Bechets

[Tibz]

Hi can you help me im struggling with bechets for a very long time im mentally physically emotionally fedup.I'm at the stage were I cannot eat now.

Please can you all tell me how you get on.

[Miataman]

BD hits everyone differently.

Magic mouthwash is you friend. Make sure you are doing all you can to reduce stress in your life. I've found vitamin supplements to help. All of the B complex are great.

[Tibz in reply to Miataman]

Hey I've tried everything nothing is working for me I've just had enough can't even be normal I can't eat properly or sleep anymore.

[Ayea]

I went through the mouth ulcer cycles for 10+ years before I was finally diagnosed. I sympathise, it really can be hell when they are at their peak and you can barely speak or eat... just a biblical torture. Mine usually followed a cycle of getting worse for a week then reaching the peak pain for another week, then finally they would begin to heal over and you were on your way back to some kind of normality. As soon as they start I would use salt water as a mouth wash -- hurts like hell but it definitely speeds up the healing process. Oraldene mouthwash can also help them heal. Eat soup and bread or rice when they are at their worst. Just hold on, it will eventually turn the corner and begin to heal again.

I am now on Colchicine and azathioprine and that has pretty much stopped my ulcers (I typically have one here or there now - before it would be 10+, each huge and inflamed and it felt like bare nerves had been exposed). If you are not taking these meds, see if you can get a Doc to prescribe them (actually colchine alone pretty much fixed the ulcers).

Hold on tight, each cycle does come to an end, then you get a break and some peace!

[Tibz in reply to Ayea]

I dont feel like its ever gone get better tbh

[Tibz in reply to Tibz]

Had for a long time and it's really affected me so badly its so sad no1 understands how yiu are feeling

[Arith50]

For me Colchicine and azathioprine didn't work, the best I've found is Prednisolone and also the use of a steroid mouthwash called Betamethasone(works wonders!). I've been the same place you are many times with up to 18 mouth ulcers and resorted to soft foods like eggs as they are so versatile. Hope things pick up for you soon.

[Amy-Tenacious1 in reply to Arith50]

I agree: a steroid mouthwash helps (also soothes the tongue). I also use those ulcer stickers you can put in your mouth: they stick really well and coat the ulcer. Colchicine just upset my stomach, azathioprine wasn't enough, but methotrexate helped a lot.

[Ayea]

Tibz, have you been diagnosed and treated? You have not said what you have tried?

I was recently diagnosed (November 2023) after more than a decade of symptoms and being told I had health anxiety, fibromyaligia, anemia, arthritis, tendonitis etc etc... it was years of hell to be honest. When a flare of severe ulcers would come on top of all the relentless muscle and joint pain and the pustules all over my body -- I would feel like the biblical plagues had hit me. I used to wake up in agony and wonder how I could go on! Colchicine has helped the ulcers and pustules in my case, but as Arith50 says, its doesnt work for everyone -- its seems with Behcets, everyone is a little different! There are quite a few treatments that may help you if you have not yet started on that route. Have you been referred to one of the Behcets centre of excellence (BCOE)? I am currently waiting for an appointment in London. They may be able to ease your pain if you have not seen them already? Meanwhile, colchicine, azathioprine, mouth washes and steroids seem to be the first line of treatment and all are available from your GP/Rheumy while you wait for your visit to a BCOE. I find exercise helps too, althought the body resists!

Behcets can really be like hell at times, but knowing what is causing your problems is a big step forward and it seems most people get some kind of relief with the right help.

[Tibz in reply to Ayea]

I have been diagnosed I've had this crap since 2013 and I've really had enough I've tried everything I'm on azithprine .I think its gone get better then I have another flare up I've lost so much weight which is very sad cause I'm already tiny..

I'm just fedup I don't know what to do apart from cry every day thinking it's gone get better but actually it's gettin worse.

[Ayea in reply to Tibz]

Hi Tibz... the combination of mental and physical pain that can come with Behcets can be completely overwhelming. I'll be honest, there are time I have wished I had never been born. When it's bad it can be like being in a prison where you are tortured every day... fortunately, there are usually periods where it eases up a bit and you get to take a breather - a moment in the sun...

