Hi there Community. My son who is 25 has been diagnosed just last summer as having Behcets .Having read about a successful non medical small trial (of 3 people) we are now in the process of trialling for ourselves : Omega 3 fatty acid via linseed/flaxseed oil ( as we are vegetarian we dont do fish oil) and hemp oil ( the food grade not the getting high stuff!) for its gammalinoleic acid ( powerful antiinflammatory with some proven medical track record). Omega 3 are reckoned to be routinely deficient in modern diet and being indicated for lots of conditions so we decided it was good to give a go. Has anyone on here tried these oils to help with their Behcets? Since taking the oils for a few weeks my son had come off his colchicine and not gone into a flare so we are cautiously wondering if this is in fact truly doing something! It could be coincidence but he had been in a low grade flare for months before while on the Colchicine so certainly worth monitoring. There are no bad side effects and many benefits to many areas of the body and brain/nervous system etc to these two oils so I would be really happy to share experiences with other folk who have done this or with anyone else who wanted to join us in our little one man experimental trial.
Liz and Jamie
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lizcook
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My son is doing very well on the oils much to my delight and amazement. He is off the the colchicine at the moment and hasnt had a flare up since taking them. He has been taking hemp and linseed ( flaxseed0 together as my hunch was that the gammalinolenic in the hemp was the powerful antiinflammatory he needed and that omega 3 has been flagged as huge deficiency thing in modern diets and has implications in so many areas .. both with symptoms of deficiency and in improving things when it is added. To make it easy for him to comply ( 25 year old , busy, carpenter,not particularly into food prep etc) I just bought good quality capsules of both ( vegetarian in his case) and he has been taking what it says on the label as recommended intake. So not a very scientific trial! His consultant read the stuff I tool in and was very supportive. I cant believe this improvement and keep expecting him to say he has a pustule forming or an ulcer coming or pains starting but miraculously nothing for a few months now. It can certainly do no harm to add these things as they are basically a food not a medicine so I hope this helps you a bit.
Wonderful news! I've started taking Omega 3 as well (along with my very effective colchicine) because I see no harm in adding it and, hopefully, preventing worse symptoms from developing. So happy to hear your son is doing so well!
I myseif wouldn't trust taking my daughter off all her meds to trial Omega 3, in case it didn't work and would take a long time for the meds to get back in her system, it's not possible. Good luck on your trial though and hope it works out for your son x
yes I totally get that , we didnt come off the meds but put the oil in alongside and noticed symptoms that were still there even with the meds ( colchicine seems to keep Jamie in a state of low grade flare rather than periods of being o.k and then a chronic flare without it). He has been told to use colchicine as needed so it was easy for us to drop it off, continue the oils and see what happens . If the sypmtoms come back he can go straight back on to the colchicine. This disease is so random and inconsisitent and tricky and of course needs a ton more research. Anyway very good luck to you and there would be totally only benefits in adding the two "good oils" to your daughter's ( or any "normally healthy persons diet ) diet alongside the meds as a support thing anyway and just see if anything changes. I dont believe this needs medical approval as you are basically adding a food stuff but no harm in double checking with your doctor. There is no medical evidence it works so the doctors cant really offer suggestions on it . As say it is really early days for us in seeing what this might do and it could all just be coincidence! Good luck ot you and yours
YES! Ive been pushing a sugarfree (inflammatory) anti inflammatory diet (salmon (omega 3's) nuts good fats etc) on everyone here. I truly believe it is what turned my life around.
I eat meats/seafoods, good fats, and actual vegetables. That's it. Nothing from a box and no sugar. Not even fruit. Never felt better. I actually have been thinking about discontinuing my half dose of colcrys, but just am not ready for that mentally yet.
As for your other point with managing this disease with your son (28 F here myself) Stress and lack of proper sleep are my triggers. If i sleep poorly for more than 2 days in a row- I get ulcers and joint pain off the bat. If I am stressed (and its usually people) I will get ulcers within a few hours. I have managed my stress VERY effectively through: communicating clearly with my partner, exercise (heavy weights) and making sure I get adequate sleep. I keep a very open social schedule with very very little social engagements. If i go out too much and "overdo it" Ill get myself tangled up in a small flare.
Someone else here has posted their insights about arachidonic acid which in turn has a role with omega 6's and inflammation. Something else to look in, just saying.
Please feel free to look at my other posts from my profile as I have posted what I eat and I am sure you can find similarities between your diets and mine!
awesome post and reply thanks so much. And very encouraging so will pass on to my son His main presenting things are also joint pains and ulcers/pustules so could be another good boost to him to look at all the things you have.! Thanks again
This is almost exactly what I do to manage my behcet's as well and can totally vouch for an anti-inflammatory diet (cutting out refined sugar is key-I do eat fruit). The only thing I would add is that I try to only have red meat once a week as red meat is actually quite inflammatory (especially pork). I stopped eating it completely for 9 months but then got anaemic, so now have it once a week which is fine for me. I've found over time that knowing my stress triggers really helps with avoiding flares and getting enough sleep.
