Mouth Ulcer 101 – Warning contains picture of ulcers

Everything you need to know about mouth ulcers! Well 11 tips as I don’t think I could write 101!

When I get mouth ulcers, which is a permanent thing, they are epic. They range from blisters and painful lumps to open bleeding sores. As well as coating my mouth in every part I also get them as sores in my eyes and nose and elsewhere. I regularly get them on my lips on the outside and these take forever to heal and bleed due to cracking. My record is 27 that I can count on one go. They are a big signifier that lupus is active. My taste completely changes when I have them and I feel constantly dehydrated. Sometimes when they are in my throat it swells and seems to affect my hearing and gives me earache. Just to really help with the humiliation I’ve added some funny photos for you to look at 🙂


So as a bit of an expert I want to share what works for me and hope you share your tips back.

1) Keep hydrated. If you can’t eat you need to keep you fluids up. Ice lollies and also great for this.
2) Difflam is the only form of pain relief that works for me. The amount of times I’ve been asked if I’ve tried bongela is a joke. For one maybe but for chronic and extreme ulcers nothing works like Difflam. The mouth wash is best as you can get it everywhere with a swish and a gargle. It is pricey at around £12 a bottle so get it on prescription if you can. I also steer clear of corsodyl as I find the benefits don’t outweigh the stained teeth and ruined taste buds.

3) Everyone has a home remedy including salt or vinegar. Argggghhhhhh the thought. For years I haven’t been able to eat walkers salt and vinegar crisps. Just the thought of eating them makes my mouth blister. I’m sure these remedies may work for some but I’m in enough pain as it is thank you!

4) Talking of foods stay well away from sugar. It always seems that when I’ve binged on the stuff the ulcers quickly follow. As yet I’m not sure if it’s aggravating the skin of my mouth or triggering lupus. But trust me, stay clear.

5) Whenever I’ve brushed my teeth in front of someone they always comment on how little toothpaste I use. This is because it literally burns my mouth and it erupts in blisters. I few years ago whilst on a visit to maxillo facial, I was told by a consultant that lauryl sodium sulfate (essentially soap and the thing that makes toothpaste foam) is considered a trigger. Look for a kinder toothpaste. I now only use an American brand called squiggle. It can be found here.

6) Keep up with forums, advise and other websites. Generally people who experience these things are the best experts.I quite like and they have a shop.

7) Avoid acidic foods they burn, burn, burn

8) Rest, they are a sign that somethings not quite right whether run down or stressed, try and take it easy.

9) Medication. Hmmm so this is a tricky one. I’ve probably had every type of meds over the years and not many really work.  There was a time when you could get little pink steroid tablets that dissolve in water and are used as a mouth wash, but they seem to have disappeared. The only time I am clear is when taking Prednisolone in high doses, maybe this is because it also controls the lupus. When I was on Methotrexate for Lupus it also causes them so I took a lot of folic acid and vitamin B which seems to ease it.

10) Embrace the pout. This photo was taken in a huge flare up and with mega ulcers. I had to grin and bear it as I was Bridesmaid at my Best-friend’s. A bit of very carefully applied lippy meant I had a super pout for free!

11) Let people know and ask for help. Yes mouth ulcers are not life threatening but they can be excruciating and debilitating. You may not be able to speak properly or for long without pain, and phone calls are impossible. Let them know about foods too.

So there it is, I hope this advice can help someone somewhere xx

If I had a pound for every hospital visit I’d be rich

Honestly I would. It’s a full time job managing all the appointments. Let alone remembering all the forms and meds. Then there’s the checking up when it goes wrong. 

Today’s were back to back. An MRI scan at 7.10pm on a Sunday (I was shocked by this one) followed by a procedure with gastroenterology today. I forgot details both times and got berated by the nurses. I understand they’ve provided me with all of the details in the reams of paper, handouts and leaflets but sometimes I get muddled up. 
This time the MRI was a 45 minute car drive, followed by getting lost in the hospital and an argument. We arrived on time at 7.10pm for the appointment to be told I should have been there at 7 and be early for my appointment. Oops. Then when I mentioned they’d overlapped procedures and I was supposed to be drinking moviprep at 7pm and would I get out quick I had my head bitten off. Maybe the nurse had had a tough day, I get it but I also am anxious about procedures and not exactly having a ball! As the nurse put my headphones on I couldn’t stop tears leaking from my face. I lay in the ‘rave cave’ with magnetic hammers banging, ugly pop tunes funnelled into my ears, watching the strange led lights change colour and sobbed. I full on let out some of the built up pain all whilst staying absolutely still in case I messed up a picture.
Then today I was on the other side, a bmi hospital (referred through the Nhs) no medical insurance would touch me. I can’t fault their service and tacky hotel style private rooms. I guess you get what you pay for and the staff are less hassled.

So it turns out my knee is now considered ‘urgent’ I was referred back in May for a botched operation last November. Full of fluid after a full sinovectomy  and a completely displaced knee cap. The bones in the joint are showing trauma and are bruised. For someone who apparently has lupus ‘under control’ it’s sure is playing up. On the up it looks like the other problems are just a lot of ibs.
I’m sure this is fascinating for all!