Come off Warfarin

[amy1808]

Hi , I have Occipital neuralgia which is agony . The problem I have is that the can give me the correct medication to treat it because if the warfarin , my gp suggested changing to a NOAC anticoagulant . I was just wondering who of you who aren’t on warfarin what do you take and is it as affective . I need to do something as I’m in agony 24/7

[Sevenstar]

I take Clopidogrel and have been good on that (so far) !

[amy1808 in reply to Sevenstar]

I’m already on that as well as

[Lure2]

What does your Specialist of APS and Lupus say? I assume your INR is high enough.

[amy1808 in reply to Lure2]

Can’t get hold of pro haye

[Lure2 in reply to amy1808]

?

[Ozchick]

Is it worth trying LMWH for a couple of weeks to see if things improve? I'm assuming this won't interfere with the meds they'd like to try.

[HollyHeski Administrator]

Hi, I'm triple positive and unable to take warfarin, I take daily clexane, clopidogrel, and aspirin. I've been on this now for many years, really works for me.

I was part of the trial for rivaroxaban, along with clopidogrel and aspirin until they stopped the trial for triple positive patients.

I did post an article here a few weeks ago about DOACs, which may help you.

[Jumper99]

As you are on clopidogrel as well as warfarin it appears that you do need lots of anticoagulation. Clopidogrel by itself would not be strong enough anticoagulation for you.

Warfarin has been shown in research to be better than DOACs at preventing future clots in APS patients and there is a directive that warfarin is the one which should be given to APS patients. But that doesn’t mean that DOACs don’t give any anticoagulation at all. And there is also heparin (Eg clexane or fragmin) which is given by injection but has possible long term side effects too. The best, probably the only, person who can advise you is your APS consultant who will know how much anticoagulation you need and can balance that need against your need for medication which you can’t take with warfarin.

[MaryF Administrator]

Hi have you thought of asking for B12 injections to help with this pain, it might help you, or perhaps you are already having that? ncbi.nlm.nih.gov/pmc/articl... MaryF

[LindaMorrell]

Hi Amy

Just a long shot. I know a friend who has had mega arthritic pain for years. He was on Methotrixate and another strong drug for years. He started to get horrendous side affects with his skin. He was always in pain. The last 3 years he managed to cease all the meds and now takes 2 teaspoons of Turmeric with black pepper each morning. No pain. Amazing

Might be worth researching

[hihannula in reply to LindaMorrell]

I was going to suggest that as well. There are capsules on the market with that combination.