Sticky Blood-Hughes Syndrome Support

warfarin and alternative medicine

Hi,

I was diagnosed with APS 10 year ago and three weeks ago got blood clots in my lungs and I am now on warfarin and the doctor said it will probably be like that for life. I prefer not to take prescription drugs' but understand the importance of warfarin at this point in time. I was taking ultraclean DHEA for my back, I have spondolitis, and it is really effective in cutting down the pain and keeping me active but I have been told I cant take it anymore. do any of you take fish oil or know how much warfarin is affected by it ?

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I am giving an answer from a personal point of view ONLY.

When I was put on warfarin it was following a period of some really scary incidents which do seem to have ceased since being on warfarin. I too was told it was for life. I didn't question it much at the time.

But over the years with all the dos and donts with warfarin I have started to question things.

I want a drug to work with me and my dietary needs and not have to bow to the requirements of a drug.

I know you can't forget A PS but the body needs a full complement of vitamins and minerals which is not aided by having to restrict certain foodstuffs.

I can't take the newer drugs due to poor kidney function.

I decided it was better for me to eat as my body needed. This does however cause big swings in INR and requires much more regular testing which is something that the anti coag units try to avoid.

I do take a few things that I feel I need such as k2 (not K), krill, vitamin c, d3. I believe that the vit c sometimes contributes to swings as I bump the dose with every sniffle or sore throat and have noticed the INR jumping up usually if I increase it.

But I am now aware of many foods that act as blood thinners. I haven't yet worked out if all have an effect on INR or not as a bit confused if warfarin is thinning the blood or messing with some other process to stop clotting.

I do remember once in the early days that I binged on a large can of salmon and my inr really jumped. I found the same when eating a large amount of almonds. I now know that they are both supposed to thin the blood.

I guess you will work out the best way forward for you. If not contraindicated maybe one of the newer drugs might better for you.

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I Hi, thanks for that

think that once I get my INR stabilized I will look at how the food affects it

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Hi, welcome - as with everything with APS, we have to have a balance of everything, to achieve as normal a life as possible.

I don't know much about DHEA, I'm presuming it may increase anti-platlets/coagulation?

The important thing here, is for you to have an APS specialist, that can advise a correct INR level for you, with or without the DHEA, the fact you want to stay on it as it works for you should be taken into consideration.

Where are you and do you have a specialist?

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I'm in Adelaide Australia and I'm just under my local GP. When was first diagnosed 10 years ago I was referred to a specialist but he more or less said I was at risk because I was overweight and said I just needed to loose weight to cut down the risk of dvt .my sister was also diagnosed soon after me and her specialist fobbed her off and my doctor was livid and reported it to the hospital where she practised.my GP pretty good and knows a lot about APS and warfarin but wont budge on letting me take my fish oil

On reading all the posts on this site I realise now I've had a myriad of symptoms for years but didn't know it was because of APS

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The dhea is high potency fish oil by BioCeuticals . my GP also said I cant take the Dominic acid and b vitamins which was being used to support my heart health

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Welcome from another Aussie, but in Sydney. If your GP is sufficiently au fait with APS he can look after you as far as monitoring INR levels, but you really need a specialist-Rheum or Haem to keep track of what's happening. I'm pretty lucky to have landed both of these near home and I keep track fairly regularly with both. Having these doctors with visiting rights to local hospital in the means I don't have to go through a great rigmarole explaining to ED doctors what's happening. (If they have even heard of APS)!

I've been fairly well now for a few years and much as I'm not keen on a bunch of tablets to take every day I also watch my diet and walk daily to shed a few KG's ;))

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I'm on Warfarin for life after multiple strokes in the last 5 years. I do take supplements but I was already taking them before my first stroke (bit of a fitness freak). I was told to continue on my current diet rather than change it to suit the Warfarin the Warfarin would be adjusted to suit my diet. It seems to work as I take a fairly low dose of Warfarin 3mgs. I take 4000mg of fish oil a day split between two doses, I take 1000 iu of vitamin E a day, 5000 iu of D3 a day. I also take 2000mg of vitamin c a day,Plus vitamin b complex and magnesium. Most of these were taken pre stroke but the vitamin E, magnesium and D3 were added post stroke. All my Docs are aware of what I take and appear to have no problem with it, well the Aps specialists are fine with it and the rest have learnt to stay quiet.

I forgot to say I maintain an Inr of 4.5 and it's very stable.

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I was taking the fish oil, folinic acid, multivitamin, magnesium and some cholesterol natural therapy and magnesium as well as menopause support and the doctors at the hospital wouldnt let me Continue them .I didn't know anything about warfarin at that stage so did what I was told. They put me on 8 mg warfarin and 2 cleaned injections per day for the first two week but my inr was over 6 when the hospital signed me back to my GP and he is cutting it back to 5 mg this weekend hopefully it will settle and be a more consistent inr. Once I'm stable for a while I might try getting back on it

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Hi, there are alternatives around for Warfarin if it does not suit you, however please remain under the care of your main Hughes Syndrome/APS specialist and take on board what they say. Fish oil would effect your INR, a lot of things do. I am not on Warfarin, so take a host of supplements, plus brazil nuts as I am gluten free and need my daily Selenium allowance. I am careful to test in detail my B12, Iron, D and also Thyroid, privately and extensively. Any supplement can upset Warfarin, however please don't come off it without expert guidance regarding an alternative anticoagulant. MaryF

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I totally agree with Tucson in previous post. You need not change your diet to suit the warfarin, rather change the warfarin to suit the diet. Doctors like control, and if the patient eats NO Vitamin K foods — such as leafy greens— and NO thinning foods, such as cranberries, wine or ginger — then they are more certain that the iNR will not go haywire.

