Sticky Blood-Hughes Syndrome Support
8,078 members8,319 posts


Hi I am writing his on behalf of my wife who has lost the ability to communicate after suffering a stroke during the may bank holiday a year ago. Jo had a chest infection so our gp prescribed a strong antibiotic we insisted her inr should be checked as she has a long history of Clot's and has been diagnosed with APS. On Friday night the inr was 1.1 (clot time for Jo) but the BRI in Bristol only has procedure's in its labs for acting if a high inr is found outside normal times if it is low they leave it until the next working day. My wife suffered a massive stroke on the sunday. The Bristol Royal imfirmary tell me my wife is the first person to suffer due to this policy but I have difficulty beliving this. Has anyone else had similar problem's as I am told the practice is common in the NHS. Cheers Brian

13 Replies

Please forgive my typing as I find phones a bit tricky to type on


Hi, I am really sorry to hear about this, and no she is not the first, however I can't speak with experience of this area of the country, only know that other people have had this happen to them in other places in the UK. Are you being well supported now? There is also a local group not too far from you which Dave - Manofmendip an Administrator will fill you in about. Please feel free to use this forum for support and information, we have quite a few on here on behalf of partners. All the best to you. MaryF


Hi Brian,

So sorry to hear that your wife had a stroke because of a too low INR.

How does she manage?

Best wishes from Kerstin in Stockholm and I hope for her recovery as soon as possible


In America, they do the same. Which of course is very dangerous for APS patients! Hugs to you and your wife.


Thank you, The doctors pretty much wrote her off after the stroke and suggested she may not be able to return home but I was determined she would not recover without her family around her and I believe that was the case, we work in a local gym a few times a week and joanne is now walking short distances and is starting to practice walking without a stick, she has lost the use of her right arm but we are starting to get a bit of response there and her sight has been badly affected. The real nightmare is her communication but we are working on it but it is a very gradual process. The important thing though is we can still laugh and although I have lost my job and had life torn to pieces Jo and I are now closer than I would have ever thought possible and it amazes me that with all she has been through she still worry's more about me and the kid's than herself.


Hi, do you have the support of a good Hughes Syndrome/APS specialist? I also mentioned above, that there is a local group, which could be of benefit to you both. Hopefully you can look into that. MaryF


I am so so so sorry with what has happened! It's so wrong. Then they wonder why some APS sufferers self medicate! Not that's that's something I condone) but were scared! My names Jo and I've recently had a stroke my left hand side has been effected my speech is still slurry and I'm twice as slow as before! and as for my memory not good! Tho my neurologist is very good I've not been offered any help, he believes I will return to normal by myself!?! I have a fantastic husband too so we are lucky ladies! Sent my regard to your Jo and tell her to keep up the good work. God bless guys. Jo :0)


I'm so sorry to hear about your wife. My husbands INR fluctuates all the time and the NHS/GP won't check it often enough, so we bought a coaguchek machine and do it ourselves regularly.

I have heard of your type of problem many times, especially when people are hospitalised, so now if he is in hospital or on different medication we can do our own checks when we think they are needed. (A lot more often than the NHS will do them!)

You may need to 'force' your GP to prescribe the lancets and test strips, but it is well worth it.

The machine is easy to use and cost us £299.


Her heamatologist did try a coaguchek but found it was not accurate on her after a few tests while she was in hospital. But we have never seen an APS speacialist., she has only just been diagnosed dispite a 20 year history of miscarriage and multiple clots for years we have been told it's a blood condition but as the medication is the same whatever we find just carry on with the Warferin, also our 18 year old daughter has just tested positive for APS is it common to run in families. And jomac I suspect your husband would say he is the lucky one as I know I would with my wife.


Hi, It is very important to have an APS-doctor. So few doctors know about this illness which has to do with all parts of the body.

Hope you can be able to visit Daves Group. Perhaps it is not too far away from where you live.

I live in Stockholm and I have APS and I selftest since 2 years. When you have APS you need a higher INR than other stroke-patients because we have so thick blood.

Both MaryF and Dave know this illness very well. I agree with them.

Give my love to Jo. Best wishes from Kerstin


It seems to have a close pattern in some families, my two sisters, and also a question mark over my brothers endless TIA's. plus my late father, and now my two youngest children. So in our case yes it has run in the family. MaryF


Dear Brian

I have sent you a private message about our APS South West Group.

Best regards.



I am so sorry to hear of your experience and your wife's stroke. I am in the US and have had bad experiences with a doctor when my INR was very low. Fortunately, I have found a good doctor who monitors my INR very carefully. I had a stroke in March and have struggled to find good care. Now for two weeks my INR has been 1.7 then 1.8. and after my blood test my doctor called me within hours of the blood test to increase my Warfarin. I understand that if it gets extremely low, they give shots of an anticoagulant. My rheumatologist has also prescribed Plaquenil and I have been told that careful monitoring with Warfarin and Plaquenil combined will help keep me from having another stroke (hopefully).

It's crucial that you find a doctor that will follow your wife carefully, or if you're lucky, go to a Coumadin Clinic near you where they test the blood rapidly and give you directions immediately. Those clinics are rare in the New York City where I live.

I wish you and your wife the very best of care.


You may also like...