Hi there , My son has Behcets and was prescribed colchicine . He was diagnosed finally about 14 months ago at age 25 having had symptoms all his life.
Just to share our experience ( which we started somewhere further back on here) - we are having astonishingly good results with omega 3 oils. We are vegetarian so he is taking linseed/flaxseed capsules ( where non- vegetarians could use fish oils ). I suggested this to him about 6 months ago and so he started on the oil with our consultant 's( Dr Kaldhoun Chaabo) blessing ( as it is a food supplement and not medicine he was happy for us to try in addition and alongside the medication ) . Really quite extraordinary results have followed. Within a few weeks my son came off the colchicine as he didnt feel any sign of the symptoms and continued with the oils. He has stayed off the colchicine and he hasn't had a flare since!! And these were regular occurences . What has convinced us the oils are working is that when he feels good and gets busy he stops taking them daily and his joints begin to ache and maybe the odd mouth ulcer starts again. Then he resumes the daily oils and the flare drops back. This has happened enough times for us to know there is 100% correlation. There are no downsides to taking the oil ( in fact my work in nutrition informs me that most of us could benefit) and they are only what is readily available on the high street in supermarkets or chemists so they are totally safe to use as per the packaging instructions. I hope this is useful and if it encourages anyone else to give them a try and they help then that would be awesome. Our consultant is definitely interested and supporting what we are doing and is just going to keep watching and monitoring my son's progress. Of course there will be no trials on this as the oils are not pharmaceutical products so there will be no money to be made to make it worth investing in research but I have to say I am now totally convinced we have a useful thing ,(at least for our one man experiment !,) to add to the mix in managing this horrid condition. We will keep updating .
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lizcook
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Jamie takes the capsules bought over the counter at the chemist/pharmacist or at any of the supermarkets ( we are u.k ). He could use straight oil but his lifestyle means he is better just with a pot of capsules. He takes them as they say on the pot... one or two capsules a day usually He is also ( and he wont mind me saying this!) a bit non compliant with taking them if he gets busy or distracted (He is 26 and lives a full on life and moves around a lot) . So daily amounts vary and some days he forgets for a couple of days.Which has been a good thing in itself in a way as then the flares begin to start... so he takes the oils and lo and behold the flare recedes. We are now totally 100% convinced that for him this is controlling his symptoms. And no medication at all. Our consultant is raising a very interested eyebrow and has read some research I dug out that supports what we are finding. It would be so amazing if something so easy , relatively cheap and overall good for everyone to add to their diet could actually be a source of relief for Behcets.! Minis lecture over.!!! really hope it helps you Ronald. Keep us updated? All the best
I have been in a massive flare for over 2 months, hospitalised on 3 separate occasions, had numerous doses of IV steroids and extra inflectra unfusions and my eyes are still suffering so i am willing to give anything a shot!.. so just linseed/flaxseed capsules from health shop? (I m in uk). Thanks for post and hope things continue well for your son. This is a bitch of a disease!
Yes that is is right.. we get them from Boots or Sainsbury's etc. You can use fish oil ones if you are not vegetarian too. It is also worth adding hemp oil ( just nutritional grade from health food shops or even some supermarkets and follow the daily recommendation on the bottle ) as it has gammalinoliec acid which has a powerful anti inflammatory element an has had proved results now with other inflammatory conditions such as exczema/asthma and rheumatism/arthritis. It is another thing that has no adverse effects and safe just to take as a food! so strongly recommend that to try.
Jamie started on that in conjunction but has dropped the hemp as he was doing very well. Good luck to you . Liz
Thank you for posting this! I am considering getting off colcrys next year as i have been managing my symptoms REALLY WELL with an anti inflammatory, sugar free diet. Every time I get issues, I up the salmon and other omega 3's in my diet for the week and it works quickly! I actually JUST saw flaxseed capsules in the pharmacy last night (with the whole OMEGA 3 all over it) and it made me ponder about adding them into my diet. Now, after seeing this post, I am for sure getting them as this seems way too coincidental!
Thank you for posting! So happy your son is managing well.
Your original post inspired me and I've been taking fish oil capsules as well! I am staying on colchicine for now, but I think they both help and I agree that the oil can't hurt. My doctor said worst case scenario my hair gets softer haha. Thanks for the info!!
Since reading this I went out and bought some Krill oil tablets, and am convinced there has been a big improvement, in that I feel a lot more normal. I had a very busy week working, long days and late nights which would have normally left me absolutely exhausted and set off a flare, but I coped and felt ok.
I did cut out coffee a couple of weeks before staring the fish oil which may also have helped. I only had one strong cup in the morning, and only sometimes an extra cup in the afternoon.
I have been trying this after reading your post. I had a huge amount of foot pain on a regular basis and this does seem to have nearly gone. I have also felt so much brighter when I wake up in the morning not everyday but more than I used too. I am also taking Evening Primrose oil 1000mg a day for breast pain that is also helping. I will keep going with this and I will introduce the hemp oil as well. Hope your son is still well.
Oh yes please do. My son didnt take them for a couple of months ( as he felt so much better and didnt want to go on taking something without knowing if he needed to) Voila ...a terrible flare and still in the aftermath now.... weeks of of it and so at least we know the omega 3 oils were 100% doing something!
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weeks of of it and so at least we know the omega 3 oils were 100% doing something!
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