Behcet and very bad mouth ulcers in throat and esopshagus

[Enyce]

Hello everyone. Couple of months ago I was diagnosed with Behcet. It all started with problems with nose and and very big mouth ulcers. Then it started to go on throath and esopshagus. These were really hurting that I couldnt eat anything. I lost 10-12 kg from march till now. Before I was professional football player never had any health problems. Now suddenly I am on prednisolone, Cyclophosphamide 6x therapies, little time i had chlorocine. I feel that my immune system is falling apart. 4 times i was in hospital from may I was that bad. Now they say in the future i will take Adalimumab injections for some period. Does somebody know how to improve imunity and what to do with sports? Thank you for your answers

[red_wine]

Really sorry to hear about your mouth ulcers. I know how painful they can be and how it can effect everyday life. I never found decent relief for the pain but eventually learned to live with it.

Thankfully my behcets has died down as I’ve got older but I took prednisone and asathiprine for a long period which helped. I learned some things that helped me…

Identify if there are certain foods that are making things worse. Salty or sugary snacks in particular used to be a trigger a bad case of ulcers.

Be aware of when you start you start to feel tired or run down and ease off accordingly by getting more rest, reduce alcohol, eat healthy, reduce stress etc…

[CecilyParsley]

Hi, sorry I cannot help with the immunity or the sports queries but I might help help with the mouth and throat ulcers. My Rheumatologist prescribed soluble steroids, soluble antibiotics and Nystan liquid. I mix all three with warm water and rinse and gargle four times a day. It takes the sting out of them and reduces the length of the flare. It is worth a try. Good luck x

[Icefire]

Hi,Sorry to hear about your horrible introduction to Bechets disease.

I found supplementing methyfolate to be really handy in preventing mouth ulcers. Just check it doesn't interact with any of the medication you take. I think most of them deplete it!!

Changing my diet to low sugar, loads of veg, unprocessed foods, dairy and gluten free has really helped. Just be careful what nutrients you are cutting out if you make diet changes.

Sports wise you need to be led by your body. Exercise actually really helps me unless it's to intense and then will cause a flare. If you've lost your fitness then try to build back up gradually. I have run a marathon and competed in triathlons in the past but had to start my training with a 4 minute run and build up over a year or two. If the fatigue kicks in you just need to rest.

I'm a believer in nutrition first, drugs second. If you can figure out what triggers you ( for me dairy and gluten) and what helps (veg and unprocessed food) then maybe you could work with Dr to get off some or all of the medication. Obviously we are all different.

I wish you luck.

[Enyce in reply to Icefire]

Thank you for you answer. It is interesting what triggers some people. Dairy( talking about raw milk, goat milk and some raw cheeses from farms) are supossed to be one off the healtiest food in these days. Our grandparents used to grew up on that and they were quite healty. Maybe is in the food a lot but tempo of life and stress i think it is the main factor, but who knows I will try to find out what is the main trigger and i hope i found it. So now you run marathons normally again??

[Icefire in reply to Enyce]

I can tolerate butter cooked into things and have tried several times to reintroduce dairy. I think there is a few different schools of thought on dairy. These days it's all adulterated and homogenised in the super markets but unfortunately even raw directly from the farm will not agree with me. My food intolerance probably stems from leaky gut which can be induced by stress, antibiotics, overtraining etc as well as poor diet. I now have an immune response to dairy and my body won't forget. However I was reacting to a lot of different foods in the passed and these have mostly eased. I kept a food and symptom diary for 6ish months and started to see a pattern. I think the same 'healthy foods' our parents and grandparents knew have now been geneticly modified and covered in pestercides. They are not quite the same as they were. But also stress, lifestyle and chemicals in our environment plays a part to. Plus antibiotics for medicinal use and in our food chain have effected our micribiome.

I'm not back to running marathons but that is due to small children and not enough time to train. I feel well though and am running, swimming and cycling to my own capability whilst working part time and being a Mum. I have the energy but not the time!! I think the right amount of exercise really helps to bring down inflamation. Too much and you'll flare, too little and you become more sluggish.

I've also managed to steer clear of long term medication. I have used prednisolone a few times in the short term to settle a wild flare. I was written a script for Colcechine but have not cashed it in. My Rheumatologist was very supportive of me managing my illness with diet. Not everyone can but lots of us do.

[Icefire in reply to Icefire]

P.s. I had Bechets when I ran the marathon and triathlons. I didn't know it till later but was hospitalised with ulcers in my teens. I didn't get a diagnosis till I hit 39. Lack of diagnosis led to my own research on nutrition and how to feel my best. I knew I was 'autoimmune something'!

[Icefire in reply to Icefire]

P.p.s. Whilst training, you just have to increase gradually not shocking the system. I always had rest days in between running days. I did that intuitively and later learnt about pacing.

