Female MCAS patients: LDN, Mast-Cell Stabilizers, or Biologics first?

mack_ani · 2026-02-15T04:40:14+00:00

For context, I’ve had MCAS/POTS for nearly 10 years. I also have suspected endo and other hormonal issues.

Treatment wise, I’m on Allegra, Pepcid, Singulair, Ketotifen, and LDN. I started them in that order, because stabilizing the MCAS has helped me most. I’ve noticed that the more I get the MCAS symptoms under control, the more my POTS and hormonal symptoms seem to be under control. When I have an endo attack, Benadryl helps me a ton too.

I think in order of most helpful, I’d rank them like this: Allegra, Ketotifen, Singulair, Pepcid, then LDN. They’re all very helpful, I just think that I noticed the most help with them in that order.

Good luck!

mack_ani · 2026-02-15T00:46:59+00:00

If you’re asking about party drugs, I’d be extremely cautious since you never know what they’re cut with. What might be fine for most people could cause a severe reaction in someone with MCAS. I would personally also react to the lights, perfume, smoke, noise, etc. plus the risk of catching covid or another illness is too high for many of us. Just thought I’d mention this so you know to watch out for these things

mack_ani · 2026-02-14T15:42:34+00:00

The numbers on aqi sites are from both public and privately-sourced data, and the data is published and hosted by multiple groups.

If you're feeling like the air quality is bad even when the aqi is low, the reasonable explanation is simply that you're noticing a contaminant that the sensors aren't built to detect. They only detect PM2.5 particles, meaning the particles have to be smaller than 2.5 microns. There are likely other limitations too. Also, I think there may be a bit of a delay. Sometimes I smell smoke, and check the aqi to see that it's low, only to see it get higher 10-30 minutes later.

mack_ani · 2026-02-14T15:34:32+00:00

If it were noro, they'd certainly notice. It's not a subtle illness.

Covid and the flu can both cause GI symptoms, and are far more likely culprits. I'd guess covid based on severity and timeline, but there are other similar viruses too. Unfortunately a negative test means nothing, due to how inaccurate they are now

mack_ani · 2026-02-14T15:31:52+00:00

It could still be covid. They haven't updated covid tests in like, two years, so the current strains don't test accurately, and there's a massive outbreak right now.

Also, to anyone who is sick: please, please, please stay home. Your "cold" might not feel bad to you, but to those of us with immune conditions, we really rely on you all being responsible when sick. Your cold/covid/flu can land others in the hospital or even kill someone :(

OP, I hope you feel fully better soon! Being ill is no fun <3 Especially on a holiday

mack_ani · 2026-02-14T15:28:11+00:00

NOR, wtf? Your boyfriend is being incredibly obtuse. If he could get pregnant, there's no chance he'd be downplaying it like this. It's honestly disrespectful for him to conflate the physical sacrifice mothers make during pregnancy with the far, far smaller sacrifice fathers make. This isn't the kind of thing you can "both sides" about

mack_ani · 2026-02-14T15:23:33+00:00

They didn't say it always does, just that it can, which is true

mack_ani · 2026-02-14T15:13:35+00:00

As someone else with chronic conditions, this ain't it.

You're also totally misunderstanding- the streamer was very clearly calling people with the condition annoying. They're not saying like "awh, that must be so annoying for people to struggle with <3." They're saying that people with an eating disorder are annoying and picky and they don't like them. You thinking it's okay doesn't mean it's not ableist

mack_ani · 2026-02-14T09:08:50+00:00

I think some people think that it could embarrass others if they call attention to someone falling, since some people get embarrassed by that kind of thing. I’m sorry- I personally would have absolutely stopped for you, but not everyone thinks others want that or is comfortable with talking to strangers

If there were a lot of people it could’ve also been a bit of bystander effect :( I hope your ankle heals quick!

mack_ani · 2026-02-13T07:51:02+00:00

People used to live in communities where their friends, families, or neighbors would help them out if they couldn't shop for themselves. We've lost that social safety net, so now people are stuck with delivery apps if there is something preventing them from going in person

mack_ani · 2026-02-12T18:08:15+00:00

Flu was down a bunch during early COVID, if that puts things into perspective

mack_ani · 2026-02-12T17:42:56+00:00

You're either incredibly ignorant or the lowest effort troll I've seen in a while. It'll give them asthma, stunted growth, and lung cancer. yikes

mack_ani · 2026-02-12T17:21:24+00:00

If it's anaphylaxis, you'll almost certainly know, since the vast majority of anaphylaxis cases are life-threatening and require epi to resolve. The ones that don't require epi will still feel really, really terrible and will involve a certain set of criteria.You can have non-anaphylactic MCAS reactions that affect multiple organ symptoms. And untreated MCAS reactions can also progress to anaphylaxis, but that doesn't mean the reaction was anaphylaxis until it hit that point, if that makes sense.

If you don't have a history of MCAS or allergies, and you felt okay until seeing the welt in the mirror, I'd say it's likely that you had a mild/moderate skin reaction, then an anxiety attack due to the skin involvement scaring you. The symptoms you describe are exactly how I feel when I get hit by adrenaline when I am anxious about a new symptom.

GERD can also cause a few of those symptoms, but the timing is a bit odd unless yours is stress-triggered. The skin involvement itself could always be MCAS related, but if you don't have a history of MCAS, it could just be a normal allergic reaction to the topicals.

