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Sticky Blood-Hughes Syndrome Support
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Symptoms raising their ugly head!!

I need to vent as its not something I find people IRL understand.

I was diagnosed 3 years ago with APS and a lupus like syndrome. I'm on a watch and wait for sjogrens and vasculitis and also suffer Raynauds.

I have a fabulous consultant who keeps a close eye over me and checks my bloods thoroughly every 3/6 months.

I take warfarin with an INR 3-4 and self test and hydroxy daily. Since being on these meds my migraines, neuro symptoms and fatigue greatly improved.

But.... For the last few months I'm suffering horrible migraines with auras lasting Upto a few days, my neuro symptoms are returning and my vasculitis/petechia has returned all over my feet and legs.

I see my consultant in 2 weeks and can't wait to offload. I'm just so frustrated with feeling my conditions are under wraps and trying so hard to let them control me. Then bam!!! I feel back to square one.

Thanks for letting me vent. tommorrows another day huh!

6 Replies

Sorry things are tough, I am glad you have your next appointment on the near horizon, do let us know how it goes. MaryF


Hope all goes well, just a thought are you getting Hydroxychloroquine or placqunil it makes a lot of difference, well it did to me anyway

Good luck


In fairness I get the hydroxy in different brands each time I collect them. I was wondering whether it was the quinoric version not agreeing with me perhaps. I may ask them to stick with the zentiva brand and see if things improve


Yes only have the ones made by Zentiva the others are different their is a lot of information on here about it, you may have to ask your GP to write this on your prescription if it were me I would ask for a new prescription tomorrow

1 like

I was on Warfarin and 75mg Aspirin, with an INR taget of 4.0, for 7 years and my migraines stopped for the whole of that period, then they returned with a vengeance. My neurologist prescribed Amitriptyline as a migraine prophylactic and that stopped them again. Then i started to get momentary dizzy spells and Prof Hughes moved me from Warfarin to Fragmin injections, which greatly improved this problem. Mostly I am free of migraine now but I can get clusters of them, particularly when I am stressed.



I know you had trouble to get teststrips enough before.

What is your therapeutic INR-level at present and how often can you test? I guess you do doubletests in the vein rather often these days when you have newly started selftesting.

For me as I have also Lupus Anticoagulant it is a big difference between the two but the difference is always the SAME with a discrepence of 0,1 - 0,4.

So it is ok for me to selftest and rely on my INR-number.

Best wishes from Kerstiin in Stockholm


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