Hi everyone, just stopping in and also to show off my new shirt which I had to get as soon as I saw it! Got to have a good sense of humour through all of this haven’t you?
I’ve still been reading posts on here and keeping up with the community.
Still going through intermittent flares. Last week I had 9 mouth ulcers and 2 nasal, gastric issues, pain…. You know the drill.
No medic (GP or rheum) wants to start any meds on me until I’ve been seen by behcets centre and that isn’t until March so I’m stuck in limbo or so it feels. Partly extremely nervous and dreading every moment of being seen at the behcets centre but partly also really looking forward to it?
Aside from that, people at work are still extremely supportive and I’m so grateful for that.
How is everyone else doing? I’m just going to carry on biding my time until I’m seen somewhere that can hopefully help me 😂
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TeaandToast94
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Thank you! I certainly feel like trying to be positive is one of the only solutions right now, it would be all too easy to get bogged down with how I feel and how long the wait is etc… so just have to keep going for now.Thank you! X
I never had ear spots (I don’t recall!) just loads and loads of mouth ulcers (all 9 went - and now I have 3 new ones, cannot shake this off) and nasal sores which can be anywhere. Trying to self manage until I can be seen by the centre.
Absolutely, I also get migraines and they are awful. Thankfully I get them either with aura or some sort of warning stage so I know roughly when they’re going to start
What a fabulous shirt!!! I am sorry that you are suffering with the mouth and nasal ulcers. Sorry if I have asked this before but have you tried the three in one mouthwash? ( soluble prednisalone, soluble antibiotic, and Nystatin). It certainly eases things for me and they heal quicker. Xxx
Thank you! I’m not sure I’ve ever had that prescribed, my GP doesnt really seem to understand the extent of the situation I don’t think. You tell them you get multiple mouth ulcers at a time and I’m lucky to get an “oh dear, that must be really tough” - yes it is when eating anything is agony and I feel like I can’t even talk. I’m holding out so much hope for March that I will meet doctors who go “we understand; this is what you need” and I leave going in to my happy ever after with prescription meds. 😂😂 not sure what the likelihood of that is, but a girl can dream!
Try to push for your GP to prescribe the mouthwash. It will not do you harm as steroids can do as you are not swallowing just rinsing. I hope you get your appointment and a decent Rheumy xxx
I may do an e-consult with my GP then Cec, and specifically ask for what you have recommended. I am sick of this much pain with mouth ulcers which also just make me feel disgusting in myself. I’ll keep you posted. Hope you are doing well lovely, sending virtual hugs xx
Yes do that. The meds you need are Prednisolone 5 mg soluble tablets, Vibramycin 100 mg dispensable antibiotics, and Nystan 30 ml oral suspension. Good luck lovely. Having pain in your mouth is miserable. I get them on and under my tongue too. Xxx
MY 8 year old granddaughter has a ‘hoodie” with the slogan ‘ nothing to wear ‘ on the front, it’s so funny as she has more clothes than me!
You have to wait until March to get help with your obvious problems!! That's not acceptable under any circumstance, I'm sending prayers 🙏 ❤ and hugs 🤗 to you and hopefully you will be seen sooner. Take care
Tha5s realky tough tea and toast having to wait so long to be seen at Behcet's centre. Your life is so on hold with that never mind this pandemic.Could you get yourself on a cancellation list to hopefully bring your appt forward.?.
Ive done this to good effect and been successful.
Keep safe and well as poss. Love the top. Oh boy,cwe certainly do need a sense of humour to help us thru. Xx🤞💕🤞💕
Thank you Misty, I’ve definitely considered pushing for a cancellation - but things have actually worked out quite well in terms of getting time for this appointment, my manager has given me the Friday of it off and the weekend after, and then I coincidentally have a weeks leave after that. So I essentially have 10 days or so off after my appointment to feel rubbish and to try new meds (if I get some at least).Yes, definitely need some sort of sense of humour. Have to admit I have been struggling hugely the past couple of weeks but hopefully getting there now.
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