28 years with sticky- blood Syndrome

Hi all , wish I'd found this site a long time ago , feel such alone with my syndrome , and being on warfarin for the last 28 years , I should know it all ...lol but I don't.

I can honestly say I hurt in every part of my body every day and I'm sure I should still be under the blood clinic but I'm not I go for my bloodtests every 6 weeks then get my results through the door , but that's it

Can't really grumble though I'm still up and running but would like to hear from others , who maybe feel the same

Many thanks for reading

12 Replies

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  • Hi, and welcome, you have landed in the right place, many on here with Hughes Syndrome/APS find that with the right specialist and medication life can become easier. I always as do my co administrators also urge members on here to keep an eye on their levels of Vitamin D, B12 and iron, plus their Thyroid as if any of these are not quite right, pain and fatigue can be far worse. Where are you located, and who is managing your care? Do you have a designated Hughes Syndrome/APS specialist? MaryF

  • Gosh it all makes sense why I'm feel so rough all the time , no iv got no one managing my Hughes syndrome only my I N R but then that's directly with the clinic , but iv not seen a docter about my Hughes for about 20 years , iv got kidney disease and in so much pain with my bones too ,

    I'm from Andover , Hampshire , UK

  • Please look at the pinned posts on the right hand side at the top and get your doctor to refer you to one of the specialists, this is very important, your GP can do the tests mentioned above. Let us know how you get on, and do use this forum as much as you would like to, there are many people on here with similar problems. MaryF

  • Thankyou so very much , and I will do

  • Welcome to our site! Finally you did find the right place!

    Where do you live and I wonder if you have got a Specialist of APS at the blood clinic? What therapeutic level of INR have you been on during these 28 years? Sorry for all the questions but it is easier to help you when we know a little more about your symptoms etc.

    Best wishes from Kerstin in Stockholm

  • My INR should be between 2.5 and 3.5

    Which they genrelly are really good I'm on 8mg of warfarin a day .

    But iv felt so wrong cause I didn't understand why , I was forgetting things thought I was going mad and iv just got to a point I need to find out if I can help myself in any way . Thanks for reading and understanding

  • Welcome andipandi1964

    As my colleague Mary has said do get referred to an APS experienced consultant.

    What is your target INR? Many of our members find that they need an INR of between 3.5 to 4.0 to feel reasonably well.

    Where in the UK are you from?

    Dave

  • Hi

    Iv always was told my INR needed to be between 2.5 and 3.5 and that's what the blood clinic go by , really and honestly iv never been told much more , when I was first diagnosed I was on 17 mg of warfarin and was told I had lupus , then I went to USA for a operation to remove clots from my palmury artery and the professor, told me it was Hughes syndrome. But I was on 15mg for years it's only gone down to 7mg in the last 2 years ....so I really don't understand what's going on with it all .

  • Hello and welcome,

    I'm sorry you've not been managed well. As the others have said a lot of us, including me, run an inr of 3.5-4 and that helps with the pain and keeping symptoms at bay.

    A specialist in APS is a must.

    Good luck and keep us updated x

  • Thank you I will do

  • Welcome to this amazing forum! You'll find the best people on here! They're very helpful and help us work on our problems! We r kinda the forgotten ones wen it comes to getting the right kind of specialist! A Hemotologist or Rheumatologist wud be good for u as long as they specialize in APS! Good luck and you've come to the right place!!! GODSPEED

  • Thank you

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