My son is doing very well on the oils much to my delight and amazement. He is off the the colchicine at the moment and hasnt had a flare up since taking them. He has been taking hemp and linseed ( flaxseed0 together as my hunch was that the gammalinolenic in the hemp was the powerful antiinflammatory he needed and that omega 3 has been flagged as huge deficiency thing in modern diets and has implications in so many areas .. both with symptoms of deficiency and in improving things when it is added. To make it easy for him to comply ( 25 year old , busy, carpenter,not particularly into food prep etc) I just bought good quality capsules of both ( vegetarian in his case) and he has been taking what it says on the label as recommended intake. So not a very scientific trial! His consultant read the stuff I tool in and was very supportive. I cant believe this improvement and keep expecting him to say he has a pustule forming or an ulcer coming or pains starting but miraculously nothing for a few months now. It can certainly do no harm to add these things as they are basically a food not a medicine so I hope this helps you a bit.
Dear Liz and Jamie, all I can say if it's working don't change and possibly don't question, WHY. For many of us it can be something we have eliminated from our diet, reducing the amount of stressed in our lives or more sleep. Enjoy the moment and I hope it continues for years to come. I have a daily Omega 3 intake but no real change, although I think I have less wrinkles, HA. xx
My son is doing very well on the oils much to my delight and amazement. He is off the the colchicine at the moment and hasnt had a flare up since taking them. He has been taking hemp and linseed ( flaxseed0 together as my hunch was that the gammalinolenic in the hemp was the powerful antiinflammatory he needed and that omega 3 has been flagged as huge deficiency thing in modern diets and has implications in so many areas .. both with symptoms of deficiency and in improving things when it is added. To make it easy for him to comply ( 25 year old , busy, carpenter,not particularly into food prep etc) I just bought good quality capsules of both ( vegetarian in his case) and he has been taking what it says on the label as recommended intake. So not a very scientific trial! His consultant read the stuff I tool in and was very supportive. I cant believe this improvement and keep expecting him to say he has a pustule forming or an ulcer coming or pains starting but miraculously nothing for a few months now. It can certainly do no harm to add these things as they are basically a food not a medicine so I hope this helps you a bit.
Yes, my experience is similar - omega 3 supplements help control the symptoms. I have neuro BD which is supposed to respond only to heavy meds but mine responds to pretty much anything that dampens the immune system including vitamin D and curcuma concentrate (juice). The strange part for me is that now that the flare is gone, whenever I take the above supplements I feel somewhat worse than if I did not take anything (like they lower the immune system and sort of activate it again). Apart from this, I stay away from caffeine which can start a mini flare for me from the first sip. Avoiding processed foods, eating sugar and bread in reasonable amounts and getting enough sleep help quite a bit. Good luck to your son!
Thanks so much and that it really encouraging that we may be on the right track ( always a thought it could be coincidence with something as unknown and unpredicatable as this) And interesting how almost "too much of a good thing" sends you back into symptoms. The immune system is such a complicated mechanism!! . He needs to get off the coffee too and cigarettes as top priority, - totally essential in a vascular inflammatory condition ( and he knows it of course and is getting his head round the stopping smoking and trying to quit but it is really hard on top of everything else so not being too hard on himself over not managing yet Being kind and gentle on yourselves when you are managing such a horrid disease feels as important as anything. My son is 25 and a carpenter and gets really upset when he cant work or a cut gives him the pustules and his joints are in pain. I am just having an offload now on this forum but it is horrid as a mum to see the suffering and all of those who post on here who seem to have many more symptoms than him. We had the all clear on the eyes a couple of weeks ago and that made me cry with relief. For now anyway! We are going to then Behcets syndrome society convention in the U.K in October so if anyone else is going it would be amazing to meet you ! In the meantime.... off loading rant over!... keep on with he hemp and linseed oils and see how it goes. Still no flare up ( although he has been incredibly tired and not hungry which seems to be at the start of one... but not escalated as of yet.... fingers crossed )
With love and thanks for posting and listening/reading. I hope your day goes well and pain/symptom free today
I know this is an older post, but I just wanted to say that I did the same thing after reading about that study with 3 Behcet’s patients and fish oil. It was shortly after my diagnosis and I was scouring for anything natural that could help me to avoid going on any medication that could have other side effects. I had been suffering for years, and the last year had been the worst with being in a constant flare for 3 out of four weeks per month. I could count the days between flares on one hand. My symptoms were mostly genital ulcers, but I also had eye issues sporadically, skin issues, joint pains and a few stomach ulcers as well. I started with the anti-inflammatory paleo diet (auto-immune protocol), which helped a little but when I started taking high levels of fish oil and co-q 10 my flares dropped in intensity down to a level I can deal with. It’s been over a year and I never had to take any other medications, aside from some topical steroids occasionally for skin eruptions. But my ulcers went from severe and debilitating pain lasting for weeks (sometimes months) at a time, to now only a few days at a time with minor irritation. Obviously I can’t say it will have the same effect on everyone but the fish oil I really believed is the factor that changed my life and helps my body deal with Behcet’s. I started out very high dose in be first few months but then dropped down and take less for maintenance. Anyway, it’s good to hear that others have had the same good results, I recommend trying it, it can’t hurt unless you are sensitive/allergic for some reason. I make sure to get high quality fish oil with no mercury.
Absolutely brilliant news.!! Thanks so much for sharing it! I really think we are on to something with the Omega 3s and our consultant is definitely curious to see what happens with my son. So far no flares at all and no meds since he started linseed/flaxseed oil. Except when he drops them off and a flare starts and so he re-starts and the flare receeds! He has done this loop at least a dozen times : enought to prove to us that for him at least the omega 3 rich oil is doing the business! Very good luck to you and thanks again for sharing. Liz ( and Jamie)
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