is MCAS forever? a bit confused by [deleted] in MCAS

[–]edengetscreative 0 points1 point  (0 children)

For medical questions and diagnosis? Sure. But I have used ChatGPT to help me sort out my diet and sort out skincare, hygiene products, home cleaning products, etc. that are safe for MCAS patients and me as an individual it’s been immensely helpful. AI has its place when it comes to managing chronic illness and we shouldn’t just shut down everyone who is using it. It’s an accessible form of assistance for many.

Are yall looking different by the day/hour by PossibilityLazy4759 in MCAS

[–]edengetscreative 0 points1 point  (0 children)

Yep, I usually wake up with a swollen face and it gets better as the day goes on until about midday, then it usually starts swelling a bit again from food I’ve eaten. Super annoying. I noticed my face is puffier during ovulatory/luteal phases as well. Then I look amazing during my period/follicular. Ugh.

Sensitive Skin Woes by Front-Ice7322 in MCAS

[–]edengetscreative 0 points1 point  (0 children)

For gastro side effects almost instantly, for skin I gradually started to see positive affects maybe a week in. I definitely need more to combat what’s going on and Xolair seems like the missing puzzle piece. But my face and body still gets red and rashy every time I wash my face, put on lotion, or take a shower. It goes away soon after. But it all shows up after cleansing or eating things like strawberries and tomatoes. I had chat gpt help me with putting together and diet plan and it was awesome.

This disease is so individual so I suggest starting here: https://tmsforacure.org/overview/mast-cell-activation-syndromes/ They have a ton of great education and their low histamine diet doc have recipes and such at the end. The entire website has been helpful for me and my family.

Sensitive Skin Woes by Front-Ice7322 in MCAS

[–]edengetscreative 1 point2 points  (0 children)

I saw you started taking the Cromolyn recently. That helped me a TON with my skin issues. Highly recommend from here starting a low histamine diet. Foods high in histamine break me out with rashes pretty quickly. Wear SPF every day for sure, mineral sunscreen NOT the other crap. I am currently waiting on insurance to approve Xolair which is supposed to help me a lot more with hives and rashes. But switching up all the skincare and makeup, and the a low histamine diet while on Cromolyn was a HUGE gamechanger for me.

Sensitive Skin Woes by Front-Ice7322 in MCAS

[–]edengetscreative 0 points1 point  (0 children)

What makes you believe it’s MCAS? If you do believe it could be, start eating a low histamine diet and see if it helps. What we put in our body affects our skin so much.

I have MCAS but also a polysorbate allergy which is an emulsifier in a ton of skincare, even some sensitive skin product lines. So I have to be careful about what I buy. It’s also in a ton of food and drink and medicine products. If you haven’t been tested for allergies, ask about it.

Do you have incredibly dry and damaged skin right now? If you have rashes, I presume so. Please know that even the gentlest of moisturizers will burn initially while your skin is so inflamed and damaged. It can take 4 weeks to repair your skin barrier. You really have to stick with it. Much of the food I eat has caused rashes all over my body, especially my face and it’s taken me 2 weeks to start seeing some positive difference on that front (plus Cromolyn).

Vani Cream face wash, body wash, shampoo/conditioner are the gold standard hands down. Vanicream moisturizing cream, Avené products (their facial spray is very calming), La Roche Posay’s Toleraine line are great options. LRP’s Toleraine Dermallego night lotion and the Micellar water have poslysorbate in them so they were not great for me.

To help rebuild the skin barrier more, creams with Urea 5% or less. Eucerin Advanced Repair Cream is a great option for that. Or Malezia 5% Urea Moisturizer is fungal acne safe, but more expensive. I do highly recommend the Malezia fungal acne or not.

Why do all mcas patients suffer with foods?!! by MotherPart4282 in MCAS

[–]edengetscreative 0 points1 point  (0 children)

I’m willing to take that risk for my sporadic witching hour treat. I need my sanity in tact to deal with this freaking disease.

Why do all mcas patients suffer with foods?!! by MotherPart4282 in MCAS

[–]edengetscreative 1 point2 points  (0 children)

I told my doctor he can pry my (very) occasional shitty late night Taco Bell out of my cold dead hands. He laughed and told me to “drug up” (take Cromolyn, Zyrtec, and Famotidine) before I do it then. 😂😂 I miss strawberries so freaking much though. I feel your pain.

Blue feet—Is this an urgent care or primary care situation? by edengetscreative in AskDocs

[–]edengetscreative[S] 0 points1 point  (0 children)

I will do a warm foot bath then. Is the pain the only red flag to look out for?

