Lupus + Hughes syndrome

[Naomi72]

So about 6 months ago I was diagnosed with lupus now I've been told I have Hughes syndrome and they have put me on warfarin 5mg a day as well as azathioprine 3 times a day and hyroxychloriquine twice a day . I have tiny blood clots on the brain 😳 does anyone else have the same ?

[Puska]

APS can certainly be secondary to lupus but it sounds like your medical team are really switched on. I have APS and lupus also and experienced a rare type of DVT.

[AnnNY]

I have both as well. Actually lupus-like UCTD.

No one has seen a blood clot, but I was short of breath when I started anti-coagulation and that has cleared up. The theory is that it was micro-clots.

There is a good Sticky-blood forum here. The know a lot about Warfarin treatment.

It is really good that you have been diagnosed so quickly. A lot of people have even more problems getting treatment for APS than lupus.

[Bacardibabe76]

Hi

Sorry about your diagnosis. I have both lupus and APS too. Not on warfarin, having issues with my brain too but they can't see any clots. Temporal lobe not working.

There is a forum on here called sticky blood Hughes syndrome (or to that effect) they are fab and knowledgeable

Best of luck

[Ndaywalt]

I have both also since i was younger. They currently have me on xarelto for it was on warfarin before. I had 5 tias due to clots on the brian. And a long list of other problems due to it now.