I was given the diagnosis of Behcet's about 6 months ago, AFTER years of doctors visits, rounds of steroids, debilitating pain and fatigue, and just a general malaise for most of my young adult life. I've been on colchicine for about a year, which seems to help. I've still gotten flare ups, however, they have been mild in comparison. My dermatologist referred me to a rheumatologist, who gave me the diagnosis according to my presenting symptoms (extreme mouth, tongue, inner cheek, and throat ulcers, and newly developed skin ulcers while overseas last summer) and I tested positive for HLA-B51 gene. After a round of prednisone to cool off the most recent flare she started me on methotrexate.
I was completely hesitant to do so, and in retrospect I should've listened to my gut. My doctor explained, though, that Kaiser requires she basically do an elimination process of "approved" treatments, before moving on to the more experimental techniques--which is where she felt I'd find some solutions. I was essentially on a low-grade chemo therapy, which made me feel like I had the worst flu of my life for six weeks strait and caused the most horrific flare up. Since then, I've stayed on colchicine (but went from twice a day to three times a day) and won't be returning for any more "treatment" other than my refills. I've decided that my body, or my life, just can't handle the deleterious impact of more trial and error.
Lately I've been competent enough in the workings of my own mind-body to self-soothe myself when my ulcers do start rearing their ugly heads (like around that special time of month), versus the stress inducing high anxiety that would routinely add to my flare up.
SOMEHOW I've managed to circumvent any major flare ups for about five months or so. I've made some alterations to my lifestyle:
I've been prioritizing my sleep (and supplementing with tryptophan) , avoiding foods, stressors, and environmental factors that ignite a flare up; such as sharp foods, situations and people that add to stress levels, etc. Also, I've recently adopted a plant-based whole foods diet. I chose to do so after taking inventory on where in my life I could make improvements to my overall health. My eating was good, and I work out regularly, but I could do better. This decision seems to have made the largest difference. I'm still taking colchicine 1-2 times a day while my body adjusts to the diet, and I will stay on it for the time being. The greatest impact of adopting this eating style is I actually feel better. My energies, my sleep, my mood, everything seems to be moving towards homeostasis, and it's only been four weeks!
I'm wondering if anyone else has tried a vegan, plant-based whole foods diet, with success over flare ups? At the very least I know I'm avoiding inflammation, as evidenced by my body recovering from vigorous workouts with greater ease. It baffles me that doctors aren't having conversations about nutrition, and in fact, many of them don't even have the education to make recommendations or suggestions for nutritional changes. It's all about the drugs, drugs, drugs. But I digress.
It's still early, but I FEEl emotionally and mentally more clear. I'm hoping with this experiment I will find some lessoning of symptoms, and by giving my body a full round of proper nutrition, my body can heal itself even when this dis-ease comes through.
Cheers,
Monique
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MoniqueKahili
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WEll done re the diet as it not easy !!!! Yes I stick to a Alkaline/plant based diet as much as I can. It definitely helps. Just struggle sometimes as I feel i need more protein at times..... But yes being strict plant based over flare ups definitely helps. I am also gluten free which has helped to. Good luck with it all... It is not much fun but colchicine seems to control mine pretty well too. Trying to wean off everything else by using the plant based diet too. GOOD LUCK !!! And well done
YESSSS GIRL- your story resonates with me so much! dietary change was the changing factor for me. Now I do not do plant based, but i do whole foods, no processed foods over here either...aka anything from a box. I eat meat, good fats, and veggies. This disease ended up exasperating a sucrose intolerance for me, hence most fruits are out and it does count out some veggies too (so plant based is just not an option for me ever). So i do do not eat sugar, at all.
Sleep is NUMBER ONE- AVOIDING SHITTY PEOPLE IS ALSO NUMBER ONE! This disease really has put things into perspective for me. I dont sweat the small stuff, things that would give me anxiety, now make me laugh. When you've been put through the ringer- life is just not that bad sometimes.
I would recommend a probiotic to add into your diet. There is a correlation with bacteria and gut floras with regards to ulcers. I take acidophilus 2 billion cfu (specifically really good for lady bits) by NOW foods and nexabiotic 23 (a really nice multi strain), both available from amazon.
Click on my profile for my other responses to others- with regards to my dietary changes and how I handle oncoming ulcers. Its honestly not much different from you. I clean up the diet hard with high omega 3 and anti inflammatory foods, sleep sleep sleep, and reassess what made me stress in the first place.
