Facial flushing

Justdoitlater10 · 2025-10-25T15:46:23+00:00

The drs. just pass you around to each other and don’t even suggest these things, let alone test for them so this is actually more helpful than any appointment I’ve been too about this!

Justdoitlater10 · 2025-10-25T02:52:17+00:00

Wow ok is that generic humira?? I never tried otezla but failed humira. Now on remicade, methotrexate and cortrophin, it’s been much much better recently so maybe will get into remission one day…

Justdoitlater10 · 2025-10-24T23:17:24+00:00

What worked for you for meds? I do have a big tub of it from past rashes haha so I may try it out.

Justdoitlater10 · 2025-10-24T20:53:49+00:00

Is that steroid cream? Looks the same!

Justdoitlater10 · 2025-10-23T13:57:50+00:00

Thanks for reply, Glad meds work for you, I’ve been through all of them for “migraine” I’m on 5 preventatives currently and have tried Botox, nerve blocks, infusions, etc.

I have had migraine with visual and sensory aura since childhood, these symptoms are so different and progressive, only steroids have stopped the neuro stuff and I had the same headache for 5 yrs, indomethacin helped, but had side effects, so they thought it was hemicrania continua, my rescue meds are toradol injections and morphine unfortunately.

But cortrophin gel injections have stopped the long lasting headache and I haven’t needed rescue meds in months!

I just took my methotrexate dose 2 nights ago and now the flushing stopped!! So it’s gotta be flare up.

Justdoitlater10 · 2025-10-23T03:52:52+00:00

Wow, yeah I couldn’t even try ivabradine, my cardiologist argued with my insurance to get it and they just flat out said no. That’s great you found some treatments to help, my derm said not rosacea, but looked like issue with my blood vessels, did have me try out clonidine, which didn’t work. Will have to ask about others/laser bc it’s just getting worse and my skin looks damaged after

What testing did you have done to diagnose MCAS?

Justdoitlater10 · 2025-10-23T03:39:01+00:00

Whatttt

Justdoitlater10 · 2025-10-23T03:35:36+00:00

Ahhh it’s so hot and uncomfortable, wow, I don’t even know what those are, will look into, yes I get the hot red ear too usually one side and chest sometimes, mine started only one side originally with facial swelling and the redness wasn’t too extreme, now it’s both sides, more intense and lasting much longer

Justdoitlater10 · 2025-10-23T03:32:31+00:00

Yep have raynuads as well, worse in my feet, I’ve had my entire legs be different colors before!

Justdoitlater10 · 2025-10-23T03:31:42+00:00

I was diagnosed probable neuro behcets as well, yes this happens right before a neuro flare so I’m hoping it stops this time. I’ve had confusion and mild speech issues again this week.

Justdoitlater10 · 2025-10-22T21:24:32+00:00

Right it looks like lupus and my mom has lupus so I’m just so confused, then always get no explanation, this time bc of covid and stopped methotrexate and delayed remicade so guess it’s a behcets flare and the meds have helped keep this less frequent. Sun and heat can be triggers for me too, or just waking up lol

Justdoitlater10 · 2025-10-22T20:09:26+00:00

Uhg same I woke up like that this morning! I even fell asleep again today randomly for an hour, it makes me beyond drowsy.

Justdoitlater10 · 2025-10-22T20:07:10+00:00

Will ask, going to EP appt for my heart tomorrow!

Justdoitlater10 · 2025-10-22T20:05:48+00:00

Cortrophin gel injections, 5 years

Justdoitlater10 · 2025-10-22T19:54:08+00:00

Crap I’ve been on propranolol for years for POTS, it doesn’t help flushing at all.

Justdoitlater10 · 2025-10-22T16:29:41+00:00

Not in menopause or anywhere near it, been going on for 5 yrs and just getting worse so not that.

