mouth sores

[Brychni]

Hi all

Just a quick question about mouth sores which, are apparently a feature of lupus. I have had these intermittently on the roof of my mouth for as long as I can remember. I always assumed it was cold sores which I very occasionally get on my lip. But now I'm not sure.

They first come up as small bumps and then seem to crater but don't look like ulcers with the pale yellow centre (which I also get), the area looks a bit red and is EXTREMELY painful. Usually takes a full week to clear up and makes eating really difficult. I've noticed having one crop after another recently.

Sometimes I get one inside my nose but always in the same place, so thought it was to do with the cold and having a runny nose. I have Raynaud's too.

I've just put up with them and never really questioned it until now. Was diagnosed with Inflammatory Arthritis about 3 years ago and also have the blood clotting antibody so take an aspirin every day (when I remember). Have recently discovered that lupus is on my notes. I'm on hydroxychloroquine since diagnosis.

[WinterSwimmer]

has your dentist had a look?

[Brychni in reply to WinterSwimmer]

sorry for late reply... no, but I am thinking the next time I get something I will make an appointment. Recently I have some unexplained bleeding from my mouth. It took ages to find where it was coming from but in the end with several mirrors and torch light from my mobile (!) and pulling my cheeks all over the place I found a slightly sore patch that was running along the very top of the gum where it meets the cheek flesh - so in the groove. It looked like an elongated ulcer, lines of yellow and some redness, not sore at all but every time I touched it with my finger or the toothbrush it bled. That was about 3 weeks ago. I've had more sores since then, in the gums where molars were removed a few years ago. Now I have the sore in my nose again it drives me nuts. It's right by the entrance of the nostril. I also have the naseptin cream, it helps but doesn't really make it go away any quicker.

[MusicalFurbaby]

Hi Brychni, recurrent mouth and nose ulcers are certainly one of the common symptoms for lupus. I get these ulcers, not as painful as yours by the sounds of it, but painful enough for me to struggle to eat/talk sometimes. I take extra care to brush them and they seem to dissipate of their own accord after a day or two.

[Chris21]

your GP or consultant should be able to suggest what to use/take to help. I get them all the time on my lip, inside cheek and roof of mouth. Yes they do blooming hurt! I love fresh baguette and always after eating one, up comes the sores. I’m not sure if it’s because they are too crusty? Other foods like crisps also have the same effect. The outer side (lips) I can’t decide if the weather has an effect. There is a lot of potions that will help but as I said best to check with the doc first to find the root cause.

[SufferingMike21]

HI I have exactly the same , hKept getting nose bleed had to have quaterzoned treatment with worked , also get ulcers in mouth very painful and hard to eat.

I have disolvable steroid mouthwash tablet gargle and rinse round mouth and spit out works great I only use as needed hope this helps Mike

[Whippet_lady]

Hi Brychni, I know exactly what you mean, I think. Not ulcers but extremely tender/sore red patches, particularly in the roof of your mouth but sometimes on your gums too? It's so difficult trying to explain to doctors, rheumies, dermies, dentist etc that they are NOT ulcers. They are flat red patches that can be touched fine with your tongue but put anything else anywhere near them and it's excruciating, to the point you're scared of eating and just don't want to. Trying to eat food without chewing it or letting it touch the roof of your mouth is nigh on impossible. I was swallowing things almost whole.

Anyway, if this IS the same as you're experiencing, I initially took Betamethasone soluble tablets dissolved in a small amount of water and used as a mouthwash for 5 minutes twice a day. It helped a little but increased the sensitivity in my teeth significantly. When I got to the point of crying to an emergency doctor because I just couldn't do it any more she contacted a rheumy (not mine, one with decades of experience) and I was prescribed calcium folinate, which is like folic acid but stronger(?). I'm also taking methotrexate so take taking the calcium folinate every day except the methotrexate day and it is the only thing that has worked. I still have a small slightly raised red/yellow patch on the roof of my mouth but unless I catch it with something sharp or burn it it's not painful and even if I do it gets back to 'normal' quickly afterwards. It's been an absolute godsend!

