wishing you all relief from the pain, courage and understanding and grace from God. This illness can really be tough!!! I have a Behcets diagnosis with extreme mouth ulcerations of some kind that now has progressed to the top of my head. I've lost all my hair in the middle, ( kinda like George Jefferson for those old enough like me to get the reference LoL ) and that section of my head is covered in raw sores and scabs. Just doesn't want to heal. 2nd biopsy results back this Thursday. I'm on Prednisone, Azathioprine and Colchicine with some relief for my mouth but my head is on fire. My question for anyone out there is I have been finding more information on linking some Behcets symptoms to Root canal and other low grade dental infections. Does anyone else have experience in this area? Also, any suggestions for pain relief from my head without taking too many NSAID's would be wonderful.
God bless you all.
I pray for you every day.
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RaceBannon
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Hi, I really feel for you. Compare to you my attack was quite mild but I did have blisters on the head at one stage. I found a liquid prednisone helped keep it in check. Yes I definitely have had trouble with my teeth and root canal problems, I have always thought it was something to do with the inflammation of the blood vessels and attached nerves. Unfortunately in Australia dentists haven’t actually caught on to the connection between Behçet’s and dental problems, and I usually get a lecture on better dental care. If you are in the UK perhaps one of the Centres of Excellence might have a clinic.
thanks so much for your input. I'm in the US and working with a dermatologist and a Rhumatologist but progress is slow. People like you are a gift with your input and support so thank you. I'll keep you posted about any dental link I may find.
About 7 years ago my top teeth about 5 suddenly went very loose. I had a brilliant dentist who though it probably was my BD, eventually they stabilised after about a year. I used to think I would wake up and they would have fallen out. They were that wobbly I could move them with my tongue. 3 years before that I had to have a root canal, just happened for no reason. Worked out fine. About a year after the wobbly teeth I suddenly got excruciating pain in one of the molars, I can take pain but it felt like my whole face was on fire. I went to a specialist for x-rays nothing came back no abscess nothing out of the ordinary. After having strong pain killers for a few weeks it just disappeared. But 6 months later after the pain the molar just broke off and I had to have it removed. They did find I had had an abscess on it at some stage I presume that what caused my pain. Then a couple of weeks later another molar broke off. Had that removed same side as the other one. I must say I was worried that this would continue and I wouldn’t have any teeth left. Thankfully for the last 5 years everything seems to have stabilised again. I have a new dentist as mine retired and he is of the opinion only do things that are totally necessary as it does seem to have a ripple affect. I never go to the hygienist as if she cleans my teeth and they bleed I get a mouth full of ulcers so now the dentist does that also. Sorry for the essay but the good news is my BD is now in remission and my teeth are stable along with many other symptoms. All the best.
Thanks for all the information. I'm so glad you are in remission! As far as the dental connection goes the new research is pointing to a connection between root canals and sudden onset Behcets symptoms and really many autoimmune conditions. Seems the tooth will still harbour low grade infections tipping your immune system over the edge and confusing the autoimmune response. I have traced the beginning of my symptoms to shortly after a tough root canal. No guarantees but I'm willing to consider anything and the logic seems sound. Seriously considering having the tooth pulled crown, root canal and all to see if will have a positive effect.Thanks again
Sorry about your pains. I cannot stop being amazed by the breadth and range of sufferings BD imposes on us. I join you in praying that we have the relief, grace and courage to overcome the adversities that we (and our families) face.
Yes, I have been experiencing dental and gum problems for some time. But because of Covid, I did not dare go to a dentist - my issues were not too bad anyway.
Lately though, something made me think that mouth wash might help. But I find it difficult to tolerate mouth wash - they sort of irritate my tongue and eating loses any pleasure. Luckily I found a dropper (from my vitamin d meds) and used it to apply the mouth wash to the affected gums/teeth.
Thank you for responding,I truly appreciate you taking the time.
