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Behçet's UK
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Would someone have a glance at my symptoms and see if it is possible Behcet's please?

Hi - I am now 56 and have been suffering now since 1998 as a result of a series of surgeries (21 anaesthetics since then!) to repair a Recto-Vaginal Fistula of unknown cause. It has now been repaired successfully but has left me with 4 abdominal hernias, a colostomy, degenerative discs in my spine, arthritis in my hands, diabetes type 2, sleep apnoea, hyperhidrosis, Fibromyalgia (except I do not think it is as my pain seems different to that of my fibro friends) neuropathy, depression and anxiety, nausea, very poor mobility, nose sores, dry skin and eyes and mouth, ulcers and sores (my tongue feels as though it is on fire!) I am not a very good diabetic recently as I get so fed up with feeling sick all the time .... however, all of a sudden after 56 years of never having toothache and having stained but strong teeth, my teeth are as my dentist describes, 'melting' I have lost bone, they are loose and my whole jaw aches, she is literally filling teeth every 2-3 weeks at the moment, and she has never seen anything like it. I am currently awaiting another lip biopsy (Sjogrens Syndrome, which they were sure I had 10 yrs ago but no positive bloods or biopsies then either) so am expecting another negative ..... then just saw an email from this site mentioning sores and ulcers etc so am wondering if this could be a possible scenario? Any thoughts would be very welcome!

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I am so sorry to hear of your suffering. I have been lucky with my BD compared to lots. The only thing I can relate to is the teeth but then we all have such different symptoms. My teeth suddenly started getting loose top right hand side. A couple just died and in the end two cracked badly and had to be removed. I had terrible pain, it stopped as quickly as it came. Had x-rays to see if anything was wrong but nothing no abscess nothing. This went on for about a 2 year period. For the last year been fine touch wood. They put it down to my BD. Hope this helps all the best.

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Hello,

Have you been checked for Wegener’s? It is very similar to Behçet’s, but if it is untreated, it can shorten life expectancy more than with Behçet’s. I don’t mean to scare you. With proper treatment, Wegener’s patients can have a normal life expectancy.

The part that concerns me is that you are having nasal ulcers and your rectum has had extreme tissue damage. Have you had any change in the outward appearance of your nose? How is your nasal cartilage holding up? Is there any sign of perforation ofnyour nasal cartilage? When you Google Wegener’s, you will see extreme examples of the damage that it can do. The condition is extremely rare, just like Behçet’s is rare. Also, have you had any issues with your kidneys?

For your oral ulcers, I would recommend Plaquenil. It was a magic bullet for my oral ulcers. At least you will be able to eat without being in so much pain.

Will you be able to be reconnected once your rectum heals up? It concerns me that you’ve had multiple procedures for the fistula, as the scar tissue can really be a problem in that area.

This is going to sound completely counterintuitive, but I have been able to reduce the severity and length of time with issues of the rectum and genital ulcers by using Elidel Cream. It is expensive, but the cream stops the skin’s immune response and helps things heal. A doctor might look at you like you’re crazy for not using antibiotic cream, but Behçet’s (or Wegener’s) involves an inappropriate immune response that eats whatever tissue it is affecting. You have to shut that process off.

Dave

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Hello 2106 and Dave, many thanks for replying to my post ... the nose sores are a relatively new thing really so as yet no obvious signs of anything there other than recurrent sores every maybe 4-6 weeks? My mouth however is a different matter! It is literally rotting, and quickly, my dentist has never seen anything like it! Having never had toothache for the first 56 years of my life, I am now suffering with it far too regularly! Not just one tooth generally, it is my top or bottom set hurt, and then she seems to be filling them every couple of weeks! Thank goodness I am exempt from charges! The time before last I ended up looking as though I had been in a fight as my face was all bruised! Afterwards my mouth is full of more sores and ulcers from where the dentist has been 'attacking me'!

Until I had my lip biopsy in 2010 they were certain I had Sjogrens and were going to give me Plaquenil, until it came back -ve and they said it was only Sicca Syndrome with no auto-immune component to it - we will see but I reckon my biopsy will come back negative as usual! Sigh ........ wonder if my dentist would prescribe it for me? What exactly is it's MO? The only bit in my bloods that is ever out of range (other than my blood glucose) is my CRP is always raised but not hugely, and written next to it, it says 'to be expected'! So there is something inflammatory going on somewhere in there .....

My fistula is still of unknown origin - no Crohns, no vaginal births and no kinky sex, so we are all baffled on that one. I have had my Ileostomy converted into an end Colostomy as I have decided to keep it, as I do also have a high familial risk of bowel cancer.