I hope you can get your GP/rheumy to discuss it and hopefully they will think it's the right thing for you. If prescribed, I hope it works as well for you as it has for me. Good luck!

[Swimwoman]

it’s a lupus thing I’m afraid. Not to do with hydroxychloroquine I just live with it, so no easy answers I’m afraid. I have them for weeks at a time.

[FractalofLight]

Although I'm not a Dr sounds like you have several distinct things going on. Hydroxychloroquine has helped me keep Lupus symptoms at bay. Peroxyl for mouth sores too. Abreva for cold sores.Rest! Your body is always talking to you.

[Wolf_1]

Hi Brychni,

I have had SLE and Fibromyalgia for 25 years and suffered really badly from what I called blood blisters in my mouth and nose every month or so. I personally tried mouthwashes but they made my mouth worse. What I used to do first thing on a morning would be to rinse my mouth out with warm very salty water, then brush teeth, gums etc very carefully, On a night time repeat the process. ( When it was really bad I covered my mouth in Bonjela and when dried sprayed Vicks Chloraseptic to numb my mouth so I could fall asleep!). In the case of the nostrils blood blisters I get a cream off my GP called Noseseptin Nasal Cream which works amazingly!

About Hydroxychloroquine I took this drug ( which primarily is an anti malarial drug and meant to ease the onset of SLE) it didn’t do much for me, I started driving home from work and my eyes would flutter and found myself quiet a pain to live with or should I say more of a pain to live with! On the plus side of this drug, I didn’t get Malaria! But obviously these side effects could only happened to me, but I did stop them after consulting with my GP! I hope I have helped in some small way and wish you all the best health possible,

All my best Wolf_1 🐺🦋😴💤💖

[Cruising2020]

Hi Brechin - so sorry to hear you are in so much pain & discomfort. I absolutely sympathise with you as since my late 20’s (I’m now 71) I’ve had problems with mouth/throat ulcers & various sore patches & bumps. Problems also resulting with teeth & gum disease - literally I’ve spent thousands & thousands over the years with dental treatment. Wind the clock forward & recently had scans for Sjogrens disease, which have returned as negative. Now have appt at Oral dept at the hospital to see if they can help. I’ve tried just about every lotion & potion know to mankind, but nothing helps. At this very moment I have ulcers on my top gum & close to two back crowns & crater-like sores on the roof of my mouth & tongue. I’m in remission and take no medication, having being taken off Hydrox after 20+ years. I use a steroid asthma pump for the ulcers and swim in Bonjela & daily mouthwash. There are no hints I can give you unfortunately, but maybe when I’ve had my hospital appt, I may have a few new ideas. It’s just so uncomfortable having these things in our mout & difficult to explain to anyone who has never had this problem. I do hope you start to get some sort of relief soon. Chin up! Xx

[HowNowWhatNow in reply to Cruising2020]

Did you ever find answers or solutions, following your meeting? I hope so.

[Hidden]

In regards to the nose ulcers! On the first day the developed was it super itchy? Like chicken pocks itchy? I suffer from herpes simplex type 1 (just the mouth) but I’ve never had it in my nose before, it felt exactly like it does when my mouth sores develop however i asked my doc if it was herpes and she straight out said no its inflammation, so i have no idea why i would suddenly get this at the same time I’m being tested for IBD 😫

[Chris21 in reply to Hidden]

I would get sores in my nose (haven’t had one for a long time now) doc gave me some antibiotic cream that helped clear my nose. Once it was clear, I was prescribed a steroid nose spray to help keep the immflamuation down in the lining of my nose, sinsusitis can be another common problem. When I get sores on my lip,I tend to treat them with the same gel as inside my mouth. They look like a cold sore but don’t follow how a cold sore develops, hope that makes sense!