I have numbness in my index finger and big toes. Is this common with APS? I have varying symptoms for APS,Lupus and test positive for RA

Although I have no joint pain symptoms. I have had a DVT and am on Warfarin. I also take Plaquenil to prevent RA symptoms I have migraines with strong family history. I live in the US and am new to this forum. It has been really helpful

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  • Hi there and welcome, you are describing some pretty typical symptoms, and it sounds as if your care is on the right track, do share with other members where you get treated as many from the USA are on this forum and it will help those in your area or not too far away. MaryF

  • I get treated by Dr. William McClatchey in Atlanta GA. He is a rheumatologist and seems very knowledgeable about APS. I think he said he has been to something that. Dr. Hughes was involved with.

  • Perfect, that makes sense completely, we all so appreciate his detailed input into medical situations. MaryF

  • Hi, I'm up in West Virginia. I find that when I am in certain positions when sleeping that circulation is cut off. In my case it's the back of my head and so I am obsessive about using pillows of a certain firmness. So, if something similar is causing your problems, you might experiment with sleeping with slippers or mittens.

    Gina

  • Thanks I may have to try a wrist splint

  • is this numbness just when you are cold? Many people with Hughes have Reynaud's disease, including myself. However if the numbness is permanent it may be that you are not getting enough anticoagulation. I have permanent numbness in my left leg and toes. It started when I was only receiving aspirin. As soon as I went on Sinthrome it stopped getting any worse but the damage is permanent, so please get it checked out if you are worried.

  • It has been permanent. Thanks I will have it checked. Neurologist checked it and said carpal tunnel but at that time I didn't get the correlation and I don't test positive for Aps but starting to have more symptoms that point in that direction. I am on Warfarin but may have to check dosage.

  • Also be aware that people with Hughes Syndrome/APS often have Thyroid problems, very common to have carpel tunnel syndrome with a sluggish thyroid, also in cold weather people often find they have to slightly up their thyroid medication, it is possible to have a normal test result, unfortunately, and still have a thryoid problem! Worth checking out. MaryF

  • as I understand it, the problem is that messages are not getting through from the brain and this is causing the problem, not actual nerve damage. My INR range is between 3.5 to 4. You will probably be aware from this site that most people with Hughes have a much higher range than normal.

  • That makes sense. I am so glad I found this site. I am definitely checking to see if a higher INR makes a difference. Thank you

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