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»	LymeNet Flash » Questions and Discussion » Medical Questions » best one thing for MCAS?

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Author

Topic: best one thing for MCAS?

dogmom2
LymeNet Contributor
Member # 23822

posted

reacting to everything it seems. llmd wants me to take several things for mcas, but likely can't pull that off.

Thinking of trying ketotifen to start, or maybe quercetin. If I only try one supplement/med which is the most gentle?

She also wants me to try generic compounded allegra.

Posts: 857 | From northern california | Registered: Dec 2009 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

I like cromolyn sodium .. much safer and works very well. It's a prescription.

I am unable to take quercetin.

I do take Zyrtec and Pepcid for the H1 and H2 combo.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96222 | From Texas | Registered: Feb 2001 | IP: Logged |

SickSam
LymeNet Contributor
Member # 45330

posted

I react to a lot of stuff too, it's hard for me to tolerate a lot of things.

I've started taking Claritin plus Pepcid as an h1 + h2 blocker combo. I was amazed at how much better Pepcid by itself made me feel. Adding Claritin just increased the benefits.

I did have to work up to my doses, but it only took about 3 days to get to a full dose. I still plan on going higher on claritin eventually. Most meds take me weeks to get to full dose. My understanding is the antihistamines are some of the safest meds you can take. I plan on adding cromolyn soon too.

Quercetin didn't do much for me, but maybe my dose was too low, I'm not sure. Studies say it can be very good for MCAS.

Posts: 748 | From Texas | Registered: Feb 2015 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

Sam .. Do realize that Claritin may begin to keep you awake at night. I get rather wired when I take it.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96222 | From Texas | Registered: Feb 2001 | IP: Logged |

dogmom2
LymeNet Contributor
Member # 23822

posted

lymetoo, are you taking the cromolyn sodium in the nasal spray, or in a different form?

Posts: 857 | From northern california | Registered: Dec 2009 | IP: Logged |

shoeless joe
LymeNet Contributor
Member # 45835

posted

low histamine diet,quercetn,ester C, and occasional DAO supplement here.

Is there an OTC oral comolyn ?

Posts: 227 | From fairhaven ma | Registered: May 2015 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

Cromolyn is only by prescription.

You can buy nasalcrom, which may help a tiny bit.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96222 | From Texas | Registered: Feb 2001 | IP: Logged |

SickSam
LymeNet Contributor
Member # 45330

posted

Yeah Lymetoo, it does make me feel slightly wired, but the insomnia hasn't been too bad yet. Hoping I can stick with it since it's also one of the main things Dr. C is pushing people to try right now.

Posts: 748 | From Texas | Registered: Feb 2015 | IP: Logged |

dogmom2
LymeNet Contributor
Member # 23822

posted

is Cromolyn available in oral form, not just nasal?

The dao supplement, can you get it without the bromelain, I can't tolerate that.

What does the quercetin do?

Seems like the longer I have lyme, the more syndromes I develop and the more things to figure out. Guess it's similar for many of us.

Posts: 857 | From northern california | Registered: Dec 2009 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

quote:
Originally posted by dogmom2:
is Cromolyn available in oral form, not just nasal?

Yes, as a prescription.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96222 | From Texas | Registered: Feb 2001 | IP: Logged |

dogmom2
LymeNet Contributor
Member # 23822

posted

well can't tolerate the fexofenadine(allegra) or ketotifen, tried other antihistamines in the past for gerd, and couldn't do those either.

Anyone taking the dao supplement and having luck with that?

Posts: 857 | From northern california | Registered: Dec 2009 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

You can't do Zyrtec?

I never tried DAO .. most contain Vit C and other sals .. can't do it.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96222 | From Texas | Registered: Feb 2001 | IP: Logged |

aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960

posted

I'm seeing benefits with horse chestnut. I use Now brand 300 mg which I take one pill in the morning and one in the evening.

I tried quite a few herbs. Check out the MCAS thread from Lymetoo in General. Lots of info there.

Good luck!

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Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 6137 | From Columbus, GA | Registered: Jul 2004 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

Here's the link:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=036299;p=0

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96222 | From Texas | Registered: Feb 2001 | IP: Logged |

dogmom2
LymeNet Contributor
Member # 23822

posted

I can take the zyrtec so thanks for the suggestion. Just trying 1/4 dose to start.

Couldn't tolerate the other 2 compounded meds at all, even at very small amounts. funny that the over the counter drug is tolerable.

Posts: 857 | From northern california | Registered: Dec 2009 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

Most MCAS patients take an H1 and an H2 each day.

H1 .. Allegra, Claritin, Zyrtec

H2 .. Zantac, Pepcid

(not a complete list)

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96222 | From Texas | Registered: Feb 2001 | IP: Logged |

dogmom2
LymeNet Contributor
Member # 23822

posted

can't do zantac, guess i'll have to try pepsid again, gave me headache years before.

Are you taking singulair too for leukotrienes? Aspirin or advil?

My llmd wants me on a h1 and h2 blocker, ketotifen(can't do),singulair, advil or aspirin, and maybe dao enzyme.

Not likely to tolerate all that, my tinnitus gets louder with each med I take.

Posts: 857 | From northern california | Registered: Dec 2009 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

You may be sensitive to salicylates. They make my ears ring big time.

So .. no aspirin or NSAIDS for me.

Afraid to try Singulair. (side effects)

Can't take DAO due to the ingredients in most of them.

I never could take Zantac. Pepcid is OK now that I'm on cromolyn. I think it makes me retain fluid though. I take it when I feel like I have to.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96222 | From Texas | Registered: Feb 2001 | IP: Logged |

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