In terms of managing the hellish symptoms day to day, I find it really helps to go outside every day and walk or exercise in some way. You have said walking is difficult, but try to do it anyway or try cycling if you ride a bike. Your whole body resists and screams with inflammation etc, but its so important to keep moving your body and to keep going out, seeing the world and interacting with people. I find if I do this, I start to have some better periods. It can be as simple as walking to the supermarket to get some shopping or a walk/cycle in a park or somewhere there is life and beauty, something to take your mind away from the anguish. It can be really difficult and you do what you can manage, but always try to do something. I am now able to go swimming every other day, which is an enormous help. Also, after walking/exercise, try to stretch your body and relax the muscles if you can (that can be difficult, be just trying helps). Magician suggested yoga poses and breathing techniques - I also find this really helpful. I try to do a sun salutation every day and generally try to stretch all of the stiff painful bits - I click and crack and tremor and it seems futile but actually it does help, you just have to keep doing it. You still go through the good and bad periods, but keeping a daily routine through it all helps keep you away from the darkest places.

In terms of medication, I was told be my opthamologist (who specialises in autoimmune eye disease) that the most effective treatment is Infliximab. I believe you can only be prescribed that at one of the Behcets centres and only after the Azathioprine has failed to help (it sounds like you are at that point). I don't know if you have already tried Infliximab or one of the other "biologic" treatments that the Behcet Centres use in severe cases? If not, perhaps some of the other members here can tell you about their experience with that -- I have not got to that point myself.

I think a key step is to try to get the ulcers under control because when they come on top of everything else, it really does become difficult to manage. Hopefully the Behcets centres will have something that will help you. The ulcers usually come in cycles and something triggers them... for me too much sugar or alcohol are examples of my triggers.

There is something else that really helped me... and that was HRT. I think hormonal change and fluctuation was a really big part of my problem... I used to just get relentless (almost non-stop) ulcers and I was lost a lot of weight before I began HRT... the HRT has not fixed the Behcets, but it certainly made it much more managable and reduced the frequency of the ulcers. I think if your Testosterone or Estrogen levels are low or unstable (ie menopause/manopause) that can be very inflammatory and really aggravate the Behcets.

[CecilyParsley]

Hi Tibz, I am so sorry to read your post. Have you tried the three in one mouthwash? My Rheumatologist provides soluble prednisalone, soluble antibiotics and Nystan liquid. I mix all three with warm boiled water and rinse and spit four times a day. For me it does expedite the healing process and reduce the pain. I hope you find something that helps you.

I think we are all different, for me it is the genital sores that cause he such pain and make me emotional and fed up. It is the cumulative affect of symptoms.

[Tibz in reply to CecilyParsley]

Hey thanks I appreciate the reply It's not my mouth only its all over even I suffer from ulcers in the private parts I have been given what you said I need to try it. Thanks x

[CecilyParsley in reply to Tibz]

Good luck. Like you I get sores all over my vagina it is horriblely painful. I haven’t found an answer for those sores but the three in one mouth wash does ease thebpain and duration of mouth and tongue sores xx

[Tibz]

It's very sad tbh I think im literally mentally drained out. 😪 I cant eat sleep work properly or even walk I get so tired. I've really had enough like I don't know how people are handling it cause I cant do it anymore. 😭💔😢

[magician]

Hello TIBZ

I do sympathise with your situation. I suffer from sores, but very mild compared to what you and other friends in the Forum experience. I will therefore not offer my thoughts on this aspect.

My main issue is with my eyes, courtesy of Behcet. Over and above the threat to my eyesight: endless fatigue, headaches, vertigo, side effects from medication etc, etc ad nauseum

On top of health issues , i face the usual challenges that every human being, Behcet or no Behcet - the mental drain can become almost overwhelming.

To address the mental aspect I have tried all sorts of relaxation practices - yoga poses, yoga breathing, walking meditation, chakra balancing, using crystals, chanting, drawing, painting, playing music, etc etc. I guess they each contribute something positive to my frame of mind.

The latest that I am trying is the meditation with alpha and delta brainwave music. They both have the reputation of relaxing the mind and through the relaxation, promote a healing environment in the body. I found some on the internet and also in some sites that sell “text to speech books”. I will deliberately not mention any specific provider, as each of us will have different experiences.

Lately, more challenges have come my way and I needed to beef up my Mental Warfare. It is almost comical: I drew inspiration from Harry Potter - whenever he was facing Death Eaters, he would call upon a mythical figure called the Petronas to drive away the Death Eaters. I thought - the author is so clever to have thought about Petronas.

Then I remembered that we do have our angels and spiritual guides to help us. And so the angels must now be very familiar with my pleas for help!

So there, the main components of my Mental Warfare repertoire.

Wishing you all the best.

[Tibz in reply to magician]

Hey how are you never seen anything like this I do feel that the affect has taken me vert badly. I cant eat sleep as I have pain all over I do feel like it's affecting my eyes now.

I'm trying everything but nothing seems to be working properly 😕.

I don't even know anymore..

May I ask is anybody getting pip for this illness and was it successful.

Cause it is a serious condition and needs to be taken seriously.