But I’m on warfarin for life. For life. And my stomach works better, and I have more energy when I eat 4-6 servings a day of green leafy vegetables. So I do. and when I added all that Vitamin K to my diet my supportive doctors just agreed to OK extra INRs for ther first few weeks and adjust warfarin doseage accordingly. Which they did.

I urge all warfarin newbies to keep a detailed chart of foods eaten, activities and health issues and INRs. You will notice patterns which are specific to you. We’re all different! And once you note those patterns you will have internalized the data and may — MAY — have few problems in the future.

And, by the way — regarding your post topic — warfarin IS a natural medicine. Straight from the curare plant in South America. And the good news about warfarin, as my prescribing hematologist explained, “We have used warfarin for years and years. Its a natural substance. WE know what it does and what it does not do. It inhibits the uptake of Vitamin K so as to result in blood which has less propensity to clot a day or 2 later. And that ‘s ALL it does! NO association with cancer or such. We’ve used it for yaars and we know the side effects, and the side effects — bleeding — is actually what the drug is programmed to do.

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For all that we've used warfarin for decades there still seems to be far more medical opinion than actual knowledge about it. In only two years on warfarin I've been given two completely different "strict daily limit"s for alcohol consumption on warfarin, and a third (different) opinion from a consultant. I stick more or less to the higher limit, (obviously - the lower limit I was given is less than one beer or one glass of wine which is just silly), but no one has ever shown me (and I cannot find) _any_ evidence behind the numbers - they appear to be just made up.

As for side effects - doctors only tell us the side effects we need to be on the lookout for because they may require immediate medical action. Just as with symptoms, being asked or told what to look for is proven to lead to over-reporting, so they rely on us telling them and only then will they (maybe) acknowledge the side effect. And after all, why worry the patient about a side effect that may never happen - keep them in blissful ignorance.

So for warfarin, we get told the bleeding side effects, nothing else.

Did your doctor tell you about the vascular calcification? (see e.g. amjmed.com/article/S0002-93... ). Doesn't sound like it, nor did mine, even when my blood calcium levels went haywire after starting warfain, and my cholesterol shot up. All I got was something like "hmm, that's interesting" - but if and when they scan my arteries again and say they've got worse I have done my research (now) and I know the likely cause.

I wasn't told about the cold intolerance either, but when I reported it I was instantly told "oh we see that a lot with warfarin".

They didn't tell me about the churning/cramping stomach/guts that would keep me awake at night either - but when I reported it I was instantly given PPIs and then a whole stack more drugs "to help with the effects of the warfarin". They didn't suggest that I could resolve that issue, and come off the other drugs which had other nasty effects, just by moving the time of the warfarin dose - I had to find that info from other warfarin users on the internet. In return, when they phone to give me a dose adjustment for "today" I don't tell them that it will actually be tomorrow's dose because I've already had today - keep them in blissful ignorance (and if I ever do go worryingly high I always keep spinach in, which will correct it faster than their dose reduction anyway).

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Well, that does explain my high serum calcium levels and the joint calcification/arthritis. One hip replaced, one knee needs to be replaced soon, and the other hip is beginning to exhib troubling pains which I associate with arthritis. Sigh.

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Thanks Gina, I am hoping I can find a specialist who is willing to support me in getting back to what I was taking before. But it's early days and I'm still getting used to the fact ill be on Warfarin for life and hope ill learn enough about it to control things better myself with support instead of having a brick wall every time I ask about . I like your advice and I will start keeping a Diary so I can see the things that affect my levels

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I've also found that a big handful of cranberries (dried) when added to my muesli has no impact on my Inr at all. I trialled it by testing daily both before after and during and there was no change at all. So cranberry juice may affect it, I don't know because I don't like it but the berries themselves were fine. Why that should be, I dunno but for me it's true and you only find these things if you are able to test every day while performing a trial and able to adjust your dose accordingly.

We can only prove these things by trial and error and self testing.

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Aloha from Hawaii. ..

I agree to take the supplements and veggies you need to maintain your health. Test INR when needed to learn what impact those foids have and adjust the warfarin dosage accordinglt.

I've followed that regimen for about 30 years (since my last clot) with good results.

Good luck!

Kerstin

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My personal view only but as long as you take the same amount of the supplement/s everyday they will be able to adjust your warfarin to your INR appropriately. Good luck

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I have been on Coumadin since 1992 when I was diagnosed with lupus anticoagulant. I also take fish oil dairy. It has no effect on my INR

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I take 3600 ml fish oil a day .and have for 14 years or better . BUT also everyone is different ,take different meds ,and their bodies deal with them differently. This is my opinion and how it works for me . My INR is very very unstable and always has been . i can go from 2.4 on Tues. and be 9.1 on Fri. - they test my blood every three days just to make sure I am not going to low or to high. They don't necessarily change dosing unless it is warranted. And i have many circumstances that make this a must . I don't know how many doctors you deal with , but I have then talk before any one Doc. changes or try's to change a med that another Doc. has prescribed .

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