LymeNet Flash: MCAS people, Zantac question

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»	LymeNet Flash » Questions and Discussion » Medical Questions » MCAS people, Zantac question

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Author

Topic: MCAS people, Zantac question

unsure445
LymeNet Contributor
Member # 15962

posted

For those that have MCAS, are you continuing Zantac despite the health damaging chemicals in it and if not, what are you taking in place of it?

I am really struggling off of Zantac with increased symptoms that I can't get to go down. Seeing my allergist and llmd in several weeks but not wanting to wait that long to get on something.

Would love to hear what others that have actual MCAS are doing or what your docs have recommended. Thank you!

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unsure445

Posts: 824 | From northeast | Registered: Jun 2008 | IP: Logged |

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

posted

My allergist put me on maximum strength Pepcid AC. I buy the generic brand which saves me a ton of money. I haven't had any issues with it and been on it for a couple of years.

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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: 6525 | From Columbus, GA | Registered: Jul 2004 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

I’ve always taken Pepcid because Zantac made my stomach hurt. My husband takes Zantac. I need to go buy the extra strength Pepcid tomorrow.

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

Posts: 96238 | From Texas | Registered: Feb 2001 | IP: Logged |

unsure445
LymeNet Contributor
Member # 15962

posted

Thanks for your replies. I like my stomach acid/digestive fire intact if possible. Such a drag that these are the only options.

If I hear of any herbal or supplemental remedies I'll post back on here.

Thanks Lymetoo and aklnwlf!

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unsure445

Posts: 824 | From northeast | Registered: Jun 2008 | IP: Logged |

unsure445
LymeNet Contributor
Member # 15962

posted

Do either of you do/take anything to replenish stomach acid? Do you get concerned about Sibo or GI imbalance on these PPI's?

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unsure445

Posts: 824 | From northeast | Registered: Jun 2008 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

I'm sure the lack of acid is a concern, but I have no evidence that I have a lack of it.

I don't tolerate adding any acid. I've tried.

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

Posts: 96238 | From Texas | Registered: Feb 2001 | IP: Logged |

unsure445
LymeNet Contributor
Member # 15962

posted

Thank you Lymetoo.

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unsure445

Posts: 824 | From northeast | Registered: Jun 2008 | IP: Logged |

rosiegeorge
LymeNet Contributor
Member # 27518

posted

I'm trying not to dose every day but am still using. I have severe MCAS that it's even reached my bone marrow from my last bone marrow biopsy. Dr's are worried it will convert into mastocytosis.

None of the other GI meds worked for me so I'm quite torn. A huge game changer for me was starting on cromolyn oral solution & nasalcrom also. This has helped leaps and bounds. Enough to reduce my other mcas meds. If you haven't tried it yet definitely ask for a prescription!
As of now, I can't go more than 3-4 days without Zantac. I'm hoping only taking it 1-2 x week will lessen my risk vs. daily dosing.

Posts: 157 | From Colorado | Registered: Aug 2010 | IP: Logged |

unsure445
LymeNet Contributor
Member # 15962

posted

Thanks Rosiegeorge. I can't imagine where I'd be without Cromolyn, its a lifesaver. I succumbed to Pepcid for now to get things back under control.

Pepcid has its adverse affects too so hoping to find a healthier solution in the near future.

I'm so glad that just a few doses of Zantac per week is helping you.

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unsure445

Posts: 824 | From northeast | Registered: Jun 2008 | IP: Logged |

LisaK
Frequent Contributor (1K+ posts)
Member # 41384

posted

just wondering if anyone has any updates to this question- I mean answers.

[Smile]

-

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Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

Posts: 3588 | From Eastern USA | Registered: Jul 2013 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

I don't think Zantac is available, so it's a moot question.

Most of us take Pepcid.

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

Posts: 96238 | From Texas | Registered: Feb 2001 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

I LOVE my cromolyn sodium! Total lifesaver .. nasalcrom too.

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

Posts: 96238 | From Texas | Registered: Feb 2001 | IP: Logged |

LisaK
Frequent Contributor (1K+ posts)
Member # 41384

posted

yes, raditadine (sp?) is still purchasable I think and I notice lots of people still use it, so they either stockpiled before removal, or they are getting it somewhere. [Eek!]

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Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

Posts: 3588 | From Eastern USA | Registered: Jul 2013 | IP: Logged |

spookydew
LymeNet Contributor
Member # 8432

posted

What is MCAS? And what does an antacid have to do with allergies? Sorry for the dumb questions but I have been gone many years. How would an antacid help allergies?

Posts: 290 | From ohio | Registered: Dec 2005 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

I'll bring you a link, spooky... Lots of us have it, either diagnosed or as yet undiagnosed.

Pepcid and Zantac are H2 receptors, which help block histamine responses.

There are about 60 links here, so just pick one and GO!! LOL

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

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--Lymetutu--
Opinions, not medical advice!

Posts: 96238 | From Texas | Registered: Feb 2001 | IP: Logged |

spookydew
LymeNet Contributor
Member # 8432

posted

Oh my I thought I just still had multiple chemical

sensitivities but I had anaphylactic reaction to

honey bee and have lesser reactions to most insect

bites. My arm swells a lot with a little tiny

sweat bee. I never thought that could be something

else. Also, one of the links talks about certain

probiotics Lactobacillus rhamnosus and

bifidobacter species reducing histamine. So I've

been eating sauerkraut for probiotic effect for

the atbs and just now read that these two species

are in sauerkraut. Anyway I just felt so good this

week eating it. Could this help and work that

quickly? Just reading all these links today have

made me feel like a hypochondriac all over again.

I wouldn't have figured this out on my own. I'm

much older than when I was here last and just not

really up to all that I used to be.

Thanks for all the good links

Posts: 290 | From ohio | Registered: Dec 2005 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

My problem with sauerkraut is that some of the strains are not good for histamine. That was my trouble.

So just eat small portions. Don't overdo it.

Sounds like you could have MCAS. [Frown]

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

Posts: 96238 | From Texas | Registered: Feb 2001 | IP: Logged |

spookydew
LymeNet Contributor
Member # 8432

posted

I was surprised to see this about MCAS. I'm glad I found it. I only eat two forks full of sauerkraut each day 9am and 9pm same time I did probiotics. I have to be careful of the goiter I've had since early 90s. It feels so much better not taking all those capsules and not worrying about them getting stuck in my throat.

Posts: 290 | From ohio | Registered: Dec 2005 | IP: Logged |

LisaK
Frequent Contributor (1K+ posts)
Member # 41384

posted

I can never eat sauerkraut any more.
right now everything I eat, (just about) gives me a mast attack.

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Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

Posts: 3588 | From Eastern USA | Registered: Jul 2013 | IP: Logged |

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