It is an insidious illness! Believe it or not I actually had one Dr. having me rinse with Hibiclense wound cleaner as a mouth wash. Lovely experience. I tolerated that for about 4 weeks. Gave new meaning to pain threshold to an old infantry soldier. LoL As far as the dental connection goes the new research is pointing to a connection between root canals and sudden onset Behcets symptoms and really many autoimmune conditions. Seems the tooth will still harbour low grade infections tipping your immune system over the edge and confusing the autoimmune response. I have traced the beginning of my symptoms to shortly after a tough root canal. No guarantees but I'm willing to consider anything and the logic seems sound. Seriously considering having the tooth pulled crown, root canal and all to see if will have a positive effect.
My daughter sent me this link if you are interested.
Sounds like you are experiencing a awful time with your Behcet's.
I too suffer with teeth and gum problems and have blamed a root canal procedure for more issues in my mouth, face and head, although I have been suffering with Behcet's since my teens.
Nobody wants to entertain the fact that I believe stealth bacteria is a huge factor in Behcet's. I love to read articles such as the following it gives me faith some professionals are in tune with reality but unfortunately this is not shared by most people and we just get prescribed another pill or worse still as has happened to me being told by a consultant I might never find out what is going on with me and I should consider giving up trying... my response is so long as I have someone interested in finding out then I will have every test, scan etc going to help me.
myholisticdentist.com/2017/...
I have issues in my mouth and use soluble Prednisolone 5mg dissolved in a very small amount of water as a mouthwash, swish around for 3 minutes and spit out, it helps a little but I'm not convinced. My tongue still feels like its burning as does the roof of my mouth, pressure in my nose and head.
3 or 4 years ago I had swelling on my top pallet in the area of the root canal I was given lots of antibiotics, I still have it but believe this is contributing to my ill health. Seen a ENT specialist had camera in nose, CT of nose and nothing going on there, MRI of head shows nothing yet my face and head felt like I was going mad, eventually prescribed sodium valproate which has helped but not fully its just calmed things but still with me everyday. Joints and muscles every single day, checked for myopathy but no results, however taking Azathioprine would as I discovered likely skew my results of muscle biopsies which neurologist was not helpful with, should have come off it for 3-6 months before. Although saying this Azathioprine is also a treatment for this condition...
Do you have a dentist hospital/university who might be willing to look at your case.
I was told by a oral and maxillofacial surgeon to use Ibuprofen gel on my face in my hair and head as well as ice, I was fearful of using the gel on my face and head but he absolutely assured me it was ok. Also said to get mouth splint made which I have and has my a big difference to pain at side of my head and around my ears, apparently I clench, not grind, my teeth when I am asleep... no wonder with Behcet's.
I use tea tree a lot for mouth and skin, I use both neat on spots and diluted as a mouthwash or wash on my skin, it helps some people.
Really hope you can get some relief from this very very soon and answers too. X
Hi Gillian when you say tea do you mean black “morning breakfast” tea? I drink both coffee and tea but have never thought of using tea as a mouthwash but would be willing to give it a go. Cheers Lesley
I wish you all the best in your quest for answers and I hope God grants you relief and healing. I think we have an obligation to never give up in our search. I have come to the conclusion that it may not solve my issues but may help the generation behind me. I've pretty much committed to having my crowned tooth removed and pursuing that avenue to see if it will help. I'll let you know.
I will be very interested in hearing how you get on and I fully understand your reasons and thoughts. After reading your post and going back to my own research I realised I still had not tried myrrh oil and this will be my next step just to see if this makes any difference to my life .
Take care and wishing you heaps of best wishes to get some relief soon.
I also wanted to suggest you get your liver enzymes checked from the colchicine, this medication can cause hair loss (alopecia) liver damage, and extensive damage to the nervous and hematopoietic system.
hi, main reason i lost all the upper teeth, they were perfect but kept having cysts and infections deep in the jaw meaning. they thought the pain was "all in my head" as the x rays came back fine. Its only when they cut into the gum they saw the cysts one had gone so deep it had taken some of the upper jaw away and they inserted a metal plate. They tried me with denture but it caused so many issues they are planning some implants but its been delayed owing to the covid situation so that's been on hold now for 2 years.
Thanks for the information ThomasI hope all the best for you.
I think dental will be linked to many issues in the auto immune world in the future. We'll see in my case. Praying for the best possible outcome for you.
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controlling diet might help
Anyone out there think behcets is hereditary..
Is it possible to be symptom free?
In desperate need of help and advice about Behcet's.
International referral to COE advice please
