any help for diet with behcets syndome ...

[chrissie_lou]

hi im 18 and i am under the behcets clinic at birmingham city hospital.....i have to of the symtons for behcets but because i havent got a 3rd they wont diognose me with it ...iv been realy ill this wk and had to have antibiotics as my mouth lips and throat is all infected ..any advise will be grateful

[billi]

Hi Chrissi, so sorry you are having a rough time. As for help with ulcers here are some tips......drink Coca Cola as it tends to soothe the mouth, see your GP about getting a CLENIL steroid inhaler, spray and cream. For mouth and down below use inhaler several times a day into mouth, do not swallow. The spray is for the nostrils a few times a day and cream for any lesions on the skin. The inhaler can also be used for vaginal or anal ulcers. Getting a diagnosis of any autoimmune disease can take time and especially BD as it mimics so many illnesses. Sadly the average wait for diagnosis is about 10 years. The important thing is getting a good doctor and the right treatment for you whatever the illness. Stay positive , try not to stress, rest when you need to but be strong and enjoy your life.

Hope this info helps.

Hugs and Smiles

Billi xx

[chrissie_lou in reply to billi]

hi billi thanku for getting back to me ..im going to the behcets clinic tomoz theyv rushed me through an emergency appointment ...my lips look like iv done 10 rounds with mike tyson ,and theyv gone all infected..antibiotics are not working neither are my steroids ..i feel so run down and tierd ..i cant eat .just want them to go away xxx thankyou billi

[billi]

So glad you have an emergency appointment. I have been a sufferer of Behcets for almost 30 years and I can't pretend you won't have bad days (whatever illness you have) but I promise you will also have many many good days. Please let me know how you get on and I wish you all the best.

More hugs

Billi xx

[chrissie_lou]

thanku ..its good to talk to some1 who knows how i feel...i will log on tomorrow and let you know what they say x

[sian34]

Hi

Sorry to hear of your troubles Chrissie

At London COE they prescribe a triple mouthwash to use 2-4 times per day. apparently it was ssomeone's PhD!

It is some steroid and antibiotic which you dissolve in 10 ml of water then add 1 ml of nystatin.

I did not use it for a few days (as i thought it was making my teeth sensitive)then yesterday I had circa 25 pinprick ulcers which stated to merge into a few large ulcers - I used the mouthwash yesterday and by this morning all the yello had gone and just redness left. It does seem to stai your teeth but the hyginist got rid of all that today.

I am going to clean the surface of my teeth 1/2 after using mouthwash to get benefits without troubling teeth.

Just be careful anyone usingf inhalers - best not to use same one for mouth ulcers and ulcers elsewhere! (tip given to me in London!) especially tru if you are immunosuppressed!

Good luck at your appointment - things on mouth/face always feel aweful, don't they.

King Regards,

Sian

[chrissie_lou]

Thanku sian ..what is the actual name of the steroud an antibiotic mouth wash u use ..so I can suggest to them tomorrow xx

[sian34]

Hi

Betamethasone soluble 500 microgram

tablets are licensed for the management of

oral ulcers. One tablet should be

dissolved in 10–15 ml of warm water and then gargled ensuring affected

parts of the mouth are covered for up

to 4 minutes. The solution should not

be swallowed

This extract is from behcet factsheet on this site.

In addition a soluble antibiotic doxicycline 100 mg and 1 mlnystatin are addedin London version

Can be confirmed by London CEO - works like magic!!

hope they can oblige

[chrissie_lou]

Thanku sian ..I will mention that tomoz an let u know how I get on xx

[sian34]

Good luck!

[rubes311]

In all honesty the longer you have just two symptoms, behcets is a nasty thing to live with as you know. Are the hospital treating your symptoms? My dietician wants me to try a FODMAP diet... Look it up and this may be something that could help you.

If your body does have behcets then over time more symptoms will develop and as you're still young don't be too upset with not hàving a diagnosis in concrete x

[chrissie_lou]

Hi rubes thanku for response ..they are treating me with steroids but my body seems to have got use to them ....they treated me with colchicine but they gave me upset stomach ...xx

[billi]

Chrissi, just saw your last post re Colchicine. Many of us with the same disease are offered the same treatments but we are all individuals and what suits onedoesntsuit another both in tolerance and results. Sometimes we ourselves have to try a little harder and balance out the symptoms of BD against the side effects ofthe drugs. Best policy is to try any meds for at least a month for your body to get used to it, unless of course you have an allergic reaction. All meds have side effect sandwich Colchicine itis the tummy but most of us find with perseverance it is avery good med especailly in the treatment of ulcers and quite a few of us manage to stay on it for about 5 years and do have some good long remissions during this. Ask the docs as you don't have a diagnosis yet and not too many symptoms I honestly, AND THIS IS JUST MY OPINION, think you shouldn't go onto anything stronger at this stage until you have all the facts.

