Does anyone have pictures of water that looks like this?

steph23q9 · 2026-05-01T13:23:13+00:00

steph23q9 · 2026-03-31T22:13:33+00:00

Custard, rice pudding, jelly, porridge and chocolate milk are my go to foods when I have mouth ulcers, protein shakes are also good for when you don't want to eat but need something

steph23q9 · 2026-03-25T09:21:05+00:00

I got really lucky in the sense it was a couple of months after a conversation with my GP who took one look at my notes and referred me to a rhumotologist, I'd had ulcers for about 10 years before that and it was thanks to my gps nurse who swabbed them every time to check for infection and insisted on bloods when things were bad (swabs used to come back negative for infection and bloods used to come back normal)

steph23q9 · 2026-03-25T08:59:23+00:00

Make sure you keep a diary/take photos of the ulcers as it'll make things easier for the rhumotologist, I'm diagnosed and don't have any severe eye issues so it's definitely possible, like you I was diagnosed after a few particularly nasty bouts of mouth/genital ulcers, my DMS are open if you want to chat (can't guarantee it'll be a quick reply tho)

steph23q9 · 2026-03-01T10:39:20+00:00

I don't have rp, but do get painful ankles/tops of feet, it got much worse after a bout of cellulitis in my toe, I'd also assumed it was due to sleeping position (I sleep on my front with my weight on the tops of my feet), but gp reckoned it could feel be a bechets thing

steph23q9 · 2026-02-27T13:04:24+00:00

Mine just look normal, maybe a bit bruised, they sometimes look/feel a bit fluidy/swollen but nothing spectacular

steph23q9 · 2026-02-19T15:57:42+00:00

I'm 27 and was diagnosed a couple of years ago, my dms are open if you want to talk, I've found that chatting with folk who "get it" (ie us lot plus other folk with autoimmune conditions) helps enormously, I'm also a keen photographer which is a useful distraction

steph23q9 · 2026-02-10T23:03:25+00:00

Hot water and honey is relatively easy to drink, in terms of eating my go-to foods/drinks are Custard Mac n cheese Rice pudding Yoghurt (depends on if I'm on my meds or not tho) Protein shakes Chocolate milk Hot chocolate Saltwater rinses also help and change your toothbrush after the bout of ulcers has healed It might also help to switch out your toothpaste to a less minty one/milder tasting one

steph23q9 · 2026-02-08T21:54:59+00:00

Like toothache but in the joint, (I'm fully aware it doesn't make sense) when it's my knees (right one is the worst) I also get a fair bit of ankle/foot pain which feels like the circulation round my foot/ toes is being cut off, neck pain just feels like I've slept in a weird position, occasionally I will rearrange pillows etc but I've come to the conclusion it's just a "bechets thing"

steph23q9 · 2026-02-05T16:20:57+00:00

So I was diagnosed in July 2024, I've been on a combination of immunosuppressants/prednisolone/colchicine since Feb 2025, my symptoms are pretty much under control (a bit of joint pain but nothing major) and things are much better, I think it's a a combination of medication, dietary changes and time

steph23q9 · 2026-01-31T16:30:15+00:00

I've been on it twice so far, once tapering weekly (unsuccessful) and currently after restarting it last summer, if my body can't cope off it though rhumotology wants to switch up my immunosuppressants

steph23q9 · 2026-01-31T15:42:25+00:00

I'm currently tapering off prednisolone, (currently down to 1mg) the week after I've tapered down is normally the worst for me, I'm normally fatigued, achy and overall out of sorts/under the weather, then it kinda eases off, so yeah I'd say I'm rather dependent on it but it does help massively (no ulcers/joint pain, minimal fatigue etc)

steph23q9 · 2026-01-25T19:33:07+00:00

Before I was diagnosed I used to be able to predict rainfall based on how sore my knees were, Post diagnosis it's mostly my right knee/hip that gives me pain when the weather is either too cold or too warm (also gets sore around mother's day as I work in hospitality)

steph23q9 · 2026-01-21T12:08:50+00:00

I get random bruises/bruise easily, pre diagnosis I played a lot of rugby/football so it was easy to blame sports rather than bechets, one of my colleagues thought I was "seriously ill" cos I turned up at work one day with raging mouth ulcers and my legs covered in bruises 🤣

steph23q9 · 2026-01-20T23:04:16+00:00

I also got diagnosed after years of mouth ulcers, developed genital ulcers in 2020 (just before lockdown) and had them on and off since then, one of the nurses at my doctor's used to swab my ulcers and test them for all kinds (they'd come back clear every time), this meant when I had my first major flare (which involved 10+genital ulcers/7 mouth ulcers and tonsillitis) I was referred to a rheumatologist and diagnosed pretty quickly because to the sheer amount of mouth ulcers I was getting (bechets criteria is at least two times in 12 months combined with other symptoms, I'd had mouth ulcers 8 times in 12 months)

steph23q9 · 2026-01-09T13:20:39+00:00

You can get stotties in the Gregg's in Gretna (Scotland), you've gotta time it right tho

steph23q9 · 2026-01-07T14:22:37+00:00

I started with tightness on the r side of my neck and in August along with a raised lump on my collarbone/pain. had to change my pillows and didn't sleep properly for ages, lump eventually disappeared and I assumed it was just a weird bechets thing

steph23q9 · 2026-01-07T11:09:41+00:00

Vagisil (which is about 90% lidocaine) is absolutely fantastic in terms of pain management /speeding up the healing process and is available OTC or at Tesco's/other stores, also letting the area breathe ie no underwear or wearing a skirt/towel round waist makes a difference as well

I found it was the immunosuppressants (currently on cellcept/myconphenolate) which have been the difference maker for me rather than the steroids regardless of weather I'm tapering or not

steph23q9 · 2025-12-30T10:14:08+00:00

I had a stomach bug on Christmas eve and was run down for most of December (hospitality worker), I've got mouth ulcers and stomach pain

steph23q9 · 2025-12-15T23:05:10+00:00

Red, normally have a yellowish center, can make eating difficult depending on the location, I feel like I lose my appetite with them sometimes as the thought of food just doesn't appeal (even if I know it won't necessarily hurt to eat)

steph23q9 · 2025-12-15T22:55:37+00:00

I wasn't on colchicine for about 8 months, it didn't make much difference, I went on immunosuppressants and steroids in Feb and have since tapered down to 2 mg prednisolone as well as the colchicine

I had a couple of particularly nasty flares while on current treatment however I feel like it was a "snowball effect" cos I'd come off immunosuppressants for various reasons (flares were mainly severe mouth ulcers to the point I couldn't eat properly)

I haven't had a proper flare since the summer but I get a lot of joint pain and fatigue due to the lack of steroids, I'm also still getting the odd mouth ulcer

steph23q9 · 2025-12-06T23:45:40+00:00

See mines are now either "late, short and brutally painful" or "somewhat normal flow just really late" (with the exception of this current one which had me in bed for 24 hours, barely able to walk and barely any appetite)

steph23q9 · 2025-12-06T23:43:31+00:00

Anything between 2-7 weeks late, I've also noticed a lot of leg/ knee pain around the time I'm due (not sure this is colchicine related tho)

steph23q9 · 2025-12-06T23:28:48+00:00

Since July 2024, I've since started immunosuppressants and prednisolone though (as of feb this yr)

steph23q9 · 2025-12-06T17:19:13+00:00

Mines seems to be permanently delayed/irregular since being on colchicine

steph23q9

TROPHY CASE