Thanks for making me smile today Rooser1... I was reading the above post and figured this was up your alley and sure enough... a post from you!
Monique: Good for you. I assume you are likely West Coast US where Kaiser is a stronghold? If you have not already figured it out.. try and switch if you can. If not, you need to work within the confines of what you have. This means self educating (in my opinion). Coming here, asking whatever, reading. Also do your best to have a clear head when it comes to decisions about your body. Its yours!!!!! Not the Kaiser doctors! Fight as needed.. be strong.. (and tactful.) These are great words and often times not easy to follow. Do your best. I literally had a heated discussion with the stupid Kaiser doctor my first blood clot. She kept trying to send me away saying "oh you pulled a muscle. You will be fine in a few weeks". I would not leave and kept saying No this is not a pulled muscle. Finally got referred to the ultrasound place and sure enough blood clot.. The Kaiser hematologist I saw told me she .."saw patients who were actually sick". I guess two blood clots and debilitating headaches were not enough to qualify as sick. I digress as well...
Do not be shy asking here. There are many on here that have been afflicted for years and years with many years of trial and error.
Last thing I want to leave you with is stress. Do your absolute best to alleviate as much as possible. Take a good long look at life. It might be humbling but I do think helpful. Make adjustments, attitude changes, etc. Stress is a huge factor in this (my non medical opinion)
Good luck... SMILE if possible. You have a diagnosis.. on the road to mending..!!!
The camaraderie in Kaiser, and this diagnosis, really helps. It blows my mind just how much of a mixed bag their doctors are. Right now I'm faced with the dilemma of really liking my doctor, her sincerity is refreshing and I have been able to be open with her regarding my frustrations, and being completely distrusting of the system she's working in. I've stayed on Colchicine, and am debating giving Anakinra injections a try. I'm terrified of walking around immunosuppressed and having to adjust to yet another drug, and honestly, there's a huge part of me that believes it'll be another flop. I feel the best I can do is work towards radical acceptance of my health and do more of what does work, i.e., what you mentioned above.
Any thoughts or insights on trying the injections though?
I'm going to be using this website more often and hope to be more consistent with not being shy. I definitely have taken many looks at life and each time I've been able to shave off something that just doesn't serve me. So thank you again for that reminder.
Greetings rooser1, excuse my way late reply. I've neglected my email notifications, so here I am 9 months later. >.< I really appreciate your response and the gentle reminder to continue prioritizing my self care skills. I'm going to give the probiotic a try!
An update: I'm in the last stretch of my graduate program and began an internship about 6 months ago (I'm a MFT in training). With that, my stress levels sky rocketed and of course I got knocked out by a flare up, mere weeks after beginning my internship. That definitely caused me to check myself, again, and set some hard boundaries with my supervisors about my caseload. Thankfully, I've experienced nothing but compassion and understanding for my health issues and complete respect for what that means as far as work is concerned. I've stuck to my plant-based-whole-foods diet and have recently decided to do a trial run of eliminating wheat (I've had a morning ritual of toast and fruit since I was a kid). After my last big flare up in November I FINALLY committed to a meditative practice as well. It's truly incredible how impactful this practice has been for me. And although diet and meditation have not eradicated my disease, they've helped me in some fundamental ways: stress management, sleep, mood regulation, and pain tolerance (it's wild to think of how much I was resisting the pain I was in, with good reason of course). And yes, I definitely avoid shitty people like the plague!!
Way to go!! I also am a firm believer of 'you are what you eat'! I too have made drastic changes to my diet, not vegan but paleo. I still eat chicken and fish but no dairy, red meats, gluten or processed foods. I've educated myself about natural anti-inflammatory foods and how they help me and my body (we all have different reactions to meds and foods). The diet change has made a tremendous impact on my mental and physical health. Unfortunately my symptoms have not subsided and I still need medication to control them. I am 35 years old and was diagnosed with Behcet's last year. I've have been struggling with symptoms of this disease since childhood, so I've gone a long time untreated and it will take some time to regain control. What you shared has inspired me to keep pushing forward. THANK YOU!!! ☺
I'm glad what I shared resonated with you! The bodymind connection has by far been the best thing to tend to with this disease. Any updates on your symptoms? What medication are you currently on? I'm still hoping for the day I can get off medication, but for now, Colchicine seems to be the only thing that remotely helps to minimize the frequency of symptoms. Keep on pushing!
