Supplements : Hi there I have just been... - Hughes Syndrome -...

Hughes Syndrome - APS Support

9,546 members9,668 posts

Supplements

Aihpos
Aihpos

Hi there I have just been diagnosed with APS and now waiting to be put on to warfarin I was Initially on clopidogrel since November after having several tias.

I just had an appointment with the heamotoligist who says warfarin is the best.

I’m very worried as I travel quite a bit and hope I can keep up with my INR.

Does anyone know of any supplements that can help.

Thankyou all stay well🙏

19 Replies
oldestnewest
HollyHeski
HollyHeskiAdministrator

Hi, supplements are a difficult subject for us, as can react with APS as well as the warfarin.

Key with warfarin is to eat what you want in moderation but if including vitamin k produce, then to eat the same amount each day.

Talk to your specialist regarding supplements.

Once stable INR is maintained travel should not be a problem other than time differences.

Aihpos
Aihpos in reply to HollyHeski

thanx for your reply..

I’m constantly looking at supplements 😢I thought maybe omega 3 was ok

Aihpos
Aihpos in reply to HollyHeski

Thankyou🙏

Once on warfarin supplements are usually out of bounds unless on doctor's advice.

I would recommend self-testing (coaguchek) for travelling, BUT, again, only with doctor's agreement and it will (or should) be after a period (months) of doing every test along with a venous comparison to check that fingerprick testing is accurate for you. Took me over six months to get self testing approved and verified as accurate (for me).

Note that the accuracy verification should also happen if your clinic uses fingerprick testing - it's the testing method, not the physical machine, that is (sometimes) the issue. If it doesn't work for you then you are stuck on blood draws for every test.

It can take a while to get settled and stable on warfarin, and to get used to it. Some people get stable quickly, some slowly, some never. Some people are instantly happy on it, some aren't. I am stable, but I dislike it (putting it mildly) and it took 3-4years to get used to it.

I had stroke (TIA) too, and was on clopidogrel for months before moving to warfarin - it is the only real approved/licensed option for APS following stroke, typically the only way you get to even try other things is if you have a bed reaction to warfarin and can't take it.

Aihpos
Aihpos in reply to Ray46

Hi

I wish I could stay on clopidogrel but the heamotoligist wants me on warfarin.

Omega 3 I though was a good option

Lure2
Lure2 in reply to Aihpos

Read Kay Thackrays book "Sticky Blood Explained". She has got TIAs etc herself and has APS. A very good book to understand this illness and also for relatives to understand why we behave a bit odd and get those many curious symptoms.

I selftest and that you could also do. We need a Specialist as so few Doctors understand what is wrong with us - our sticky blood that has to be thinned at a stable and rather high level. We need an anticoagulation drug and Warfarin is the best.

Aihpos
Aihpos in reply to Lure2

Thankyou will look for the book🙏

Aihpos
Aihpos in reply to Ray46

I hope for the best🙏

You should he able to get your INR checked at a hospital or clinic when travelling.Might cost small amount but if abroad private ones are best.It is what I do when on holiday.I only finger prick at own gp in England as that's what is offered and I get instant result and change of dose.

Thankyou that’s what I will do go to a private clinic as I stay sometimes two months at a go so I’m back n fourth all the time so I was so worried how I would manage.

Thankyou so much

Wittycjt
Wittycjt in reply to Aihpos

Another book which could help is called eat on warfarin by Cath Atkins -i think. Good luck i hope it is an easy switch for you

I take warfarin and omega 3s. Also( all dr suggested) magnesium and diltiazem for a fib. My diagnosing hematologist suggested that I keep a detailed log of meds, supplements, foods and activities with INR and that I would come to understand how my body reacts to warfarin. I did this, and in the 20 years on warfarin I have been under or over target INR less than 10 times.

I did give up whitewater rafting and mountain biking, but I still bike on rail trails and walk 5+ miles daily. So, despite its negative reputation, I have found it easy to adjust and my life style has barely changed.

Since warfarin interferes in the end stage of coagulation, I have learned that if I get a cut and it looks like my body has clitted it off and -" looks like I dont need a band aid," that No. I better put on that band aid.

Aihpos
Aihpos in reply to GinaD

Thankyou for the advice really appreciate all the advice I can get.

Omega 3 is thought to have a slight anticoagulant effect so it is recommended that you don’t take it with any anticoagulation medication as this will increase the likelihood of you having a bleed. It is a small risk from what I have heard but it is an additional risk.

If you really feel the need for it then ask your consultant if it’s ok.

But you need to stabilise your INR first so that you know what your diet should be. Warfarin acts differently to clopidogrel but it has a better anticoagulant effect than

Clopidogrel.

I agree that self testing would be good idea if you stay in different countries. But only if you are one of the APS warfarin users who are accurate on finger-prick machines. Some APS patients cannot use them, I think it’s something to do with those who are Lupus anticoagulant positive but whichever test or tests you are positive on then you need to check your finger-prick testing to the result from a venous test several times and make sure the readings are the same (or very similar) before relying on the self testing machine. And you need your consultants approval to use home testing.

Aihpos
Aihpos in reply to Jumper99

Ok I will take it up with my heamotoligist 🙏

Hi , I was diagnosed with SLE and APS about 25 years ago , been on Warfarin ever since. Initially my INR was all over the place , was hospitalised three times for Melena and Haematuria. Finally purchased an INR tester from CoaguChek , bit expensive but best thing I ever did ; test myself twice per week and adjust my dose accordingly , by breaking the tablets I adjust my dose down to .25 of a mg. I get a check fom my local health centre every 3 months. This regime has kept me in my theraputic range and bleed free for over twenty years.

Lure2
Lure2 in reply to jamesroybuck

Glad to hear that. What therapeutic range are you on? We very seldom bleed from APS but clot a lot. Are you positive to Lupus Anticoagulant as INR all over the place? How big different is it between the fingertiptest and the veintest? They should do parallelltesting every 2 or 3 month for their and your own sake. You should have something when the INR is too low to take like a Heparinshot.

jamesroybuck
jamesroybuck in reply to Lure2

Hi ; thanks for replying ; my therapeutic range is 2.0 to 3.0 and looking through my records the highest variance between my testing and the clinic testing is only 0.2 With regard to Lupus Anticoagulant , I don't know ,I go to the clinic every six months and they take loads of blood tests and in twenty years they have never contacted me or discussed the results with me. On my next visit I will ask the question. Regards Jim

I saw that you also have SLE. Hope you have got a Specialist who knows autoimmun illnesses quite well.

I am primary APS incl Lupus Anticoagulant and need an INR between 3.5 - 4.0 to be without symptoms. Do you feel ok when on an INR of 2.0? What symptoms did you have when diagnosed? Are they gone now?

You may also like...