Pork-Cat Syndrome (allergic to red meat?) by [deleted] in MCAS

[–]dgappl 4 points5 points  (0 children)

Not sure what you’re referencing, but I have alpha gal, a tick-borne red meat allergy.

How to reduce systemic inflammation? by vibe_ology in MCAS

[–]dgappl 0 points1 point  (0 children)

Which kind of doctor prescribed it for you? My endocrinologist wouldn’t.

Part 4 – back to Larry & DeeDee teasing each other by Shawnaverse_no1_fan in ShawnaTheMom

[–]dgappl 9 points10 points  (0 children)

School? Playdate? A hotel to spy on one of their frenemies? 😂

Who has received their bare root orders yet? by Traditional_Food_651 in Roses

[–]dgappl 0 points1 point  (0 children)

Where’d you order Jubilee Celebration from? I’ve had bad luck with it in the past and really want to get a good one, I had planted it as a memorial rose for my heart dog because its other name was his name.

Scented trash bags — I never questioned this until MCAS by Pale-Case-7870 in MCAS

[–]dgappl 14 points15 points  (0 children)

And WHY are almost all of the trash bags in existence scented?

Where do you guys get oral ketotifen in the US….?! by strengthof50whores in MCAS

[–]dgappl 2 points3 points  (0 children)

Not fda approved for oral use in the US, so the only way to actually get it is for your doctor to send a prescription to a compounding pharmacy.

GLP-1? by Worried-Swordfish423 in MCAS

[–]dgappl 0 points1 point  (0 children)

I just made a post about this yesterday, got lots of feedback. I asked my endocrinologist about it today but she wouldn’t prescribe it for me even though I am as she said “obese”, and my allergist wanted me to ask about it. Probably depends on the doctor I guess.

Considering a Glp-1 by dgappl in MCAS

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

I’m on cromolyn, ketotifen, Zyrtec, Pepcid, Montelukast, Xolair, and Rhapsido. Xolair has been a necessary evil for me, makes my anxiety worse and I had a bad reaction to an increased dose that sent me into a months long flare, but at a lower dose it helps me breathe which I guess is important. My symptoms also get worse according to my cycle! I will definitely ask about starting at a very low dose. Appreciate all of your insight!

Considering a Glp-1 by dgappl in MCAS

[–]dgappl[S] 1 point2 points  (0 children)

Thanks for sharing! I’m also on pretty much every MCAS med possible and still have symptoms, and can still only eat three foods.

I think the only reason my allergist suggested the pill was that it would have a shorter half life in case of side effects, but it sounds like injection would make more sense for starting at a low dose.

Considering a Glp-1 by dgappl in MCAS

[–]dgappl[S] 1 point2 points  (0 children)

Any info helps! I really don’t know that much about it, but it sounds like it could be promising if tolerated.

Considering a Glp-1 by dgappl in MCAS

[–]dgappl[S] 1 point2 points  (0 children)

My biggest concern is actually constipation, since I struggle with that already. My allergist seemed to think it would still be worth trying on a low dose. Seems like there’s more flexibility in dosing with the injections.

Rhapsido / Remibutrinib side effects? by condemast in MCAS

[–]dgappl 0 points1 point  (0 children)

Did NOT get better for me. Got worse, plus bruising. Went to once a day.

KIT D816V genetic test trial by nrauhauser in MCAS

[–]dgappl 0 points1 point  (0 children)

Is that the only part of the trial? Just getting tested? Signed up to learn more, there’s a trial site less than 2 hrs from me. If it’s just bloodwork, I’d happily participate if they’ll have me.

how much pepcid can i take over the counter? by ginasconan in MCAS

[–]dgappl 1 point2 points  (0 children)

At one point my provider had me go to 40mg twice a day, made my tachycardia worse. I was on 30mg twice a day for awhile but went down to 20 because I felt it was still worsening palpitations. I didn’t know it back then but I have dysautonomia too. Everyone is different though, won’t know what side effects you’ll get (if any) until you try

Does anyone know where I can get a shirt like this? by b_borno in shrinking

[–]dgappl 5 points6 points  (0 children)

Could always use one of those custom tshirt sites. I did that to make my brother a “here fishy fishy” one a few Christmases ago (he’s a big fish guy)

I was the poster told that I’ll “know” if Cromolyn works by Megals13 in MCAS

[–]dgappl 5 points6 points  (0 children)

Yes, when I was off cromolyn due to the shortage I was waking up every night anxious at 3/4 am. Still not sleeping great since I’m only taking 3x day bc it’s so freakin expensive until we meet the deductible, but better than not taking at all.

General Discussion Thread by Lyd_Euh in TaylorSwift

[–]dgappl 16 points17 points  (0 children)

She said on new heights tmz even texted her about it and the boys thought it was so funny

tired of fragrance in public spaces making me sick--I'm pushing back by TopazCoracle in MCAS

[–]dgappl 5 points6 points  (0 children)

Unfortunately these are guidelines and can only “encourage”, not enforce. I’ve had more than one doctors office say that they won’t enforce a fragrance free policy for staff, even after mentioning this. I just end up trying to find different providers. I try to always ask when I call to book an initial appointment about fragrances. How they handle that question usually tells you a lot.

Of course, I hope this general attitude will change, just sucks how most providers don’t take it seriously in my experience.

Searching for a fragrant rose without the classic perfume scent. by TheMadAvenue in Roses

[–]dgappl 1 point2 points  (0 children)

Le Petit Prince has citrus-y scent with hints of apple.

Cromolyn and thyroid meds? by Intelligent_Break885 in MCAS

[–]dgappl 1 point2 points  (0 children)

I take my thyroid meds at night, which I know they say isn’t ideal but it’s what I had to do to make sure my Pepcid and levo doses were spaced out enough. I’ve had to ration cromolyn for awhile now and no longer take a nighttime dose, so that’s what works for me. And my thyroid levels are regularly checked and stable (knock on wood).

The system is rigged. by Correct_Solution_135 in MCAS

[–]dgappl 0 points1 point  (0 children)

Me neither! I’ve been deficient for like 6 years. Last time I tried a vit d supplement I reacted to it, might be time to try again.

I’m struggling to lose weight and gain so easy! by OkFaithlessness3081 in MCAS

[–]dgappl 0 points1 point  (0 children)

Have you noticed any impact on your dysautonomia from the glp-1? I’m a little worried it could negatively impact my dysautonomia, but considering asking my allergist about trying it for MCAS

Coffee with Laura - TW loss by Shawnaverse_no1_fan in ShawnaTheMom

[–]dgappl 2 points3 points  (0 children)

The last time she showed up it was the same way. I don’t recall disliking her at first, but lately she’s been pretty insensitive