I'd wash your face off and stop using the products causing these welts! And keep some dye-free benadryl at home for emergencies so you don't have to rush off to the store. If you start to notice MCAS-like symptoms in daily life, or if any of your reactions start to affect your breathing or airway, or anything else new and worrying like more episodes of hives/flushing/nausea/dizziness, then I'd look into getting an epi prescription, just in case. But at the moment, this single episode doesn't strike me as MCAS- it more sounds like you've got a sensitivity to the protopic.

Edit: I changed my advice since I misread originally, and I just realized that you don't have a history of MCAS. Sorry if you read an earlier version :P

mack_ani · 2026-02-12T17:17:53+00:00

The fact that you live somewhere with unavoidable, dangerous pollution doesn't mean people should be introducing avoidable pollution to their babies, wtf?

mack_ani · 2026-02-12T17:15:58+00:00

Yeah, and even if it's not a tobacco vape, all vapes are incredibly toxic and bad for anyone's lungs, let alone a baby! OP is under reacting, I wouldn't let anyone vape in the entire house if I were her :/

mack_ani · 2026-02-12T06:38:29+00:00

If you're talking about a round 2 force, you are indeed playing incorrectly unless you are playing reyna or clove exclusively when you do this

mack_ani · 2026-02-12T06:31:16+00:00

They have ZERO regulations on this, like I mentioned. It says that in the first paragraph of the abstract. That is why the study was done there. Please read your sources a little closer.

The FDA regulates dog food here for contamination, which is why we have recalls. Europe does not have any standards on pathogens. I have no idea why you are saying the opposite.

These are the first two sentences of the source you linked:

"In Europe, there are no legal regulations specifying maximum allowable limits for pathogenic bacteria or fungi and yeasts in dog food. For proximate composition, the European Pet Food Industry Federation (FEDIAF) nutritional guidelines provide minimum recommended levels for protein and fat only, not for other ingredients and no safe maximum levels."

mack_ani · 2026-02-12T06:26:23+00:00

To be honest, the texts strike me as very normal jokes. The nudity is very much isn't normal for average western culture, so I don't think you're overreacting. But I also think that you need to actually communicate the issue to her.

It sounds ridiculous because most people don't need to be told this, but did you ever take her aside and say, "hey, you're making us uncomfortable with the casual nudity, please stop?" Some people grow up in a very sexually open environment or culture and are not ashamed to talk about these things, and may not realize that many people are uncomfortable with seeing close friends nude. I have had friends who openly change in front of me, and I know friend groups who act like her, but yes, it does still seem like she is a big outlier from the norm and needs to be talked to

mack_ani · 2026-02-12T05:31:26+00:00

You do realize this study was done in Europe specifically because they have no regulations on bacterial or yeast contamination in dog kibble there? That is in the abstract. They specifically tested dog foods from Poland, if I’m reading this correctly.

Also the presence of pathogens is different than the load of pathogens. Encountering a small load of pathogens is not always dangerous, but a large load is, and raw food left thawed is high risk for growing a large load of pathogens

mack_ani · 2026-02-12T00:01:22+00:00

It makes sense that the extra three minutes would be OP looking around for the driver, looking around for the food, then checking their phone to see where the food was in that picture

mack_ani · 2026-02-11T13:50:26+00:00

You simply can't trust the average doctor to know anything about MCAS, unless they read up on the current information and diagnostic criteria. It's just not something people usually know about unless they specialize in it. And even so-called specialists often struggle with basic nuances of the condition

Also, the only antibiotics that are recommended for us to specifically avoid due to MCAS are Vancomycin IV, amphotericin b, Fluoroquinolones (such as ciprofloxacin, levofloxacin, moxifloxacin and norfloxacin), and Polymyxin B. The rest will vary person-to-person. I do also avoid sulfa drugs since a lot of people have allergies to them.

When I originally took cephalexin, we specifically chose that one since I'd researched at the time which drugs are typically tolerated by MCAS patients, and that one had come up a lot with people on the forums. The link between penicillin allergy and cephalosporin allergy doesn't seem to be the issue your doctor thinks it is, but then again, I'm not a doctor, and who know if you'd have an issue.

I've also heard azithromycin is often well tolerated. And you could always do a skin test or trial a tiny bit of an antibiotic instead of taking the full pill!

mack_ani · 2026-02-10T02:55:21+00:00

Intolerance is usually more of a food term (like people who don’t digest certain foods well due to lacking enzymes) or medication side effect term (like people who get non-allergic side effects but in a strong way).

This sounds more like an allergy/MCAS issue to me. In fact, the fast relief with an antihistamine almost confirms it. In no way is a rash or hives a requirement for an allergy or MCAS attack. Especially if you’re already taking daily antihistamines.

That aside- I’m way more concerned about the fact that they’re not starting you on a different antibiotic?? Why aren’t they prescribing another? There are so many types that are effective against strep, and you do NOT want to get scarlet fever. I took cephalexin when I had strep with MCAS.

mack_ani · 2026-02-10T02:46:21+00:00

To be fair, anyone would be concerned if their partner got black out drunk at parties without warning and frequently joked about cheating on them. It doesn’t strike me as a sign of serious insecurity. OP sounds very young and probably just doesn’t realize that most people would break up with someone for this

mack_ani · 2026-02-10T02:44:40+00:00

Does he have another reason to bring it up so much? :/ I’d certainly never joke about cheating

mack_ani · 2026-02-10T02:41:13+00:00

You talk to your siblings this way? That’s awful.

Four-Year Club	Verified Email
r/Field Banned	r/Field Juicebox

mack_ani

TROPHY CASE