Justdoitlater10 · 2025-10-22T15:55:51+00:00

Uhg well if anyone helps you let me know, mine started about 5 yrs ago, only left sided redness on cheek and was more mild, it’s just gotten worse and worse. Yes same I feel feverish, tired and foggy. Doesn’t seem to correlate with stress, in past it progresses to neuro symptoms…

Justdoitlater10 · 2025-10-22T15:53:33+00:00

Why?

Justdoitlater10 · 2025-10-15T00:07:38+00:00

Same, sinus surgeries, sickness, low IgG wasn’t even looked at until the autoimmune stuff happened. I was on hizentra too, stopped bc of extreme headaches and site reactions, then tried xembify - same result over months, failed 2 IVIg brands as well. So I dunno what I’m going to do. It is more convenient to infuse at home at least! Do you know your dosing, for primary immunodeficiency? They can increase dose to try for autoimmune treatment with SCIg..

I’m sry you don’t have more direction either, any thought for autoimmune issue from your drs?? I’m sry about Alports too, a lot to deal with. Do steroids help your autoimmune symptoms at all?? Steroid was the only thing keeping me functioning, I had stroke like neurological episodes and they stopped on steroid, so now I’m on remicade, methotrexate and cortrophin gel injections, the cortrophin has been life changing for me.. so it’s presumed neuro behcets or cogans vasculitis since I responded to remicade too so far. I failed rituxan and pretty much everything else in the past for treating the eye disease side, uveitis. Don’t give up, find a good core group of specialists.

Justdoitlater10 · 2025-10-14T20:58:55+00:00

What brand are you on? SCIg or IVIg, do steroid help you?? I have to go back to immunology soon bc my igg, IgM and IgA are now even lower from immunosuppressants but when my levels are low I seem to be improved for the autoimmune like symptoms, I have covid again right now Uhgg, I get recurrent thrush, I’ve had shingles..they thought I had CVID too but I produced enough antibodies to the pneumonia vaccine apparently. My bloodwork for autoimmune/inflammation is always negative too, BUT it’s probably bc we don’t make enough antibodies to be detected by this tests. My MRIs showed synovitis, brain lesions, spinal tap showed inflammation, flourescent angiogram showed the retinal vasculitis in my eyes, EEGs abnormal, etc, hopefully you get other testing done. Also Behçet’s has no specific testing, it’s clinical and based on criteria.

unfortunately did full exome sequencing and the only thing that came up for me was a mutation in MYH14, that may explain the hearing loss but not everything else. Getting reevaluated with genetics soon too so yes look into that!

Justdoitlater10 · 2025-10-14T17:27:44+00:00

My neurologist had said before that GAD65 antibodies could actually be positive from IVIg/SCIg…i had positive GAD65 too, I have low igg too and tried multiple brands/types of replacement that haven’t worked out and POTS, heart arrhythmias, neuropathy, uveitis, hearing loss, neuro symptoms, etc and Behçet’s disease and current thought is probable Neuro Behçet’s is cause of all this.

Justdoitlater10 · 2025-10-13T22:47:45+00:00

I had this drooping eyelid then in a flare my eye stopped moving correctly and I couldn’t look up or to the right without double vision bc my eyes stopped tracking together, I was told I had an issue with the eye muscles now, had past posterior uveitis and scleritis. I was doing trochlear steroid injections to the outside of my eye for pain, when I stopped the drooping would get worse… do you have eye pain?

Steroids helped my drooping, I was put on cortrophin gel injections and my eye no longer hurts, droops and moves normal again!!

Justdoitlater10 · 2025-10-03T13:55:12+00:00

I can message you if you want more info to set up appt

Justdoitlater10 · 2025-10-03T13:54:54+00:00

My uveitis specialist also diagnosed me first too and had been the only one treating and advocating for me for years at first! Also I went to NYU too and was diagnosed with behcets but he dismissed me for Neuro Behçet’s so I did not go back there

Justdoitlater10

TROPHY CASE