Genital Ulcers, no, thankfully, the fistula was bad enough, although my pelvic floor is understandably a bit scarred etc but doesn't cause me any issues as I am no longer sexually active - rather have a box of Thorntons and a good TV series!!

Neither BD nor WG have ever been mentioned, although MS has now been visited 3 times since I was about 19 or 20 .... arthritis type stuff I have very stiff and swollen hands especially in the morning (as quite often is my face too ) Most of my fingers have arthritis lumps on the joints of my knuckles - one finger in particular, 2nd finger on my R dominant hand has a Mixoid Cyst on it which does get ever so sore when it has filled up with fluid as I keep knocking it - hand surgeon says he will do it but he wasn't so keen when he saw the skin of my hands around this lump, as I look like I work as a mechanic!

I also have Stasis Dermatitis in my legs where the skin is hardening and lumpy due to lack of blood circulation - eventually it will thin down and become a leg ulcer I imagine, and who knows what exciting surgeries I might just be in for then??

All started in 1998 when I was galloping across Windsor Great Park in front of the Castle having a wonderful time, and has all gone very downhill since! :'(

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Are you staying extremely well-hydrated? I hate to ask this, but who cares if there is an autoimmune component or not if Plaquenil will help the oral ulcers?? Have they tried clearing you up with Prednisone? Your diabetes would be too uncontrollable if you were on Prednisone all the time, but a good strong taper might help, at the expense of your blood sugar.

Keep after your doctors, and don’t take no for an answer. It can take 15-20 years for a BD diagnosis. Doctors will poke at you and nonchalantly wave you off until the next appointment - which could be a long time away. It is a huge time-waster.

Oh - and see if your dentist can give you a steroid mouth rinse. Also, Biotene is a good mouth rinse that is non-prescription. Can you find sensodyne toothpaste where you are? Toothpaste is crucial, and you could be reacting to sodium laurel sulfate or other harsh ingredients. Sensodyne is expensive, but it might be a huge help - get the “total care” kind. Dip your toothbrush in mouthwash every time before you brush to kill germs. Your type-2 diabetes will make you allergic and/or intolerant to things you were fine with before. If you swish with mouthwash, don’t use the kind containing alcohol. It’ll make the ulcers worse.

Do you like black olives? If you snack on them during the day, the olive oil will lubricate your cheeks and tongue so the tissue doesn’t dry out and stick to your teeth, tearing little holes and causing bumps that get irritated and ulcerate.

If you’re not gluten-free, I would strongly recommend it, and you have to be 100% strict with it. If you can avoid soy, I would recommend doing so as well.

Rambled on a bit. Hope it helps. Best of luck to you!

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Quite - reference the Plaquenil! I am on so much medication anyway (possible cause of the dry mouth?) it wouldn't do any harm in my opinion .... I will see if my dentist will prescribe it for me. I do drink well, but can't do water as it just tastes vile, so use no added sugar squash. Now then as for Toothpaste - I can no longer tolerate anything tasting of mint and it seems I am now allergic to the foaming agents they use! The only one I can find at £15 a tube that suits is Tooth Mousse. Mouthwash makes me stick to the ceiling in agony as my tongue is raw .... My dentist tried to prescribe Fluoride, but it's just not available, so am going to have to get that from abroad when I have enough money to do so. Unfortunately I hate Olives!

I did have to have a weeks worth of steroids once, and I felt comparatively wonderful, I have to say, but GP not keen due to my weight issues ... all a bit of a vicious circle really xx

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I can’t use any toothpaste with chemicals in it as it causes ulcers big time. I use Greenpeople organic lifestyle. Since using have only had a couple of ulcers. They do lots of different ones have a look on internet. Nothing to loose. They think my teeth cracked and roots died due to inflammation. I now take a vegetarian flax/linseed oil capsule once a day for my inflammation seems to help. All the best

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Hi Lottagelady, Thank you so much for sharing here and to the lovely people who have responded. For info., this is the link to our Overview Factsheet. behcets.org.uk/wp-content/u... You may also want to research Sjogren's Syndrome too. Good luck in finding the right diagnosis and ultimately the right treatment for you.

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Many thanks - yes am currently being tested for Sjogrens, but had never heard of BD, so that is another possibility too! x

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I hope you get the answers you need really soon. All the best to you and please do let us know if you need anything else from us in the future. info@behcetsdisease.org.uk

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Just to let you all know - I have Primary Sjogrens - what a surprise! Diagnosed following +ve lip biopsy ....

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You had a negative lip biopsy for Sjorgrens before didn't you?

If so , that's interesting to note as I have had a biopsy and it was negative too , but still have the dry eyes and mouth issues .

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