Sticky Blood-Hughes Syndrome Support

INR Testing and local protocols

Having moved from the south coast up to Hull the protocols here are so different it would be interesting to hear what protocols are in place in different places in the UK.

Here in Hull its a nurse led clinic using a coagucheck and dosing etc is done there and then. When I first moved and said INR needs to be between 3 and 4.5 and if under 3 need Fragmin they looked at me in disbelief. I was very glad I could locate a consultants letter confirming this.

In the 20 years I have been on warfarin its never been exactly stable. Last week it was 6.7 and today 1.5 oh the joys of Warfarin. However, I'm still trying to get the nurses to understand sticky blood I am getting there and at least they listen.

As a by the by the last time I needed an urgent supply of Fragmin it took my new GP's three days to get script sorted out. I now keep some in hand.

I know I've got to the age where I can be a grumpy old woman (I relish it) but I can see my new GP and I having some interesting discussions in the future.

Heres to everyone having a happy and hopefully healthy 2017.

6 Replies

Hi Judes,

What does your APS-Specialist say about your INR 6,7 last week and 1,5 today?

You have been on Warfarin for 20 years. Have you discussed moving over to Fragmin-shots instead of Warfarin.

I selftest since 4 years on Warfarin but test myself every second or third day and then I can eat more greens if the INR is a bit high.

The most important thing is that we have Specialists who care for us and we can trust, knowing they know us and our illness.

Best wishes from Kerstin in Stockholm


Hi Kerstin

Thanks for the reply I am waiting to see new consultant one of the downsides of moving. I will get the nurse to chase it next week.

Fragmin shots could be the answer but have to be careful as am on long term steroids. The combination of the two can weaken the bones, I already take Vit D.

Will have to see how things go I'm naturally quite relaxed about things, my friends say I'm more relaxed than a sleeping dog!

All the best



Hi Jude

I moved from Warfarin to Fragmin shots and, as Fragmin is (Low Molecular Weight Heparin), I am advised that, unlike the older Heparins, it does not cause osteoporosis. Indeed, one paper that I read actually suggested that it protected against osteoporosis.

I would never willingly go back on Warfarin.


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I sympathise the nurses who test at the GP do not understand APS . You can get a leaflet from the Hughes syndrome site which can be given to the practise. If you are now in Hull are you under Dr. Allsop at Castle Hill? My dealings with him suggest he doesn't necessarily recognise APS unless you have an antibody count of 50+ .

My surgery in Driffield are very supportive of APS even though my visit to the specialist cast doubts on my original diagnosis.


I learnt from Dave that the Fragminshots (LMW Heparin) does not cause osteoporosis.

You must be serious about having a Doctor who really knows APS, a Rheumatologist who is specialized in autoimmun illnesses like APS, Sjögrens, SLE and also Thyroidea. Some of these illnesses go hand in hand ("cousins") so therefore it is important that he knows them very well and very few Doctors do.

I have both a Hematologist and a Rheumatologist that I have seen the last 10 years at least. I feel secure which is important when we have this tricky illness.



I too moved from warfarin to LMW heparin (Fragmin) almost 6 years ago. My latest Dexa scan was excellent in fact an improvement on some scores on the last one!

Look on the specialist list on our Pinned Post list at the top of this page and find a recommended Dr who is more likely to be supportive.

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