Sticky Blood-Hughes Syndrome Support
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Changing anticoagulant

We are due to go and discuss my husbands anticoagulant. The rheumatologist has suggested changing from warfarin due to constant irregularities in INR. I do not have much faith in this rheumatologist as she suggested I put my husband on glucosamine. and omega 3 to help with his joints saying there was no effect on the INR. ( I off course corrected her on this and upon a 2nd check on the computer search she finally agreed there was. )They are now saying that readings for APS are also not consistent. The last one was taken when off warfarin but following being thombalised after a 3 rd stroke. They say there is not enough evidence to know whether thombalising would make readings accurate. My concern is that if we change to a different anticoagulant how will we monitor the clotting readings that obviously are creating strokes. Does anyone know of another cause other than APS for blood becoming thick and creating clots?

We are very concerned and want to find out what we can before going to speak with a doctor, you seem to have more knowledge than them in some cases.

8 Replies

I think i would be looking to change consultants,they have a good list on here of specialist, none of the other anticoagulants have been approved for our condition,and are not reversible yet,let us know how you get on x


Unfortunately it was a registrar of one of the recommended consultants on this sight that we saw and not the actual one herself. Thank you for the info.



First i would like to say that your husband can be proud to have you with your valuable help!

Then I think you should report this "Specialist" on this forum for not knowing what she is talking of.

I also totally agree with Tim as I have the same circumstances here in Sweden and selftest every second day-

Good Luck with a new fresh Specialist!

Kerstin in Stockholm


I wonder what degree of variation your husband has whilst on warfarin. One of the ways of getting a better grip on variable INR results may, and I emphasis may, be self-monitoring with a coagucheck machine.

Another is to to keep the consumption of those things which affret warfarin at a constant level (supplements included)

On the advice of Prof Hughes himself I self-monitor and self-medicate. I check my INR every two days and have heparin to inject if I fall below 3.0 (target is 3.8 to 4.0) I can range from 2.6 (usually because I've forgotten a daily dose, to 5.6 (for reasons I cannot explain). I am though usually pretty near the target but when something does go wrong I am on top of it in next to no time.

You might want to discuss this as an option but should remember that some people don't get on with the coaguchek machine, that you have to buy it yourself (about £350) and that you relly need to get the strips on script otherwise its a vfery expensive business (about £140 for 48 test strips I think)

There are other alternatives, some here use heparin, others I think have moved on to rivaroxaban. Monitoring their effect is a different matter from monitoring warfarin as they act to control coagulation in different ways.

I picked up a leaflet from my pharmacy the other day which you may find helpful. It is put out by the makers of Xarelto (which is rivaroxaban) and titled 'A patients guide to pulmonary embolism treatment' - but don't forget is is the pharma's promo material !


Thank you we have previously asked about self testing but doctors turned down prescribing sticks for the machine which we were happy to buy. I will however bring it up again at our meeting next week.


There are patient help groups that can help challenge such decisions- a touch of brain fog prevents me from coming up with their name but others will perhaps remember and say. It isn't only a question of machines having the ability to give some people a better quality of life , which we are entitled to, there is also a good economic argument. Without question my GP would have had to spend more time with me on appointments, as well as me needing more appointments and perhaps trips to and stays in hospital. With the self-test I have been able to reassure my GP that , for example, when a new drug is tried for whatever (we seem to have issues crop up all the time) , I am on top of any effect it may have on my INR, I have on several occasions managed coagulation bridging at home on my own whereas on a previous occasion I spent a week in hospital. Knowing what my INR is, instantly, has been of considerable diagnostic benefit to my GP at times when various investigations were taking place.

I'm sure there are other examples of economic benefit on toip of the benefit to the patient.

Oh, I think the organisation is PALS. may also have useful info though it is not aimed especially at Hughes.

Best of luck

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Hi there, things sound a bit tough, it is crucial that your husband is under a consultant who fully understands Hughes Syndrome/APS:

The registrar will not have the same amount of expertise unless the consultant has got them up to speed regarding the condition and the anticoagulation. You must ring up and insist on seeing the consultant as soon as possible, this will help not only your husband but also your GP to make things better all round. MaryF


The guys before have left excellent comments. I would add that there are many known and unknown reasons for clots, apart from APS. A specialist should be able to decide which, if any, is playing a role in your husband's health. I hope you find your answers soon!


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