I totally agree what goes in comes out in some form. I am careful with what I eat I have a balanced diet. I drink mainly water I take manuka honey every day for my inflammation, I use natural products for washing. I only use organic hair products, skin products, natural toothpaste. If I put anything with chemicals on my skin, mouth I come out in ulcers. 99% of our food is organic of which we grow and any meat is nearly all home reared as well. I am a firm believer in natural products, doesn't work for everyone but the advantage has no side effects. I also use homeopathy for my ulcers Merc Sol 30c which really helps with all of them. I have had Behcet's for over 40 years I know what works for me and if I have to keep changing things so I keep well I do. I find that everything goes well then suddenly I am intolerant to milk so I just adapt, its listening to what your body is telling you once you listen makes things easier. All the best Biddy xx
I was just wondering about homeopathic solutions for oral ulcers. I'm going to look up Merc Sol 30c. Do you get skin ulcers as well? If so, does it help with those? I'd be happy to learn anything I can about pharmaceutical remedies for ulcers! Thank you for the reply, I hope this finds you well.
I have ulcers on my skin and down below. My consultant was amazed at how well the ones down below healed. I was taking my Merc Sol at the time. I am sure they also helped my skin ulcers which I get when I am tired and having a slight flare. I find that it’s not just about doing one thing it’s making sure that I don’t use anything but natural products on my skin, clothes and all of these things combined help me. Also it may not work for everyone but it has no side effects. It’s also about keeping the inside of you well I also take a probiotic every morning to keep my gut balanced. It really is trial and error with BD finding what works for you. All the best
This is almost exactly what I do, although I do now eat a bit of meat occasionally, otherwise I have an iron deficiency. I also eat fish. It has made a huge difference. Alcohol seems to be the worst offender these days so I tend to avoid it, which is hard! Sleep is number 1 and avoiding stress, which isn't always possible, especially emotional stress. So far, I'm not taking colchicine but it has been recommended.
Hi Monique! I was diagnosed over fifteen years ago but had had several years basically in remission until this past winter. Since then my story has been extremely similar to yours - After five or six medications I just don't want to be the doctor's experiment for a while and am trying the autoimmune protocol. If that doesn't work I might switch to a vegan diet. I share so many of your frustrations and concerns that these factors are not even on the doctors' radar! Wrote about it more in depth here. lyndseymedford.com/we-are-o...
The one best thing I ever did with my diet was going gluten-free. I don’t have celiac, but there is something about wheat and gluten that my body doesn’t like, and I was confined to laying flat in bed to maintain blood pressure before giving up gluten, and my doctors were not sure about my prognosis. Within a week of stopping gluten, I was up and around with decent enough energy to function normally. I later found out that I was mildly allergic to soybean oil and soy protein, so I stopped that too. The diet change bought me several years, and at the time I had not been diagnosed with Behçet’s. More recently, as the Behçet’s continued its destructive path, my pituitary failed and my pancreatic exocrine function stopped as well. Biopsy confirmed that an inflammatory condition (Behçet’s) was responsible for the failure, and with the disease actively damaging internal organs, I was put on Humira and Methotrexate. I am tolerating both, but there are days when I have to stay in bed in a cool, dark room to deal with the headache and flu-like symptoms that sometimes come with the treatment. Bottom line about diet: Zero gluten, zero red meat, zero eggs, zero dairy, zero soy. Trying to eliminate sugar. Taking Citracel 2-3x/day to keep digestive system working, as well as Creon to replace missing pancreatic enzymes. I’m fighting a cold at the moment, but otherwise I am maintaining and no longer declining. I’ll take it as a success so far!
Thank you for your reply! I've recently tossed out wheat on a trial basis. I don't typically eat much of it, but I do have a morning ritual involving toast. So we'll see! I'm glad to read that you've found a way to stop your health from declining. Any updates?
The Humira and methotrexate are helping a little bit, and I seem to be able to manage my inoperative endocrine system with a bit more ease. Overall, I think there is hope that I’ll eventually feel better. How are you feeling?
I completely understand. It took me quite some time to find solutions for managing the psychological and emotional impact of my symptoms and diagnosis. For me, support from those closest to me and learning how to take care of my mental health have been extremely beneficial. It was actually my brother in law that persuaded me to jump on this website and seek some support/knowledge around my diagnosis. All I can say is be good to you and keep pushing through to find a system of day-to-day living that contributes to your well-being.
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