futurehope]

Actually, to add to what Chirstd said, Klonopin was the only drug that made my POTS noticeably better immediately. I was afraid to continue because my response to a benzodiazepine is that the "calming effect" of it wears off, and I would then "need" the drug. I mean....either I would have to stay on it at a higher dose to prevent nervousness and insomnia, or I would have to "get off it entirely", either of which is not pleasant. But for two weeks, i can honestly say that that was the only drug I ever took that made a difference.

[Christy_D]

_{Dr Afrin explained that there are over 200 receptors and for us Klonopin was the key that fit the receptor that needed unlocking. We were lucky to find the key. As for 'needing' the drug or becoming addicted, the medicine has made such a profound effect that I couldn't imagine taking it away from him. He was pretty bedridden most of the day before finding this medication.}

[futurehope]

Christyd,

I believe you. Maybe someday I will experiment with this benzo again. It was the only drug that produced profound and noticeable results in me.

ETA: I forgot to say....one of the reasons I shy away from benzos is that one of their side effects is depression.

[jkoconne]

Hi all! Thank you for responding! I've had a busy week and my free time was spent sleeping/relaxing so I haven't been on.

So far the cromolyn has been okay. It's reduced my nausea and feeling of general sickness after eating. By Friday I was only feeling bad at 1 meal a day rather than all 3. The doc said it'll take 3 weeks to know it's full effect but so far so good! No bad side effects except more urgency than usual with bowel movements.

Right now I'm taking 10mg (liquid solution) mixed in 8oz of water 3x daily 30mins before meals and then 1x before bed. It's really hard making that work with my schedule and when I'm not feeling good

Thank you so much for your input and advice! It's always helpful to me! I wish you and christyd's son all the best and hope you feel better soon!

[~elizabeth~]

My experience was very negative. I was persuaded to see an immunologist for MCAS on the basis of my severe flushing. I was unconvinced that it was MCAS, as I'd previously had zero response to antihistamines, even in high doses, but as I had IgG and other raised immunological markers, the immunologist felt I fitted the profile. He then started me on Gastrocrom, starting on a very low dose. Within a couple of days, my face started swelling where my glasses touched, just as if a wasp had stung me there. My whole face then swelled up, and all the skin peeled off around my nose and eyes. Given that the various people on MCAS boards assured me to stick with it because there's always an increase in mast cell mediators for the first few days (or weeks), I stupidly carried on even though I was in agony. I managed to stick it for nearly 4 weeks when I was reacting to everything I tried to eat, my throat started to close up and I couldn't swallow. My GP prescribed prednisone, which made things worse. At this point I rang the immunologist, he told me to stop immediately. After that he changed his mind about my symptoms being MCAS, and refused to prescribe me ketotifen as he said I was likely to have a bad reaction to that as well.

I had a second opinion from the leading MCAS specialist in the UK, he said it definitely wasn't MCAS. He tried me on hydroxyzine (an antihistamine that people with true mast cell disorders all swear by). That made me extremely hyper, and caused all the skin to peel off my face again. I now know that anthistamines that block dopamine like hydroxyzine can seriously worsen hyperadrenergic symptoms (as do drugs like metoclopramide, which I've had very bad reactions to), I think ketotifen does this as well so I'm really glad I didn't try it.

We're now fairly sure that what I have is severe amine intolerance, probably related to having very high norepinephrine levels depleting mono and diamine oxidase levels, and triggering inflammatory mediators which are purely neurological, not mediated by mast cells. I think there is a good deal of confusion about what's actually going on with so-called MCAS in people with autonomic disorders. Frankly I think it's being greatly overdiagnosed. Personally I'd start with adjusting the diet to see if cutting out foods that are high in amines first to see if that makes any difference, and approach mast cell stabilisers with great caution as they can interact with the autonomic system in unpredictable ways in some cases. The second MCAS specialist said that if you have no beneficial response from a couple of over the counter anthistamines, it's unlikely to be MCAS and that was certainly true in my case. Since it's also become clear the oral/throat/swallowing problems I've been suffering in reaction to certain foods (nightshades, chocolate etc) are actually oral Raynaud's.

[Kris4444]

I was wondering what tests made them diagnose you with MCAD? I have been to Mayo for my flushing and had been working with an immunologist as well. Recently I decided I needed a break from my meds and I am weaning off. I am starting to get some major issues back, flushing and vertigo with exercise and mini (what I can only describe as panic attacks??) attacks that make me feel like you would when you just fall asleep and then jerk awake, only I'm at work....

Anyway, I do have very high NE levels but my immuno says that I don't have any mast cell issues. She had me on Xyzal 2x a day as well as Singular, Vitamin D, B12 and I was taking Valtrex for chronic EBV. My only positive tests were for high NE and I always test high for MCH and MCV.

Thanks.

Elizabeth you poor dear! I haven't been on in a while. So sorry to hear you are still suffering!

-Kris