What is happening am I developing treatment resistance ?

Morning all

Just want some advice really

I'm 31 was diagnosed with hughes 7 years ago after a long struggle with multiple rare health problems many DVTS PE's ultimately I ended up with a gangrenous leg at 24 which required amputating it was only a plastic surgeon who said i was far too you g to have all these problems who suggested a full thrombophilia screen which was came back positive for ACL and LA with very high titres . Since then my health has been ok ish warfarin control has helped . This year I have had three major brain surgeries for movement disorder and extreme pain the last one was on the 2/11/2012 so I am only 6 weeks post op.

Recently I have been diagnosed with optical neuritis with peripheral vision loss and colour vision loss and I have been experiencing TIA'S on a weekly basis . We all know these problems are related to hughes but to make sure I contacted my neurosurgeon who scanned me to make sure it was nothing post op causing the problems which is the case these problems are not related to brain surgery .

So I contacted my anti coag nurse and asked for appointment to see my haematologist but he says I have not got one as my INR is well controlled at 2.5 plus the haematologist I was allocated too has now retired . As the days go by I am feeling more and more problems coming on with no one to turn to .

Is this my hughes getting worse or resistant to warfarin ???

Where do I go from here ??

Dan

6 Replies

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  • My INR was raised form 2.5 to 3.5 because I was still experiencing brain/fog and TIA's on the low INR. See your GP to get a referal to a haematologist.

    sharon x

  • My reaction is that you need to be under an APS specialist wether that be as Sharon says a Haematologist or Rheumatologist. Go and see your GP and ask for that referral urgently. If you tell us where you are situated we may be able to help with suggesting somebody you can take along that name to your GP.

  • I'm located in Essex near Basildon

    Thankyou for your help

  • Many Hughes patients need to keep their INR as high as 3.5-4 (or occasionally even higher) or take LMW heparin to control symptoms and some need to take an anti-platelet agent in addition. I take LMW heparin twice daily and plavix (anti platelet agent). See the recent poll on this website re INR needed to control symptoms.

  • Get to a doctor as soon as possible!!!!!!!!!! I

  • Hi hon I'm sorry things so seem to be getting worse, seem to be having similar issues myself at the moment. Pushing with my gp to try get things sorted. Sounds like a rheumy or haem are the way to go hon, as has been suggested above. May be that a higher range on Inr would help. Push for referral asap hon, shouldn't be struggling like this! Hope you feeling ok today.

    Take care gentle hugs love Sheena xxxxx :-) :-) :-)

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