[gillianTS]

Hi Enyce, I wonder did you illness start with any triggers. Who made the Behcets diagnosis? I ask since you say your illness came on suddenly and you had been healthy previously with no health issues. And you have been hospitalised 3 times in a short period of time. In my experience behcets is usually something that starts gradually and goes through and flare ups of varying degrees. Mostly, but not everyone, has genital ulcers, and mouth ulcers are one of the biggest factors, but mouth ulcers are common in many other conditions. My nephew has horrendous mouth and esophagus ulcers and his consultants have put this down to gastric issues and issues in his gums. They will not entertain Behcets.

I have used the the following New Zealand dermatology website for many years, it might be helpful, the resource has thousands of photographs and helpful links:

dermnetnz.org/topics/behcet...

Diet has a huge part to play with many conditions, my consultants suggested removing all refined carbohydrates, pasta, flour, ready meals, bread, cakes, biscuits etc etc and I have found this helps. As well as sugars.

I started with symptoms at 16 and did not get a formal diagnosis until my 40's. Up until then I used natural remedies, supplements and antibiotics. Nobody would take ownership, I was seen by gynaecology, gastroenterology, dermatology, oral and maxillofacial, rheumatology, dental hospital etc. When I was in my early 30's a dermatologist removed 3 genital ulcers believing it was a repeated skin issue that was causing them there but had no knowledge why I got ulcers in my mouth. Eventually I was seen by a specialist who had experience with Behcets and a formal diagnosis was made.

As far as your sports are concerned just continue with what you feel comfortable with, just do not overdo it otherwise your body will suffer for much longer periods.

Good luck with your health and wellbeing.

[Enyce in reply to gillianTS]

First thank you for you reply. Yes it all came suddenlly, I had problems with nose few months and then started with really big ulcers. First they thought it was vasculatis but after second time in hospital they saw some changes on the skin and said that mist be Behcet.

Dermatologist made that diagnose. And i had all kinds of reaserches on my body, had gastroscopy 2x times and tissues from there showed nothing about gastric problems. Had colonoscopy too and nothing there too. I think over the years things have loaded( stress, fatigue, sometimes bad sleep, family problems) and my opinion that must come out somewhere. So calm life and happy life I think is the best treatment that there is. Now I will start with Humira and lets see where that goes.

[Icefire in reply to gillianTS]

Gillingham TS do you take any meds and how closely do you stick to no refined cards? I've noticed lots of us use a low sugar / carb diet to reduce symptoms. For interest I am using a continuous glucose monitor. My blood sugar is all over with massive spikes and lows. It's a relatively new technology with some experts all for it and others against it in a non diabetic patient. (Also a caution from some that it could encourage disordered eating, so be careful anyone prone to that). I read the glucose goddess and am trying some of her ideas.

I cook from scratch and rarely eat processed food. (These days, different in past). I'm finding, rice, potatoes, apples, bananas are spiking my blood sugar really high) this process is according to some inflamatory and damaging to vasculature.

I've managed to get my spikey bloods much more smooth and already feel better. At this stage I don't know if it will last.

In my previous comment on this post I said I couldn't tolerate dairy. I seem to be doing better with live yogurt and cheese since keeping blood sugar levels more steady. Is this all in my head? 🤣 Was it poor glucose management all along?

I'm wondering just how long my blood sugar has been so spikey?

[Icefire in reply to Icefire]

*cards!!

[Icefire in reply to Icefire]

Autocorrect keeps saying cards not carbohydrate!!

[OpsDave70]

Hydroxychloroquine reduced my ulcers by 90pct. Also called Plaquenil, 200mg twice a day. It was initially prescribed to treat chronic fever, but it has also made a life-changing difference with my ulcers. It takes a while to be effective, up to three months, but I started noticing changes in a few weeks. I hope this is helpful to you. Best regards.

[FrancisB]

Hi enyce, I hope you feel better soon as I can relate to your story. I'm 36 now started first having issues with bechets when I was about 19. Took approximately 10 years to get a formal diagnosis, so your doing very well to get it identified quickly. I also get large ulcers up to 4cm in diameter, usually in my throat but also in my mouth and nose. I've tried many medications and have had varing levels of success. There is some great advice above about minimising refined sugars and processed foods. Good luck and feel better soon .

[MMatta7]

My late physician used to make a silver nitrate solution herself and dab it on my mouth ulcers. It did not hurt, she was actually burning the sores. The pain stopped immediately. Healing began, the sores healed quickly. Making medicine is against the law in the United States where I live. I wonder if the Bechets community can make noise and bring attention to this neglect. Apthous ulcers are not unique to Bechets people, I wonder who else gets them? Dentists know about them, and see them often. Something should and can be done about the neglect of this painful condition by the drug companies and the medical profession. Best of luck to you. All that medicine for a mouth sores that can be healed topically. Very sorry, I used to get dozens of mouth sores at a time. Awful.

[Hurtssogoodhanot]

sorry to hear, ask your doctor about "magic mouth wash" its a combo concoction thats made different for each person by prescription usually given to cancer patients to help with the numbing of the ulsars itll calm them down so you can eat which im past experiences for myself was half the immune issues my body needed more susstinence