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Hughes Syndrome APS Forum

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has anyone else had pins and needles , painfull arms and hands and tremors after being taken off warfarin , having been on it for 7 years

dutchess profile image
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Sal0712 profile image
Sal0712

My answer to that is yes I have. I had to come off warfarin for a short time when diagnosed with vertigo for tests. I am back on warfarin now, but know when my INR is low, as these are the symptoms I get along with more headaches and earache. Hope your feeling better soon x

sharonap profile image
sharonap

When my INR is low (below 2.5) I get similar symtoms to you I now have heparin injections when my INR goes below 3 to help combat this. My INR range is 3.0-4.0 x

Coppernob profile image
Coppernob

All I know is that pins and needles etc are/can be neurological symptoms of APS/Sjogrens so I guess if your anticoagulation falls below optimum levels, that would explain a return of these symptoms. I find daily injections of B12 (methylcobalamin) help enormously with these and other neurological symptoms. Perhaps you could have your B12 levels tested - though reference levels are poor here, plus you're never given as much as you really need.

Manofmendip profile image
Manofmendip

Hi Dutchess

These are all symptoms of APS, especially when it is not being treated with antigoagulation. Why have you been taken off Warfarin and have you been put on another anticoagulant?

Best wishes.

Dave

dutchess profile image
dutchess in reply to Manofmendip

because my GP thinks its riskier to have a bleed than a clot , now on 300mgs of aspirin . had previous still birth and multiple P.E 7 years ago . was then that i was diagnosed with APS .

dorsetbutterfly profile image
dorsetbutterfly

I have all those symptoms and I am on 3oomg aspirin. Flared up in last 8 months although been on this dose of aspirin for5 years and never taken Warfarin. My blood tests showed everything normal (under control) and I now await appointment with neurologist in Dorchester in May

Hi Duttchess,

I had all those symptoms before warfarin and after warfarin still mainly painful hands.

Take care!

dutchess profile image
dutchess in reply to

Thankyou to all who replied to my question , hugs to all x

dutchess profile image
dutchess

my Gp thinks its more risky on warfarin as risk of bleeding is worse in her words than clotting , she also thinks these symptoms are stress , its such a shame GP dont know about APS , im now on 300 mg of aspirin , but was so well for 7 years on warfarin .

dutchess profile image
dutchess

Thank you for your reply , I think the trouble is the GP see it as black or white , clot or bleed , they dont understand the horrible symptoms with APS . I have seen 4 drs yet none will believe i need the warfarin , x

MaryF profile image
MaryFAdministrator

Hi there, hoping you get some more detailed resolution soon, please do print out some of the papers off our HSF site for the GP, this often helps. Mary F x

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