SLE - sharp pains in head

You should see your doctor or go to the emergency room immediately.  Your pains could be from lupus but also could be something else. 

Don"t wait.  That type of pain is not normal.

Bill

Jessica,

You should talk to your doctor about your meds.  If you are having flares you either need to step up the dosage or change meds to find something that controls your lupus.  How much prednisone are you on?  Any other controlling meds?

Bill

Jess,

You can't expect ER docs to know how to treat AI diseases like lupus.  They are just for times when you can't see your rheumy.  Time to go to your rheumy or even get a second opinion.  If plaquinel is not controlling lupus then another treatment should be considered.  Plaq is just a first level of treatment and there are much more powerful meds or combinations that could be used.  Of course, no one wants to be on pred any longer than needed.  I have been taking pred since mid 2005 but the dose is so low now there are no side effects and probably no theraputic value....who knows.

I see many who go on and off meds and have a perpetual roller coaster of flares and temporary remissions.  Not good.  It takes a long, long time to get an immune system under control and some patients need controlling meds indefinitely.

Your headaches could be lupus related or something else.  You need to be alert if they continue and find out what it is. 

As for communicating I used to prepare all my questions in Word and ask them one by one.  The first time I visited my rheumy at Northwestern I had 26 questions.....he and his associate answered every one of them patiently.  Now I have few and the main debate I have is getting off my meds but that is another subject.

 

In my case they evaluated for an emergency and weren't concerned. Rheummy believes it is an irritation of the nerve over my left ear.

That said, I would certainly call the doctor immediately because,as we all know, everyone has different symptoms and issues. Better to evaluate and rule anything serious out.

Jessica-

When I was first diagnosed with lupus I was getting those headaches, and they were excruciating. I would probably have to say worse than any other individual symptom of the SLE. I was lucky enough to have the butterfly rash show up during a visit to my allergist, so I was diagnosed fairly quickly after my symptoms and ailments started. That was three years ago, but in the first few months, I was in the ER almost once a week because the headaches were so bad, I couldn't eat and I missed a lot of school. I rarely got them after about three months of being on plaquenil. But the ER was definitely no help at all. They let me lie in a bed for hours while they took blood, told me it was probably just a migraine or PMS, and proceeded to prescribe me pain medication that I've had an allergy to since I was 2!

Definitely better to get things like that checked out. As a nursing student I usually know what the "worst possible scenario" could be with a certain symptom; sometimes I wish I didn't know! Pain like that could be caused by an aneurysm or a clot (or other non-life-threatening things, of course). Please rule out the first two before you do anything else!

Kathryn