Sticky Blood-Hughes Syndrome Support
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Hi, I was diagnosed in 2006, after having a stroke. I've always had symptoms such as fatigue, double vision, vertigo, nausea and joint pain

(among others), but been able to live with it reasonably well. The last few weeks though have been really tough. I had an incident where my left thumb completely numb, which I haven't had since a few months after the stroke. All my other APS symptoms have gone mad, so I had my INR checked. It was 3.3, low, but not that low. Has anyone else had their symptoms go like this, and could it be it is the start of full blown Lupus?

5 Replies

Hi there, Sorry to hear about your symptoms and also the worries that go with this, lots of people on here, have similar things with fluctuating INR, these are questions that other members on the same meds as you should be able to clarify more. and help you with. I hope you are due a check up, and I do also think that flares can happen, and sometimes different factors. Do you have a consultant beyond GP, I am sure they will want to help with your worries beyond just checking your INR levels. Do keep us posted. Best wishes Mary F


I get all your symptoms and more and feel awful quite a lot of the time. I attended the Lupus clinic for 4 years but since then one doctor said I dont have Lupus, but I can tick most of the boxes for it.

With strokes there is no telling what problems you are going to encounter. I often get numb left leg and both feet. My eyes are constantly a problem.


I asked over twenty years ago, if I had Lupus... I have lots of the clinical symptoms... have only in the last few weeks aged 46, passed a test, same for everything else. There is too much reliance on tests these days by the medical profession and not enough clinical examination. MF


I recently tested positive for lupus after years of negative. Doc said I have it, I often wonder though if it is just the hughes.

Last week or so been very tired, nauseated and no energy. I walk downstairs and need to sit a minute most of the time.

Hip bursitis has gotten worse and I finally looked it up on web. No bike riding for me for a while and going to baby it, try and lose some of this weight I put on last few mos, as I am sure thats aggravating it.

So for now I just rest and hope my energy comes back, hip stops hurting and nausea and dizzyness move along soon.


Thanks for your replies, it's always good to hear other people's thoughts. I must admit I'm not sure what the difference is between Lupus and APS, I guess just the severity. I'll see how it goes for a week or 2


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