Any advice please

My husband has aps he had 2 strokes before we found out , hes been back at work for over a year , but very recently has been very tired and not himself , I am out of my mind with worry , i am hoping he has not had another , and hope it's just overwork , I would like him to see a specialist , or at least have a Mri scan , am hitting a brick wall at the minute with local gps , can anyone give me any advice please on paths to take , avenues to explore many thanks in advance , ps can anyone tell me what a aps relapse is ? and could he be going through this

12 Replies

  • Sorry to hear this and lets see if we can help you. First of all is your husband on any treatment for his APS. Is he taking warfarin for instance and is he being monitored by anyone other than the GP? We always recommend that anyone with APS are seen by specialist and we have a list of recommended people on the top of this page under Pinned Posts. Look under your area. Apart from being very tired what other symptoms has your husband got? It could be that he has an iron deficiency or his thyroid is also too low. We recommend that these and Vit D and B12 are also tested.

    Please let me know the answers to the above so we can support more. x

  • Thank you so much for replying so quickly , he is on warfarin , he sees a gp and a warfarin nurse , he has never seen a aps specalist ever , he was diaignosed by a neurologist and rheumatoid specialist who he is now signed off from , can I insist on seeing a specialist ? He is also experiecing dizzy spells in fact his exact words are "my heads feels like not my own " he had a stutter after his stroke , what is clear and only surfaces when he is put under pressure or he is not feeling well , this too is more prevalent at minute too , I have managed to get a appointment at doctors tomorrow ( local gp ) so anything that you could tell me to do or say would be a big help thank you again ps I live in the West Yorkshire area of the uk

  • Hi, he probably needs to look at his blood results with GP, so some testing done, please stress to the GP how ill he feels, They should not only look at the activity of his Hughes Syndrome, but should also be doing an ESR and CRP, also a Thyroid panel, plus his Vitamin D, B12 and Iron, any of this can cause a problem, please let us know how you get on. Is your husband in the UK and under one of our recommended specialists? MaryF

  • He as never seen a APS specialist Yet! He was told he had it, given a leaflet and sent on his way. All I know about Aps I find out from here. X

  • I am presuming you are in the UK, if so here is the list, and be firm with your GP about a referral and blood tests:

    and if not in the UK, will still try and help. MaryF

  • Yes we are in the uk sorry I forgot to say. We are seeing the GP tomorrow so I will ask about a referral. Thank you

  • Hi, He has as it seems neurological symptoms from his APS. As we have too thick blood the anticoagulation is very important and also at a rather high INR-level untill he is without symptoms.

    Do you know how often he tests his INR in the vein at a lab and also what therapeutic level the GP has put him on. Most of us feel best at an INR around 3.5.

    Good Luck tomorrow and your husband is lucky who has got you by his side!

    Best wishes from Kerstin in Stockholm

  • Hi, he is due to be tested on the 25th of May. It will be 12 weeks between tests this time. Is INR was 3.3 on the last test. Thank you

  • Hi,

    3.3 in INR is quite ok but you mean he did test his antibodies 12 weeks ago. They test 3 different antibodies for APS and always 12 weeks between the tests. Are the three or only one of them positive twice he has most certainly APS. But as he is already on Warfarin I guess he has done the tests for APS earlier or did he get the Warfarin after his strokes when you did not know he had APS?

    He must certainly take the INR (how thick the blood is at that moment) more often than every 12 weeks. The INR is important because it tells you if he is properly anticoagulated.

    He will be ok you see!


  • Linca - Please tell your GP that having an INR checked every 3 months is NOT acceptable with our condition! I suspect that his warfarin nurse is treating him like a AF patient when it is ok to have longer gaps between testing. He needs to ask for self testing which is now recommended by NICE. The only issue is if the GP will prescribe enough of the testing strips to put in the machine!!

    You should ask to be referred to an APS specialist and the nearest one on the list to you would be Dr Michael Martin at St James Hospital in Leeds.

  • I am so glad that APsnotFab answered you and even could give you a name to a Specialist of this illness.

    There are very very few Doctors who know this rare and tricky illness. With a proper anticoagulation he will be ok!

    You must be very firm with this! Some "ordinary" Doctors do not understand how important it is for us with a Specialist and a proper anticoagulation.

    I selftest here in Sweden with good result.

    Wish you well both of you and Good Luck


  • You must get the book Sticky Blood by Kay Thackray! She has the disease and one of Dr. Hughes's patients! It's very informative! Kerstin told me to read it and I made my sister get tested too! She has it too as it can be familiar!

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