u/Planet_Ogo

My facial flushing is out of control, and - like I mentioned in a recent post - I'm only about a week in on treatment (cetirizine and Famotidine)... Which isn't doing anything for the flushing.

I haven't been active at all in a while (variety of reasons), but decided to do ten minutes - easy pace - on the elliptical after supper today.

About ten minutes after finishing, all of a sudden my face felt like the flush just dropped right out of it?

That's the only way I can describe it.

My husband rates my flushing on a scale of 1-10, I'm generally at a 6-7 lately, and I've been at a 5-6 all day.

This went down to 3, out of nowhere. I NEVER get down to 3 anymore, aside from first thing in the morning, before getting out of bed.

My face has been hot and awful all day, I was expecting it to get WORSE from exercise.

Is this a known thing? Or is my body just being its usual completely nonsensical BS self?

I just want to thank all of you for having so much great information on this Reddit.

I've been lurking for weeks, piecing together a puzzle. Thanks to you guys, I now have a clinical DX of MCAS and EDS.

Long story short, reading about how iron supplementation seems to be a common flare trigger sealed the deal for me, and sent me down the path that ended up connecting the dots on decades of random body weirdness.

I am unfortunately another victim of the Fluoroquinolone to MCAS pipeline.

6 years ago, 4 Cipro pills got me.

Looking back, I'd had some symptoms before - facial flushing (mild at the time), weird food allergies coming out of nowhere, chronic sinus problems that started out of the blue a decade earlier. They'd just never seemed connected.

It was all just mildly annoying, Cipro dropped a bomb on it.

So... Now I'm feeling extra rage towards the doctor that did this to me, while also trying to stay Zen so I don't flare up even more. Yay!

Anyway, I didn't mean to rant.

I haven't started any treatment yet, as my Dr wants to do some reading on it first.

I've had some really awful experiences with doctors, so I kind of don't care that he's not a specialist, because he listens and is willing to go learn. Really great guy.

Anyway, I've got a lot more reading to do, but I wanted to say I appreciate all of you.

Well, long (LONG) story short, it looks like those 4 Cipro pills - 6 years ago - triggered MCAS and EDS. Got the DX this morning.

(I'm happy to answer any questions about what whole thing, I'm just not feeling like typing it up for the hell of it, LOL).

So... I guess that explains why my tendons are still such horseshit, so many years later.

It actually explains a lot of stuff that's totally unrelated to the great Cipro-ing of 2020.

I'm still trying to process everything.

I guess I'm kind of wondering how many of those of us that were primarily fucked in the tendons are also EDS people - maybe without even knowing it?

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Did a search, was shocked to see the most recent thread was two years ago.

So, with restaurants closing all the time and whatnot... What's the current best bet for getting Chinese food delivered?

Thanks!

Hey all,

I am SO CLOSE to possibly putting out one of the fires that Cipro left me with, but it sounds like I'll need to experiment with baby aspirin.

I haven't taken a single NSAID in over 5 years, after an ibuprofen fucked me up a few months after getting floxed.

I've read a bunch of posts here about how it'll be fine for some and trigger others, but here's what I'd like to know:

Have any of you been able to successfully take low dose aspirin, if ibuprofen flared you?

Just wondering if I should expect that aspirin 6.5 years in will be a no-go, because ibuprofen a few months in was a bad time?

So, I've been ~medically complicated~ since taking 4 ciprofloxacin pills, 6 years ago.

I'm also perimenopausal, which has definitely muddied the waters when trying to figure out what's going on with my body.

Long story short, MCAS seems to be the most likely explanation behind a host of issues.

I know it's going to be a bit until I can get an actual dx, but I'm the meantime, I'm going to try and treat it like MCAS and see how things improve.

The big question I have - that, really, would probably be a help whether or not it's actually MCAS - is about iron.

Ever since the Cipro, I can't tolerate iron. I've been iron deficient anemic for 30 years, never ever had a problem with iron before then.

Iron ended up being a trigger for my Cipro related issues (tendon), but supplementing with antioxidants knocked that back enough that the tendon flares weren't super bad.

The problem is that we've now figured out that the iron is also a trigger for my facial flushing. REALLY BAD.

Getting off the iron chills it out a bit, but that's not a long term solution - I'm REALLY anemic, after years of not being able to take iron because of the Cipro.

I JUST had the idea to Google MCAS and iron together, to see if that's another puzzle piece that fits, and I see several references to "not tolerating iron"... But most seem to be about gastro issues.

I'm wondering if anyone has experience with facial flushing and iron?

The Iron that's been setting me off is Hemeboost.

I need to look more into the MCAS -tolerated iron suggestions, but I did see heme as a recommendation.

I'm trying to figure out what all I'm asking here, but ... If flushing in MCAS does get tied to iron, would the "MCAS friendly" iron suggestions also cover that, where I'm mostly just seeing gastro issues mentioned?

I haven't had any gastro side effects at all on the iron, just the tendon and flushing.

Sorry if this is a lot, I definitely have more reading to do, but figured I'd see if anyone has experience with this particular flavour of body nonsense.

Thanks in advance!

I think I've mentioned this here before, but I need to be on iron, as my Ferritin got low enough that it's either iron supplements, or an infusion.

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Infusion sounds far worse - way more risky.

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The supplements caused me flares, but I seem to have them managed through an insane regimen of antioxidants.

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Flonase is another bad trigger for me. A couple weeks ago, I had a really painful, crippling flare and had to go off both, until the flare calmed down.

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I've since gone back on the iron, no problem.

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So.

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I was doing some reading, and it sounds like it's a better idea to take iron every second day, so I'm starting doing that.

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I would really, really love to go back on flonase. I CANNOT handle the nasal swelling, and it was working really well for that.

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I'd been thinking that doing flonase every second day might be enough to get the job done, hopefully without causing a flare.

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So here's my question, in case anyone knows more about this or just wants to logic it out with me:

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Where iron takes a while to absorb and flonase is sprayed into the nose (lots of blood vessels)... How should I space these out, to hopefully lessen my chances of a flare?

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Conventional wisdom would say alternate them on different days, but I'm almost thinking I should do them both the same morning.

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In my mind, the spray would hit right away, while the iron pill would need some time to absorb - and cause the oxidative stress.

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I don't know if one causes MORE oxidative stress than the other, but it's my hope that if I cut my iron intake in half, taking the every other day dose of flonase would basically just be swapping out the same amount of ~problem~, if that makes sense?

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Without the flonase, the flares were pretty much quashed, while still doing iron daily.

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Anyway, thoughts?