behcets, mouth ulcers and gum disease

[jaquarius]

has anyone here with behcets experienced poor oral health? i found it was never an issue for me until recently, i went to the dentist and she said that i had gingivitis. ive yet to go back as it was a bit traumatic, but has anyone had experience with "poor oral health" being linked to behcets i.e your gums are more likely to be inflamed? i had a really bad flare up a month ago and started to get ulcers around my gums for the first time, so wondering if this could be related, and if having mouth ulcers on my gums makes them more sensitive, swollen and likely to bleed?

[Frogge]

This has happened to me many times, even to the point where I have had to have several gum grafts with one tooth even becoming loose due to the problems. I brush my teeth twice a day and take care of my gums, but this still continues to happen. The periodontist I have seen told me it could be linked to the Behcets.

[012703060610]

Interestingly, my periodontist sent me to rheumatologist for behcet's. now I see a faculty practice at the University of CT. For the past 20 years they have been managing my oral disease. I didn't have a formal diagnosis of Behcet's until mid 2021, but I had life long oral issues. Doesn't matter how well you take care of your teeth, the oral health disease just takes over. I am on new meds that gave me dry mouth. Didn't realize I was sleeping with mouth open. In a matter of 6 months, I had 10 tiny new cavities from mouth breathing. Insanity. I can 100% relate and it's just another thing to deal with. I have to get my front two teeth pulled this summer and bone grafting needs done. Extra pain when you are already dealing with a crazy disease. Hang in there!

[gillianTS in reply to 012703060610]

May I ask what medication you are taking, I ask because I can relate to some of your journey and currently have been advised by my dentist I have gum pockets at 7 and 8mm on 3 teeth, nothing noted 6 months ago, I am horrified... I definitely sleep with my mouth open, I blame the fact I have had to wear a mouth splint for tge last 7 years, apparently I clench my teeth in my sleep. Been through a couple of treatments in the last 5 months and changed Behcet's medication.

Thanks.

[012703060610 in reply to gillianTS]

For my teeth and prevention of further decay, I use a dry mouth rinse three 3x a day, brush three times, water pik 3x and end with a layer of something called gelkam (no other product like it I guess). This has helped further decay and doesn't work if you are in an oral flare. I have relapsing polychondritis and behcets disease. To control both I am on a weekly methotrexate injection of 25 mgs; unfortunately my liver enzymes are coming back bad and we may need to switch things up. I have yet to get anything in to remission.

[gillianTS in reply to 012703060610]

Thank you for your reply and all about your routine, it is very interesting. I had not heard of a dry mouth mouthwash and will certainly look at trying this and never used a water pik. I must sleep with my mouth open, and I have started to put a tissue on my pillow since I have been dribbling in my sleep... seriously I have been thinking what is going on. I had been using soluble Prednisolone quite a lot over the last few months, I had never been advised to rinse my mouth 30 minutes afterwards with water and I have happily been going to bed straight after use thinking this was good. Also just read the medication I use for Behcet's Otzela/Apremilast can cause dry mouth in some, and was recently on a long trial of Rifaximin with a view a curing possible Sibo. My tongue at the end and roof of my mouth were the tongue rests feels constantly as if I have burnt it with scalding hot soup. I have not heard of polychondritis how does this affect you. I have Behcet's diagnosis along with Ehlers Danlos and also Costochondritis along with other bits and pieces which are all related to these. Thanks again it has been very helpful.

[012703060610]

OMG. SIBO is the worst. I have read about 30% of Behcet's patients get this and I do too. I also take the Rifaximin course and it is painful for a few days but does clear it up. I also suffer from a paralyzed stomach called gastroparesis which I just night mare. Need meds to make it move and digest food, but the meds have side effects that don't go away if you take too much. I don't have Ehlers Danlos but am considered extremely hyper mobile. That was my first diagnosis actually, then came Behcet's and then came RP.

Relapsing Polychondritis attacks cartilage anywhere in the body. Sort of like oral sores with Behcet's, the hallmark symptom of RP is a an extremely red ear pinna. So the outer ear and not down to the lobe. Eventually ears and noses collapse. I've already lost the middle of my nose totally. I have involvement in my airway and that is primarily how RP patients die-choking or inability to breathe. I haven't been able to put anything into remission except on high dose prednisone...which I guess isn't remission. The only med that will shut it all is prednisone. However, I was on a high dose for about 3 months and did not sleep. I didn't even understand what sleep deprivation could look like honestly. I was blessed for my kids to not see me on prednisone. I was WAY up with my massive morning dose cleaning or organizing like a maniac, then come down in the afternoon to sobbing tears. It took me a year to wean off of prednisone due to the effects it has on me. I then couldn't sleep as I developed a fear of missing my prednisone dose and knew if I did the lack of cortisol would send me to hospital. So I just didn't sleep and was setting 5 alarms at once. Looking back at it, wow, I was some kind of crazy and can laugh a bit. However living it was pure insanity. I recently did a short course to calm a flare and even then, I struggled to come off.

