What causes a flare up?

[Arcmacjac]

Hi I'm new... just diagnosed with BD after a YEAR of seeing 14 different doctors and countless diagnoses. Until finally an oral surgeon said BD. If this is what I have to live with for the rest of my life I just wonder what causes a flare up for most ppl? Do the mouth sores ever go away? I have not been able to eat solid food in 5 months. My gums are raw and bleed at a touch. I have ulcers on the cheeks and my tongue is raw and bawled. I have the skin issues (acne-like bumps). And skin lesions in other places. Any advice tips or ideas or comfort is welcome. I'm so scared.

[billi]

Please don't be afraid. Yes BD is an autoimmune disease and will never completely go away. I have suffered with it for over 30 years and it took more than twelve years to get a diagnosis but

still managed with my life. It's a case of finding the best doctor and then getting access to the best meds for you. Usually the primary career for BD is a rheumatologist who will transfer you to other consultants as and when needed usually, dermatologists, ophthalmologists, neurologists etc. There has been so much improvement with research, knowledge no treatments in the last 15 years including this site. You don't say where you are from but in the UK we also have three centres of Excellence for BD sufferers. It will seem daunting at first but luckily you've had a quick diagnosis and so will receive the right treatment. For mouth, nose, vagina, anus and penis ulcers many of us use CLENIL inhalers and sprays.. a couple of puffs of inhaler into the mouth, swish around and then blow out, do not swallow, up to 5 times daily, reducing as they improve. You can use this fir down below also. The spray is for the nose just one in each nostril 2/3times a day rducing again with improvement. These items are best used at the very onset of a flare and sometimes even stop a flare . Flares come and go and can last a couple of weeks or months. You should also be on the stronger meds just now a good one for lots of us is Colchicine but we all react differently to meds and what some do well with, others dont. Also we may have an allergy to some meds so it is trial and error in the beginning.

Best advice, be strong, stay positive, accept that there will be some life changes but that doesn't mean you can't still live a full life.

Hope this helps and if you need more info or just a chat message me privately.

All the best

Billi

[Arcmacjac]

Thank you Billi. I am from the US. So I will always have mouth sores?? Or do those heal up with medication and come back during a flare up? I guess I don't get what ppl mean by flare up. I don't get to see my regular doctor til this Monday for her to give me meds. Right now I just have magic mouth wash and A mouth wash with steroids and pain meds. So I'm pretty miserable.

[duke22 in reply to Arcmacjac]

I don't no if u will always have mouth ulcers but we do have access to laser dentistry that works and expensive. B careful u go to someone that knows what they r doing

[sam0511]

You don't say if you have any other symptoms. I am taking 150mg of Azathioprine daily. I have been free from symptoms for a while now and feel well. I hope you get some effective treatment soon.

[Jaxxi]

Hi there!

It seems that patterns and triggers for flares differ from person to person. Some of us have fewer or more manageable symptoms - or even no symptoms - some of the time, interspersed with periods when the illness 'flares' and is much worse. Some people seem to be constantly in flare, ie their symptoms are severe and do not go away. I have had BD for 50 years and during that period I have had remissions that lasted years when I had very few symptoms, and spells when I was in flare for up to 3 years at a stretch. At present my flares come every few months, and generally don't last longer than a week or two at most.

BD is also known as an 'autoinflammatory' disease. The trigger - for me, anyway - is inflammation. This can be caused by lots of things: other illnesses, injuries, insect bites, hay fever, surgery, over-exercising, eating foods that disagree with me, drugs and even certain detergents in shampoos and toothpastes that bring me out in scalp sores and ulcers.

