Sticky Blood-Hughes Syndrome Support
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Linseed oil capsules/ seeds

A friend of mine who also has severe arthritis told me the other day that she swears that taking Linseed oil capsules has changed her life,and she had passed this on to another friend who has since fed back to her that already her pain has lessened.

Are we, APS patients, allowed to take Linseeds, or linseed oil in capsules? There is another name for it but I cannot remember - omega oils but Linseed /flax seed is the vegetarian option?Is it worth a try or do I need to avoid.

I do put it in the bread that I make. I have a bread machine so I do not manually make bread;it just takes five minutes to put the ingredients together, in the right order, so the yeast and the liquid do not make contact. I bought this bread machine three years ago because of questionable coeliac disease, and I have to go yet again for another test, because I was on a gluten free diet when I was last tested. Coeliac disease runs in the family, too. I did lose over four stone in weight in five months when I stopped eating wheat. I am seeing the renal dietitian next week but have not had the test yet. I did not do any exercise either except for physiotherapy.

9 Replies

Hi hon,

I don't personally take anything without speaking to my doctor, some of the meds we take can have interactions, so always talk with gp or pharmacist.

My last meds review with pharmacist, she said you do know all these drugs react with each other don't you!!! Erm yes says I, that's why I check with you first!!

Would be interested to hear what your gp and others have to say, anything that helps has to be worth looking into!

Gentle hugs love Sheena xxxx :-) :-) :-)


It is the policy of my HOSPITAL to have the patient check ALL CURRENT DRUGS INCLUDING HOMEOPATHIC, OVER THE COUNTER DRUGS (including your vitamins and minerals). Your medical chart is corrected, verified and signed by YOU, the patient,... AFTER EACH AND EVERY ENCOUNTER WITH THE HOSPITAL OR IT'S DOCTORS. The GP's don't actually check this. The Hospital Pharmacy has a computer program as new drugs are on the market every day,,,every hour! It is checked before the doctor signs off.

A handy second check is your pharmacy. I go to Walgreens because they carry a similar policy in that any new drug you are prescribed is checked against what you are already taking and if it interacts Walgreens call the physician and recommends another drug that will accomplish the same thing without interaction. It is one of the reasons this hospital has very low drug interaction rates. They have caught 3/4 over the years with me as I have a very, very high allergy list. This, however, is standard practice for any and all patients at my hospital.



Well as you can see from this comprehensive article of the product, if you were a normal healthy person taking NO other medications, then there may be a place for this in the diet. However, if you read of all the contraindications and possible interactions etc etc I think as has been said above it is one of those products that needs to be discussed with somebody who has medical knowledge of all your conditions and all your medications.

They would need to know what you wanted to take and how much of it in order to be able to give you an informed answer.


These seeds and oils provide essential fat acids which we should be getting from our diet anyway. Any change in diet can effect medications particularly warfare and supplements often supply higher quantities than you would get from seeds. It is worth reading about optimal ways to get the right balance of these fats. Patrick Halford and Udo. Erasmus. have written about this. Patrick Halford recommend s a mixture of different seeds. I would discuss it with your pharmacist who will look up contradictions for you. I would start with food sources ie seeds and start with small amounts increasing gradually . One problem with doctors ids that they have very little training in nutrition and can sometimes just advise against supplements. Fortunately out Hughes specialists in London.are much more open . Dr Khamashta was happy for me to take whatever works so long as I check out contradictions first. These fats are called essential fatty acids because they are essential. They are helpful for many conditions because most of us are not eating enough of them in our diets. I hope this is helpful. Good luck. Ann


Thank you Anne,

I have been putting sunflower, sesame and linseed seeds in the bread I bake in my bread machine.. I will not take additional supplements without asking first.

My friend does not have Hughes but swears that her arthritis is much improved since taking Linseed/ Flaxseed oil capsules. She usually has steroid injections but has exchanged them for linseed/flaxseed supplements at present because it is working for her and is a natural ingredient.