Biotene is the name brand of the dry mouth rinse, but now everyone makes it generic. My oldest daughter is just a mouth breather and the wash helps her quite a bit too. So many meds mess us up and when med after med gets added, we don't know which ones cause the brutal side effects.

Costochondritis seems like a subset of RP focused on the ribs. I have a little activity there too as well. Crazy how all of these things overlap!?!

[gillianTS in reply to 012703060610]

Sorry for the late reply. I find everything you have said very interesting. Our bodies are so complex, it really is hard to pinpoint just what symptoms belong to which condition sometimes, and then you see another consultant and they pin another label on you... the overlapping is amazing. My consultant for Behcet's is going to refer me to oral and maxillofacial and says they have direct access to the dental hospital in the same grounds, so I am hopeful of getting some advice at the very least. My dentist and hygienist has no knowledge of Behcet's and I think just do not understand enough about the effects on oral health and drugs that might cause a problem. I questioned the fact the pockets not being reported 6 months ago and now stating the need for me to see a periodontal specialist, and my asking if my oral hygiene was an issue, all of which they cannot give concrete answers, only saying that I clean my teeth well but can I start using one of the single tufted brushes on and under the gumline where the pockets have been identified. I have started doing this twice a day but I do wonder if this is going to make things worse, me trying to go below the gumline. The hygienist kind of thinks this will improve the pockets... Anyway, I am grateful for all your advice and sharing your experiences. Thanks 😊

[Minnskimoo]

Hi jaquarius.

Sorry you’re having these horrid problems- such a nuisance and a pain- literally!

I get a sore tongue, dry mouth, ulcers and sometimes puffy gums. I wake at night with my tongue stuck to the roof of mouth and need a jug of water on the bedside table to constantly sip water to be able to swallow. I am a mouth breather at night so doesn’t help the cause . The ulcers and swollen tongue , sore mouth were my first symptoms.

I have been prescribed a whole plethora of medications for oral manifestations. This was from my rheumatology visit.

I have bioXtra mouth gel, and toothpaste they both contain xylitol which helps to promote saliva which is needed to keep the mouth healthy. Salivix pastilles to suck for daily dryness ( sugar free) and when the big ulcers flare, I have Flixonase nasules ( these are normally for problems with the nose) which are steroid drops , diluted and used as a mouth rinse . They reduce the healing time by about 2-3 days . These were prescribed by the oral consultant- who is part of the Behçet’s clinic I visit . Brushing and using interdendtal brushes x 2 daily at least is a must . Although, not something I enjoy, chewing gum containing xylitol also helps to keep the mouth lubricated and promote a healthier oral environment .

Hopefully, you will receive more help and advice as to how best manage these recent changes when you next visit your dentist .

Good luck x

[gillianTS in reply to Minnskimoo]

Very interesting, thank you for sharing your experiences and especially what medications you have received, it is good to hear about this because I can now include this in my discussions with the consultants.

[Minnskimoo in reply to gillianTS]

Hi gillianTS

Pleased that this may be of some help to you. 🙌🏼

It has taken many visits before being prescribed anything other than the usual suggestions, Bonjela, Difflam or steroid buccal tablets- which were ok to a point - depends on where the ulcers are situated (trying to keep one on top of said ulcer/ulcers practically impossible) . These new medications do help to a degree.

Sadly, the teeth, gums and overall mouth health have taken a beating and needing more dental treatment because of this. What a job.

Hoping you are able to get the help you need too at your next appointment. Anything that relieves these horrid symptoms is always a bonus.

The very best of luck x 💐

[jaquarius in reply to Minnskimoo]

this is so helpful thank you, i think i am being referred to an oral health specialist, i will bring up dry mouth with them too as i experience this a lot when i am going through a particularly bad flare

[Minnskimoo in reply to jaquarius]

Hi Jaquarius .

Pleased you’re able to take something from this . Good luck with the oral health specialist. Anything that relieves the painful symptoms is a bonus.

Best of wishes to you x 💐