Take care and don't be afraid to ask questions at the hospital.

Hugs

Billi xx

[MrsBeau]

Hi Chrissie,

If that mix in the mouthwash doesn't work for you, there are others. The concoction described above has been used in the USA for years; pharmacists make it up for patients with a prescription. As a result, there are lots of possible ingredients to tweak it for your particular symptoms. If you google "magic mouthwash", there should be lots of useful reading for you. I know, here things are a little different and if you can't get the prescription from the hospital, speak to your GP or dentist.

BTW, you say steroids have become ineffective. All steroids or just prednisolone? The class of meds is quite large with subtle differences between them. Betamethasone is a steroid..... If you're stuck, try swooshing with doxycycline (x4/day). True, it is classed as an antibiotic but it doesn't mean your mouth is infected; in addition to killing bugs, it has a raft of other activity - one of which is active promotion of tissue regeneration.

As with all these things, try it and see.

Beau.

[chrissie_lou]

Hi all a little update .just at hospital theyv put me on a methylprednisolone drip...have to have another one monday ..then cum bk friday then they r gunna decide wether they are gunna start me on azathioprine xx

[nettie545]

Chriss_lou. Honestly! I find it so frustrating that they wont diagnose you because you haven't got a 3rd!! If you have mouth and genital ulcers and have had them for over a period of time and they don't go away, that should be enough to convince them! Have you ever got a package of information from behcets.org and given it to the Clinic at Birmingham? If you google Vasculitis or Behcets you will get so much information that will help you. I used to rinse my mouth out with Bicarbinate of Soda when I had mouth ulcers from Behcets, it really takes the pain away. Also, with Genital ulcers, I used to bath in 1 cup of Bicarb to half a bath full, takes the pain away for a period of time. I used to keep the bath like that, and after going to the loo, when I was burning, I'd jump in that bath! Potatoes, tomatoes, bananas and Avo, really burnt my ulcers. Funny enough, Citrus didn't burn. I used to boil Chicken, beef or Pork and then put the liquid from that in the freezer and warm it up and drink that. At one time, my ulcers were so bad, I had to drink that through a straw for months as I couldn't chew anything. My tongue was also full of ulcers. What other symptoms do you have? Bowel problems? Burning stomach? Or stomach ulcers? Leg pain? Sore patches on your skin?

[chrissie_lou]

Hi netti iv been the behcets clinic this morning ..an they put me on a methylprednisolone drip ...I have to go bk monday for another one ...I have mouth tongue throat an lip and also genital ulcers ..im fatigue .an been getting a numness in my middle fingure on my left hand not sure if thetes any connection . X I gave all the information for the behcets org ...plus the behcets councillor. Xx

[nettie545]

Chrissie - I really hope the drip helps and that your ulcers dissipate quickly. It is exhausting I know, try to rest as much as possible. The most important part of your rest is your mind. Try to focus on positive things, don't let dark thoughts take over and don't give in to them, just push them out of your mind and replace with something positive. Your mind has power, so visualize yourself healed and well and doing something you haven't been able to do for a long time - like eat something delicious, run in the garden, anything that will give your mind a goal for healing. It's more important than you know Chrissie! Love and prayers.

[chrissie_lou]

thanku all for your help and kind mesages ....this is the worst case iv had ..and im so glad i came across this site love to you all

[belle623]

Hi Chrissie_lou

I am so sorry to hear you are having such a ruff go of it. There is hope; I know that seems impossible at the moment. Nettie545 is right, try to keep positive. Journaling some times help. Or post your worries on this message board. It is important to get the negative out so it doesn't so it doesn't become toxic i side you.. In regards to nutrition, veggies, fruits and lean meats. No sugars, corn or flours(wheat). They exacerbate the inflammation and other BD symptoms. Lots of water. I know being fatigued and in pain does not make moving a viable option; but if you can even pace in your room. Get up and stretch; do not over do. But, it will help some. Please keep talking to us and us questions

[chrissie_lou]

Thanku so much knowing I have support here is great ..I feel a lot better now im on prednisone and azathioprine. .been on them just over a wk so hopefully they will work .I go for blood test wkly xx I will keep all infirmed thanku for being here for me x