In my case, the triggering inflammation can be internal - like gut problems caused by eating too much gluten, or external, like a skin rash brought on by a shower gel. Wherever the inflammation is, there is always the possibility that it will turn into a flare if I do not manage it carefully. So, what starts as a head cold can set off an inflammatory cascade or 'domino effect' that ends up with achy joints, ulcers above and below, profound fatigue, lots of spots and rashes, blurry eyes and horrible headaches - and these can last for weeks if I am not very careful. 'Managing it' for me means getting plenty of rest and good sleep, eating right, staying away from drugs like alcohol, caffeine and painkillers, exercising just enough and trying to stay out of stressful and anxiety-provoking situations. Easier said than done, I know. I also use remedies that are anti-inflammatory, like mouthwashes and sprays for the ulcers, ice packs for sprains and injuries, joint-calming baths and herbal tinctures like calendula to soothe and heal rashes and skin lesions.

I must stress that this is my own approach that I have worked up over a lifetime: I am 59 now and it's taken a while to get it right!

Many BD sufferers respond really well to drugs - and of course, many people need them to control the disease, especially those whose eyesight or brain is affected. Drugs are also very helpful for those with full-time jobs and families, who just have to keep going no matter what. Colchicine is often the first drug doctors try after BD is diagnosed, and can be really, really helpful for ulcers and skin lesions.

Please don't be scared! I went undiagnosed most of my life, and was quite ill at times, but I still had a wonderful active life, lived in exotic places, raised 6 kids, had a good career and lots of adventures. It is very much a matter of finding out what works for you, and your doctors will help you with that. It might take a while to puzzle out what works best in your case, but there is much you can do for yourself meanwhile.

Keep coming back here - there is a lot of understanding and expertise on here. It is just a few years since I was diagnosed and it is a bit frightening, but believe me it is much much better knowing what you're dealing with than not knowing.

xx J xx

PS I find using toothpastes and shampoos without SLS / SLES in them reduces ulcers and skin lesions.

[Arcmacjac in reply to Jaxxi]

Wow thank you so much for sharing. I too have cut out ALL product with SLS. And done so much research on this I feel burnt out! Thank you for the support and kindness. I go Monday to finally get some meds. I KNOW mine is triggered by stress. Also maybe sugar I am now learning.

[Jaxxi in reply to Arcmacjac]

Yep, I find sugar inflammatory too. Foods that trigger my GI symptoms are: gluten, nightshades and large amounts of empty carbs (like sugar, maize starch, white rice). Also eggs and fish to some extent if I overdo them. Overindulging in fatty foods give me a different set of pains in the liver / gallstone / pancreas area (been checked for gallstones and none there).

So I eat mostly vegan with a little bit of oily fish and the odd egg here and there. Luckily I am a huge fan of fruits, veggies, tofu, quorn and beans, and my diet is surprisingly varied. I miss tomatoes, peppers, potatoes, eggplant and chilli, but I've found lots of things to substitute for them, and nowadays I can have a cheeky nibble now and then without problems. Just not vindaloo or ratatouille!

You'd think I'd be sooo skinny and fit on a diet like that but noooo I keep inventing ways to cook the things I love - over the past year I have been trying out different flours like sorghum, teff, buckwheat and bean flours for breads and pastries, as I can't eat the gluten free ones from the shops (too much maize starch / potato flour). It's very satisfying (says my tum).

No need for thanks, we are all in this together!

[Dan_NY]

By "flare up" people mean that your body is showing signs of illness. For example when a flare happens you may get ulcers. Or your head may pound, or your joints may swell. When the flare is over, your body goes back to somewhat normal. Headaches go away, ulcers go away. Your body then does not show signs of illness. Basically a flare can be thought of as a period of time in which symptoms occur. Flare may last quite some time, or it may be short. It seems like you are in a long lasting flare and need some meds to help minimize it. What may trigger a flare up?? That is somewhat dependent on each person but mostly I think everyone can agree that stress and how you manage it is a huge factor. Others find certain foods, or certain behaviors.

Will you always have ulcers? Many people find that the modern meds can control this and find that no, ulcers are not every day events. Hopefully they will have positive effect on you as well.

