Sticky Blood-Hughes Syndrome Support
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A bit low, and advice welcome

Been really poorly for the last 6-7 weeks with killer headaches (never suffered from them before) zero energy, hot one minute shaking the next. Anyway, as per my last post my GP thought it was giant cell and prescribed 60mg prednisone a day. Unfortunately, aches and pains improved but not the headaches.

Long story short, appointment with rheumatologist yesterday (first visit as moved recently). She seems certain that Lupus or sjogrens not to blame, didn't mention APS but said she thinks it is a small bleed in my brain and has requested an urgent referral to the neurological clinic.

At home, fretting (not something I usually do) and wondering, well let's say not a lot positive. Correct me if I am wrong but I thought APS would cause clots if anything. I am on daily Clexane injections so my anticoagulation should be controlled.

Any thoughts, ideas, suggestions welcome

2 Replies

Hi Julie sorry to hear you are having such a difficult time. id try not to worry. The problem is that Dr's are so drilled into automatic symptom checkers in their brains, that when they have ticked all the other boxes and something is still staring at them like constant bad headaches, they have to think about other things like a small bleed - especially if you are on anticoagulants. Dr's who are treating general rheumatological diseases are still not fully happy when prescribing anticoagulants that are over and above those given to people without our disease i.e. they don't have sticky blood, so they will rush to judgement which is not a bad thing if in a worst case scenario something does happen.

Perhaps your Heparin is just not "doing it" for you at the moment. It has a shorter half life than warfarin so just may not be controlling things. Sometimes adding aspirin to your regime can help but not until they get to the bottom of what going on now.

I get like you too but it eventually dies down, I never get to the bottom of what causes it. 60mg of steroids is a high dose! Im not sure I could have tolerated that! Try not to fret it will only make the headaches worse. Do some meditation/relaxation technics daily.

Keep us informed of your progress.


Thanks, just not functioning right at all, normally clear headed and objective but baby and bath water both down the drain....


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