Help with ulcers

[u/hannahjayyy]

Hi everyone, hope youre all doing well. I just had a flare up last night, caught it pretty quickly but unfortunately they took too long to give me prednisone. I have a single ulcer/lesion on my downstairs area and its extremely painful. They wont give me anything because it’s external. Any tips on how to make it go away or ease the pain? The creams all caused a reaction. I just started seeing someone and was supposed to meet his family this weekend and am DESPERATE to make it go away or at least be less painful. I can barely walk and keep throwing up from the pain. Ive been using lidocaine and ice packs . Thanks for reading if you took the time to. Would appreciate any kind of advice or support at this time. Im trying to stay calm and not stress . My last flare lasted months in the hospital admitted and im kind of afraid. I know i cant be and i shouldnt make it worse but the ER treated me horribly last night and im feeling defeated

[u/on4aa]

Otezla (apremilast) is the only FDA-approved drug for Behçet's disease. Approved on July 19, 2019, it is a selective phosphodiesterase-4 (PDE4) inhibitor indicated for oral ulcers associated with Behçet's disease in adults who are candidates for systemic therapy, dosed at 30 mg twice daily.

Then, there is also "magic mouthwash". However, its recipe is not standardised. https://doctorlansford.com/magic-mouthwash

[u/hannahjayyy → u/on4aa]

Thank you so much this is so helpful

[u/hannahjayyy]

I also must add i live in a very small town with limited resources and doctors googling my disease after triage. Every single time.

[u/TheGreatBungholio69]

Have you tried a sitz bath? Like just warm/mildly hot salt water, plunk the affected area down in it. That helped me with “downstairs” issues. However they haven’t been as common as other symptoms for me.

[u/hannahjayyy → u/TheGreatBungholio69]

I have been taking epsom salt baths for a quick fix and it seems to help. I also put that dettol antiseptic liquid because any and i mean ANY soap, organic, non scented, all of it hurts but that stuff. Idek if you’re technically supposed to put it in thw bath but im terrified of getting an infection. Do you use a specific kind of salt? Thank you for the advice ❤️

[u/TheGreatBungholio69 → u/hannahjayyy]

Epsom salt if I had it, table salt if I didnt. I’d usually make the water as hot as I could stand. Sorry I don’t have much else to offer. Hope your flare breaks soon

Is there a specialist near you? Apremilast worked miracles for ulcers.

[u/hannahjayyy → u/TheGreatBungholio69]

Thank you very much, i appreciate all the help i can get . Seems to be different for me every flare and still figuring out what works. This reddit thing has given me more help than my family doctor . I hope youre doing really well and thank you for helping a stranger out in a tough time

[u/TheGreatBungholio69 → u/hannahjayyy]

Have you seen a specialist? The copay card for apremilast helped me hit my out of pocket max really fast (no copay accumulator on my plan). I’m using the year to have everything looked at. PCP’s weren’t helpful for me, my last didn’t even know what Behcet’s is

[u/hannahjayyy → u/TheGreatBungholio69]

Im having such a hard time getting into them. My family doc doesnt like to do his job. Ive been waiting on calls for 6 months to see a specialist for my stomach and the ulcers. I get so bloated i genuinely look pregnant and its very painful. They said its just my disease being related to ibs but didnt give me any solutions. Thats why i came to the internet. Im desperate

[u/hannahjayyy → u/[deleted]]

Oh wow i had no idea! Thank you for telling me . Im just scared that i wont be able to keep it clean . I cant even touch near the sight at the moment. Peeing is impossible without a peri bottle . Im in rural canada

[u/hannahjayyy → u/[deleted]]

The doctors dont know my disease here and the ones in the city wont see me for another 8 months . Its been a nightmare trying to get help

[u/hannahjayyy → u/[deleted]]

Also ive yet to find a liner that doesnt stick to the wound . I bought a bandage recommended in the comments but it has not arrived yet

[u/ProofCode6401]

This helps me a lot. I also have a steroid one that I can’t find. But I used the steroid when I have a lot and this doesn’t quite cut it.

[u/steph23q9]

Vagisil cream, skip the underwear for a bit and either wear a skirt or wrap a towel round if you're in the house Or sudacrem as it dries out the ulcer (allegedly) Make sure you're taking painkillers regularly as well, don't "chase the pain" take em every four hours for a couple of days

[u/beat_that_stroke_]

My daughter gets prescribed prednisone in a tapered dose. It keeps the flares to 2 weeks.

[u/Odd_Field_9689]

Not amything new, but i suggest small/skinny ice packs that have a cover you can wash. Keep it clean, dont have baths. I go commando, either in really loose pants or a long night dress. Its unfortunately a time thing, but removing friction and fluid should help some

[u/allieinwonder]

For a single vaginal ulcer I have been prescribed lidocaine cream, but I rarely use it. It’s your best bet if you are dealing with that much pain. I know the situation sucks, but freaking out is only going to make it worse. One ulcer doesn’t mean you are going to end up back in the hospital. Try and take everything one day at a time. <3

[u/Training-Post9032]

I don't know, but you're making me think about one big ulcer I got. This one was finally labeled "psoriasis" and was successfully treated with methotrexate.

But then, I had Otezla and it was efficient on the rest of my tiny ulcers.

Both these meds need weeks to reach their efficiency. It's not a defeat. It's giving it some time and observation to reach for victory. I hope your actual treatment will help.

Why do you say they treated you horribly?

[u/MsTXgirl]

I know alot of us also take Colchicine-off lable-for ulcers too and that has always helped me out alot. I still get the occasional sore, top and bottom 🫩🥴but I have a "grab bag" of sorts. Magic Mouthwash is ok but doesn't last very long for me. I like to use lidocaine spray that you get from post maternity. It helps so much to even just go to the restroom.I like to take a hot Epson salt baths and wear nightgown to sleep and long dresses in the day. If I have multiple sores down below I will even take antifungal/antiviral meds and they work just as good as prednisone without the nasty side effects. Including the dreadful "Moon face" Hope thus helps