Tips and tricks / Stopping symptoms - Behçet's UK

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Tips and tricks / Stopping symptoms

Lucets
Lucets

Is there anything that anyone notices that helps? I’m looking for help with getting rid of vaginal ulcers and keeping them gone. I am noticing a pattern though. I seem to get more around the start of my period. I don’t have any mouth sores at the moment but I do have a red raised spot on the right side of my face, and have been feverish with night sweats. I’m going to try to eat clean and get rid of sugars and processed foods and see if that makes a difference. Will keep those that are interested up to date. Please comment back and let me know any tips that you have for anything beçets related! It’s greatly appreciated.

Wishing remission for everyone.

9 Replies
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Forgot to mention I am currently on 20mg of prednisone I am debating starting back with colchicine not sure yet and my doctor wants to start me on Imuran but I’m not sure how I feel about that

lesleyg
lesleyg
in reply to Lucets

Hi Lucets, I think it is a matter of trial and error. What worked for me was keeping everything down below absolutely dry. At the time it meant changing underclothes at least three times a day (morning, noon and night). Quite a few recommend using a steroid inhaler on the ulcers but mine had basically cleared up by the time i heard about that. The other thing is for mouth ulcers I swear by a remedy called SM33 in Australia. One of the main ingredients is rhubarb extract. It cures my ulcers in one to two days. There are two forms - don’t get the gel, get the one you paint on.

Hope that makes sense. Let us know how you get on.

lesleyg
lesleyg
in reply to lesleyg

I forgot to mention cotton is much better than nylon for underwear.

Lucets
Lucets
in reply to lesleyg

Thank you so much for your advice. I was diagnosed last year at 21 years old so this is all new to me and I don’t really have anyone else that knows what I’m going through. I will definitely try keeping down below dry and see how it goes. That could be part of the problem being that I pretty much air dry after the shower usually. Will also be checking out the SM33. Thanks again!

Hi Lucets

I have used neat tea tree oil successfully for oral and genital ulcers but since starting Azathioprine/Imuran this year my ulcers are less frequent but the ulcers are larger more deep set and take longer to go. I had a toxic reaction to Colchicine in 2017 so not able to take and I found no difference with Steroid. I have also used Corsodyl Dental Gel over the last couple of years which I had some success with.

I am unsure of others but I can feel a sensation when oral and genital ulcers are going to happen, guess its through decades of being diagnosed and having to fend for yourself... that teeny weeny tingling feeling needs treating immediately just don't wait until things start to appear.

Just about to try a steriod mouth wash so will see how this goes.

Write down your trends this will help you recognise and treat yourself better :-)

Gillian

Lucets
Lucets
in reply to gillianTS

My doctor is trying to start me on Imuran and I’m too afraid to try it out bc I’ve heard too many bad things. As far as telling when their going to come I haven’t noticed anything yet but this only started happening to me a year ago (scared me to death) but I notice pain a sometimes and think that I have ulcers but I check and then there’s nothing there so idk I will try to look for signs that they are coming though. Also whenever I’ve an oil of any sort it irritates them further for me like I tried Vaseline and coconut oil, but I will give the tea tree oil a whirl. Thank you so much for responding!

gillianTS
gillianTS
in reply to Lucets

Hi Lucets

I felt exactly the same as you I did lots of reading, asked questions on this group and decided it could not be that bad if thousands of people are taking it, I would just say if you do venture down this road then get regular blood tests, I have been having weekly tests for months and months now after having a blip as well as going up the dose in increments, I am pleased to have the testing because it covers my full blood count, Liver and Kidney function and Inflammation markers, the protocol here is if your Neutrophils fall below the level then you have to be taken off the drug unless discussed with the consultant first or you have a known infection. I feel as though I have to keep well and away from peoples infections, that said I am just getting without a horrible throat infection and either a cold or some kind of virus that has affected me quite badly, I do feel this is because of the immune suppressants, but who knows...

In my experience using vaseline on ulcers did not work.

Tea tree oil is not an oil in the sense you refer to it is essence from whatever plant this is extracted, like lavender oil etc. It is extremely powerful stuff and requires diluting, the majority of people dilute in oil like almond oil, wheatgerm oil or something similar. What I do is dilute around 5 to 10 drops in warm water, not too hot you body has to withstand this, I put this in a liter plastic bottle with a squeezer on the end, I add the water and drops and give a huge shake for several minutes, I then gently squirt the mix over the ulcers, I do this several times a day, dry off using a soft towel. I use the sam dilution rate on my mouth ulcers, usually and I use as a mouth wash and gargle, DO NOT swallow the mixture. I have used neat tea tree oil on oral ulcers and depending on where they are genital ulcers but you have to be very careful.

Those feelings you are getting when I get those I act upon them straight away I do not wait for my ulcers to appear, I was with an oral and maxilliofascial consultant at the end of October and he agreed fully with me the biggest problem with ulcers is allowing them to take hold untreated for too long and if you can nip things in the bud before they start then you might get away with small ulcer otherwise the bacteria gets hold and they grow and become very sore. You can use the Tea Tree Oil water mix to rinse your mouth out after eating and drinking.

I know a great number of people on the group take Colchicine with fantastic success but for me I was not one of them, I took them for 10 weeks and had a big toxic reaction to the drug when it was tried to be increased because my symptoms were not improving enough, I had been asking for my blood to be monitored but told it was not necessary and then it happened, if I have any advise regarding this drug it would be insist on have regular blood checks and if you feel poorly in the slightest please get it checked out

We are all here to help Lucets I continue to get so much benefit from this group it is great regardless of how little or big the problem you might be having, whether it is personal or not someone will be able to help, provide comfort and understanding. I speak to my consultant all the time about this group she understands the benefits especially when there is no other kind of avenue to discuss things here locally or nationally.

Good Luck going forward and I really hope the Colchicine works for you.

Gillian

The diet helped me tremendously, among many others here. Going sugar free is VERY do able. Just read the labels.

I have heard of women flaring around cycles, would you be interested in using calcium citrate 600mg the week before your period to see if it would help?

its available very cheap from pharmacies, no interactions with most drugs, as it a normally occurring supplement. Im thinking the hormone jump/drops before the menstruation is flaring you, possibly causing the inflammation (prostaglandins). Either way, I use calcium myself, 600 mg once or twice daily and noticed a HUGE difference mentally and physically. Cant say it would hurt to try.

good luck-

Hi, for me, colchicine, and synalar ointment for the genital area the latter worked overnight. I agree with the hormonal pattern and changes from peri menopause and menopause can also affect it. Additional bathing so just warm water and salts helped me. I’m in a similar place with imuran, recommended but not yet taken. Any anti inflammatory diet choices seem to help too - no diary or gluten etc. Best wishes

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