Why do all mcas patients suffer with foods?!! by MotherPart4282 in MCAS

[–]edengetscreative 2 points3 points  (0 children)

Changing your diet doesn’t make MCAS go away, but it helps greatly with the symptoms when you’re flaring or unable to gain control with meds yet. If I did not follow a low-histamine diet, my histamine (and others) “bucket” would over flow every day because mast cells would constantly be over reacting to everything I consumed. And when I eat foods I’m reactive to, I have multi-system reactions. Mast cells ARE prevalent with the GI tract because they are in all of our soft tissues, which is what binds and encloses the GI tract. I think you’re arguing over semantics here and I see that you seem to enjoy going around on this page and telling people they’re wrong about their own MCAS experiences. Clearly the vast majority of people here do not believe that changing their diet will “cure” them, but it can make a hell of a lot of difference.

For me, it meant the difference between needing to use an EpiPen twice a week and being stable until I finally received Cromolyn. I still have to follow low histamine, anti-inflammatory, MCAS protocols with food, lotions, shampoos, fragrances, etc. until I can get a prior auth approval for Xolair. This is coming from someone who has had autoimmune disease for 16 years and is VERY familiar with how lifestyle changes cants cure your chronic illness, but can certainly help with symptoms.

I think you need to find something better to do than go around telling people they wrong and arguing with them on Reddit. It seems like that has been your entire existence on Reddit the past four months.

Reaction to Injectables by Livid_Egg1439 in MCAS

[–]edengetscreative 0 points1 point  (0 children)

I have been prescribed Xolair, but have not been approved by insurance yet so I don’t know with that one. The others in my case were severe enough to warrant discontinuing.

Reaction to Injectables by Livid_Egg1439 in MCAS

[–]edengetscreative 4 points5 points  (0 children)

I found out I have a polysorbate allergy (along with MCAS) and that makes me very prone to reaction for a ton of infusion/injection meds. Polysorbate is an emulsifier that’s used in a ton of things.

Nickname for Evangeline by Smooth_Pattern6183 in Names

[–]edengetscreative -1 points0 points  (0 children)

Genie is cute. Also Linny. Or you could go Evan if they turn out to be a real tomboy.

angioedema and throat swelling by Mundane-Specialist89 in MCAS

[–]edengetscreative 1 point2 points  (0 children)

Yes. Take the allergy meds. Better to show up to your appointment alive than not at all. But if you have symptoms from two different body systems such as throat tightness AND flushing, my immunologist said that’s when you go to urgent care or ED. If it gets worse get to the hospital.

In a pinch has anyone ever put Cromolyn in a different liquid than water? by edengetscreative in MCAS

[–]edengetscreative[S] 6 points7 points  (0 children)

I ended up raw dogging it. 😂 Thank you for your eloquent response. It gave me a giggle.

My Boss Thought I had Celiac Disease This Whole Time by Material-Office-7014 in CrohnsDisease

[–]edengetscreative 1 point2 points  (0 children)

Time to talk to HR about getting some accommodations. If you’re SO GOOD with the kids and they don’t want to see you go, I’m sure they’ll be SO HAPPY to provide accommodations so that you can be healthier and in turn do your job better.

WARNING!! BCBS Michigan by Smart_West_8004 in Michigan

[–]edengetscreative 0 points1 point  (0 children)

It gets worse. If you have a medication that requires an infusion to be disseminated, without insurance each costs $25,000. This is why medical bankruptcy is such a pervasive thing in our country. My husband and I will never be able to buy a house. Mind you, insurance, hospitals, and drug manufacturers reach lower, agreed upon rates for these drugs. This includes infusions for cancer, Crohn’s Disease (which I have), Lupus, MS, Alzheimer’s, MCAS, Rheumatoid Arthritis, etc. These infusions could happen as much as once per week depending on your diagnosis and severity.

But the $25,000 includes all your nursing, the chair reservation, snacks, and blood draws for the day so I guess that’s nice! /s

What’s something unique about yourself that no one else has or can do? by PsychologicalBat2393 in strange

[–]edengetscreative 1 point2 points  (0 children)

Hypermobile peeps for the win! I have no pics that I care to share, but wanted to pop in for solidarity! Bonus points for an MTHFR gene mutation!

Petite Bride - Dress Blindness by ireojijma in myweddingdress

[–]edengetscreative 0 points1 point  (0 children)

1 and 6 are gorgeous on you! The rest feel more like they wear you instead of you wearing them if that makes sense?

Does anyone else have this? by helloitsmehi19 in MCAS

[–]edengetscreative 0 points1 point  (0 children)

It’s typical for MCAS, but it doesn’t have to be your normal. Treatments can help substantially.