One thing I would say is look at what is happening around you in your life. Large amounts of stress? If so.. start trying to handle it better. How to do this is a very good question. Its time to look around and see if you can make some positive changes. This cannot hurt and can potentially help. Being afraid and scared is normal but its also potentially adding to your condition. Think about it.. You get ulcers and other issues. You get highly stressed, nervous, scared etc. This affects your body and even more ulcers and even worse symptoms begin. You become even more nervous, more scared and your body gets worse. This is a cycle and if this is in fact what you are going through then this needs to be broken. Do your absolute best to relax. Im not sure if this is your situation, but it seemed to be a pattern with me. Keep in mind I am not a doctor of any sort, just a concerned individual who has been through this. I actually think I have had this since age 6 or sometime way way back then. I have been mostly symptom/flare free the last bunch of years. Also off all meds. You need to see your doctor. Colchicine apparently works well for some people as mentioned.

Sadly the last thing to mention here is that most doctors do not know about behects. You will likely need to help guide the doctor. Do your research and be ready to discuss why you need certain meds.

Best of luck... You are not alone...

[Arcmacjac in reply to Dan_NY]

Thank you for the kind words and helpful insight. Yes stress for me. 2016 was the absolute worst year of my life. I'm 31 and I've never been thru so much negative crap before. Thank you for explaining "flare up" that's what I thought.

[Linderella]

Sometimes Tums antacid pill held on the ulcer until the pill melts can help with the pain.

[deus777]

Ulcers can drive flare ups. It's best to stay on top of them.

Avoid crackers, crisps, chips, popcorn and foods that are abrasive in the mouth. Eliminate alcohol and chillies. Search for magic mouth wash on the forum (a solution of steroid, anti-fungal and antibiotic), which helps eliminate mouth ulcers for many people. Replace as many things as you can find with hypo-allergenic equivalents. Try loose clothing that doesn't rub against you.

For ulcers down below stay on top of them with steroid creams or Elidel cream (this works miracles, but has very poor absorption needs to be massaged in or it doesn't work). There are varying strength steroids creams, get your doctor to work usage through with you. I replaced toilet paper with aloe vera baby wipes.

Try daily hyaluronic acid supplements and glucosamine/chondroitin tablets to control joint inflammation. I find I need more than the recommended dose. I find these take about 2 weeks to notice any difference. Also a daily antihistamine like loratadine seems to helps.

Carafate is good for intestinal type ulcers. (Typically pain on lower right side of stomach).

For the brain fog I use a daily souvenaid drink, I found after a few months the fog was noticeably reduced.

I use special sterile Eye wipes twice a day and lubricating drops as required.

Avoid stressful physical and emotional situations. Avoid excessive heat and abrasion.

With the above regime, I have been able to dramatically reduce my steroid usage and have so far avoided the serious immune suppressants.

Good luck

[Sunset]

Merhaba Arcmacjac; Behçet hastalığının nedeni bilinmiyor ve hastalığı tetikleyen şeyleri belirleyecekler.

[quro]

Stress for sure triggers my symptoms. I just went through this super intense group dynamic conference (which ended up with someone accusing me of faking my disease...what a lovely lady she was) and by the last day I was hobbling on a cane with every joint full of arthralgia and a god forsaken migraine. Avoiding stress can be difficult sometimes so it's good to find something that relaxes you so you can minimize flare ups. The dermatologist can prescribe some topical steroids to help with the acne- like bumps. But truth be told, no one is 100% sure what triggers a flare up, so perhaps jot down what you had been doing the week before you had one and over time perhaps you'll see a pattern. So sorry you've been diagnosed with BD but welcome to the group!

[UKADMIN Partner Behcet's Syndrome Society]

Hi Arcmacjac, Sorry to read of the pain you are in with your mouth ulcers and skin. You can get further information from the American Behcet's Disease Association here: behcets.com/site/c.8oIJJRPs... Also this is a link to our factsheet on Mouth Ulcers and hope these help. Best wishes to you. behcets.org.uk/wp-content/u...