Some time ago, while taking Leflunomide, one of the side effects I suffered was severe mouth ulcers. The ulcers lead to lesions on my gums that broke through to bone. I had just been referred to to FacialMaxillory consultant, then Covid happened. I have a dental plate that covers the holes. At no time did the consultant suggest that I should stop wearing the plate.
18 months on and the lesions are still there. Despite being extra careful with oral hygiene and using mouth washes every time I eat or drink, I had been getting mild, localised infections in them. I went to see a different dentist last week... He told me to stop wearing the plate until the lesions healed. It makes sense, I know, but vanity had prevented me from acknowledging it for myself.
3 days into not wearing the dental plate, not seeing anyone or speaking much, and the things are healing, slowly.
When the ulcers appeared in the first instance they quickly become really, really painful, but at the same time I had really bad RA symptoms and horrid side effects from the medication. I should have seen someone about the ulcers, instead I neglected them while trying to deal with everything else.
The lessons learned - never ignore ulcers. - Vanity vs Health, health first every time.
Go gently out there, but enjoy the good weather
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Brushwork
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Leflunomide, wish I'd listened to my GP, she warned me of the drug's toxicity which delayed me starting it for 6months, which upset my Rheumy consultant.Came off it after 9 months due to extreme photosensitivity. Years on the side effect persists. Skin on my face flares red, swollen n painful. It's impossible to not go outside. I wear sun cream if skin not too sore and a sun hat always outside.
Thankfully the hair lose reversed slowly after stopping it.
Psychologically though, it has made me very wary of any new meds. I think I really wanted some acknowledgement from my consultant about this long-term damage and life limiting side affect but he seemed indifferent. I have settled on rituximab for the last 12 years or so, thankfully this dampens symptoms, I leave it at that.
I hope your mouth ulcers heal and don't reoccur. Good luck.
A sore mouth is really debilitating, I hope the ulcers heal soon for you. Nothing like you have experienced, my mouth ulcers have always been superficial but sore all the same.
I haven't been wearing my plate in hospital, I was working on the principle if the nurses were seeing my bahookie then it was ok to let them see me without my teeth 😖🥴😬.
I get oral ulcers frequently from whatever bad body behavior they have yet to place blame on for this particular symptom. But, when it flares up badly, I use something called “Magic Mouthwash”.
I have mine compounded by my pharmacist for under $9/250ml. While there is no ONE recipe for it, there are consistent ingredients from a list depending on cause (e.g. AI dz or chemo etc.). I don’t know the exact recipe for mine, the ingredients are like recipe #2 in the link below.
I tried lots of different mouth washes. Dr's didn't ever take my mouth ulcers very seriously... Shame on them.Since being on Tocilizumab, mouth ulcers are not a problem. Just need to heal the lesions
Shame on them is right. They haven’t done their homework. Lazy, or, at the very least, uncaring doctors 🥼. More recent (the last 15 years or so) research shows the mouth, especially the gums are a pathway into the bloodstream. It’s not laughing matter.
They talk a good talk about QOL (quality of life) and they have a million questionnaires But it doesn’t even sound like they have gone so far as that with you. Find someone else to provide your care. I shake my head at the apathy that has crept in to the profession.
I apologize for mistakes. Having problems with my eyes. And can’t really see this to correct it. So sorry. At the mercy of my fingers.
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