I am unable to work with my symptoms of Hughes and 2 strokes and I am being assessed for PIP next week, very quick I only applied on advice from my GP last week. I just would like to know if anyone else is unable to work because of Hughes, as reading through the forum there seems to be a lot of people still very active and working. I currently use a wheelchair for any long days out and there seems to be people doing runs and walking long distances. As my INR levels are fluctuating between 1 and 2, despite 8mg of Warafarin, Clopidogrel 75mg and tinzaparin injection 6.5mls, As a consequence I'm suffering with extreme fatigue, dizziness and foggy brain.

I do hope when my levels are right and rehab for my stroke I too will be able to do these things.

Any advice


15 Replies

  • I would encourage anyone who might be thinking of making a claim for any disability benefits to look at the Benefits and Work website. A charity with great expertise. Also think about CAB advice. Ben and Work have a PIP test via this link

    Best of luck

  • Many thanks

  • I agree with this, and also take your most trusted advocate with you, friend, colleague, relative or neighbour etc. MaryF

  • Many thanks, I'm having my assessment at home and my husband will be at home with me


  • Hi,

    I am sorry you are feeling so bad.

    I wonder if you have got an APS-Specialist. Why has he/she put you on such a low INR-level ? At that level your are practically not anticoagulated.

    I am primary APS (no other autoimmun disorders) and I am selftesting on an INR between 3.2 - 3.8. We have very thick blood and we do not usually bleed but clot from this disorder.

    Most of us need an INR a bit over 3.5 to feel good and to be properly anticoagulated.

    The amount of warfarin in tablets or mg is not so important. Important is the INR!

    Best wishes from Kerstin in Stockholm

  • Thank you for you helpful response, my specialist has suggested an INR of 3.5 to 4 but unfortunately I am not responding to the treatment at present I am seeing him again on Wednesday so hopefully I can discuss this with him, as I am also suffering severe lower back pain.

  • Hi Danni,

    Agree fully with Kerstin. If my INR's fall below 3.5 I really start to have problems. I think that what the haematologists may be doing is treating you as a heart patient and thinking your INRs should be 1-2 - I had this problem and had to write on the back of my INR form every week that it was for LUPUS and APS. Finally they called me in and we discussed it in full and they finally agreed that my INRs should be around 3.5. I have had a sudden fall of the INRs to 1.6 yesterday and I feel just awful. I am also on 7 - 8 mg of warfarin and have just had to up it hopefully for a few days. How long have you been on the warfarin for??

    Go back to the rheumatologist he may be able to help.

    Regards Diane

  • I am seeing my rheumatologist on Wednesday, my INR is suppose to be 3.5 to 4 I just haven't got any higher than 2.1 despite all the medication. Thanks for your support.

  • Hi, will your GP not increase your warfarin dose further than 8mg? For example, my dose is 15mg to keep me up at 3.5

  • Hi i have the same problem my INR should be 4.5 to 5 as i have had so many PEs and clots , i take anting from 40/50mg daily and my INR still goes up and down all the time its very hard to keep it in range i have bloods taken twice a week for life now.

    Good luck hope you get sorted soon x

  • I must have been tired..... The answer was meant for you and I also mixed up Daves answer to Karen about Aspirin. I know you are not taking Aspirin. Sorry.


  • Hi,

    I thought you were on Rivaroxaban. You were 3 months ago.

    You say you have got an INR of 0.9. Perhaps you mean the value we all have before we start Warfarin, Most of us have an INR of 1.0. anticoagulated.

    As Dave said you do not cheque your INR when you are on Aspirin, only on Warfarin.

    You say your therapeutic level of INR is 4.5 - 5.0. That is a very high level to be on.

    What do you mean with "I take anting from 40/50 mg daily and my INR still goes up and down all the time"?

    Best wishes from Kerstin in Stockholm

  • I have APS and had 2 strokes I whent for PIP got started on each one get CAB to help you fill it in I don't use a wheel chair but can not work no more it dose my head in I had good days and lots of bad days in pain good luck let us know how you get on x

  • Thank you, I have my assessment at home on Tuesday - so hopefully I meet their criteria.

  • Yes Danni, I am unable to work.I have APS,RA &Fibromyalgia. I claim ESA(employment support allowance)and lower disability allowance. think the ESA is changing to PIPS thou never had face to face assessment. Hope yours went in your favour as you sound like you definitely need it

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