I have arthritis too, but knowing now that you can get Joint pain with Hughes too would not know what it arthritis and what is Hughes except that they have evidence on MRI scans of severe arthritis. My spine and pelvis are the worst, last year I had a total knee replacement and a couple of years before that my right shoulder arthritis was operated on. The shoulder specialist could not believe the amount of movement in my shoulder considering the severity of my arthritis. This is because I am hypermobile, is this a Hughes condition too? I will need my knee doing again in approximately ten years time because I am younger than the usual population who have knee joints so it means it will need to be done again. the pain in my body is so unbearable, as you must know yourself but I can no longer cope with it. I am on morphine as well as tramadol, 30/500 solpadol two four times a day which my Pain specialist said were all opiods, as well as Diazepam for muscle spasms , Anaesthetic patches etc etc.. but none ever get rid of the pain. they won't give me steroids any more because the last one I had a stroke a week later and anyway, I only had pain relief for a maximum of three weeks when they should last for months so the pain specialist said it was not worth it. I take 18 different tablets for other conditions. But most of all I want to lessen the pain so I can have a good sleep but nothing works any more. I have just got back from the Pain Psychologist whose aim is to make me accept the pain and to find ways of getting it under control but I am having EMDR therapy first as well as pain therapy. It is difficult to describe pain to someone who has no experience.

So I thought Linseed oil, give it a go, but I will ask my haematologist or the Warfarin clinic on Monday.



Very interesting what you say about having a stroke after having a steroid injection. Did they give you any proof that is what caused the stroke or are they just being cautious? I cant find any evidence of steroids causing Strokes but Id like to know if you have any as I too had one a week after facet joint injections!


Yes, I had steroid injections under X-ray in an operating theatre, they were facet joint injections.Did you have to lie on your front over a pillow? I also have then in my sacroiliac joint.

My spine problem is called severe central canal stenosis secondary to posterior disc bulges at L3/4 and L4/5. So basically my spinal cord is severely narrowed in two places and I also have severe arthritis which they inially said they would operate on, well another city would perform the operation but they said because of blood, health and particularly because the spinal cord was involved that they were not going to attempt the operation Spinal stenosis mainly affects the elderly or when you have jumped or fallen from a great height. it can be in different places, mine is central, all over. Basically they are going to have to do something because I can no longer cope with the pain. I am maxed out on painkillers.


Sorry, the reply was premature.

So,you also had a stroke a week later? It must be a dangerous method for Hughes patients. Once time I went for an injection i had a stroke preceding the injections so when I eventually went for the injections he refused to do them. The last time when I had a stroke a week later, I cannot remember what had happened that week so cannot comment on what caused the stroke but it was a week after the injection, I was with a friend so she had rang NHS Direct and they said go to A+E, she's had a stroke. It progressed over a couple of hours, she said I was slurring my words, etc...


Hi, I was first recommended to take linseeds through my second pregnancy after the first had failed and i was so ill with my digestive tract through it i was desperate not to have a flare up again like that(they put it down to ibs in the end) looking back that was when the aps really kicked in with me - i got worse and worse after that time - pregnancy had triggered it. I take a spoonful but mix it iwth water and leave it a while to go a bit like jelly so the enzymes are broken down a bit so we can digest it better. I swear by it for keeping you 'regular' and so if it can help so well from the inside then surely theres more health benefits to be had too!! I add it to my bread maker when it beeps after mixing - and the seeds are safe heated up to a ridiculous heat that making bread wouldnt come near to just in case you read any bumf out there on carcogenics being release when heating these and oils etc etc.... My personal thoughts that all these healthy nuts seeds etc have to help somewhat as the meditteranean diet has proved to be a healthier way to live,and with the rise of dementia and our particular susceptibilty to neuro involvement it has to help. Anyway I dont think theres a problem with warfarin but I would get your levels checked out a few days after changing any part of your diet - and these fatty acids have been touted for a long time to help with joints etc - happy baking xx


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