Are your eyes also dry? Whenever my lupus flares and the inflammation "goes to my head," it affects my eyes, ears, and cognition. My eyes get very dry, sore, and vision gets blurry. My sight never totally blacked out, but it has grayed and diminished. Have you ever been tested for lupus?

Hi im45notcrazy. You could be describing a prednisone side effect. Please see the eye doctor ASAP.

I have glaucoma from pressure in the eye caused by prednisone. If I need to go up on the medication due to a flare, then I will go to the eye doctor for a fast pressure check. I also have regularly scheduled eye visits every four months.

If you are not on prednisone or a DMARD, then please see the eye doctor anyway.

Keep us posted!

Hi im45notcrazy would be a good idea to see the eye doctor. The Rheumatologist can't help with your eyes. I have been having treatment for AMD and a macular hole in my right eye during my treatment for PM. My sight has stabilized but still need to be checked by an eye specialist every three months. My problems with my eye I believe are associated with PM not the prednisone. Both the disease and the prednisone can cause eye problems. Best check it out with the right person. Autumm

I also have trouble seeing later in the day, went to the Ophthalmologist and he sees cataracts in both eyes. a side effect of steroids. I will have the first one done Jan 23rd. Not sure when the second will need doing.
Eyes are so delicate, please don't wait, make an eye appt asap with an Ophthalmologist, not the doc for glasses only, you need a full MD to check those precious eyes...

Hi Shawna. You are so right. I am sorry to hear you need your cataracts doing but I know its very successful these day. Best wishes and let us know how it goes. Autumm

I find it difficult to read as my eyes go blurry.
My specialist said " the eyes are muscles and myositis affects muscles"
I have found I need a new prescription each year.

My eyes get blurry as well when I'm in a flare (i'm a mystery as far as diagnosis goes though).. They get very very dry and feel stuck in the morning! they hurt when I move them as well at times. ..

Nanny - when your lupus flares how does it affect your ears? My ANA is always quite high, weird rashes etc.. but when I'm in a flare I feel like my head is in a bucket - my ears feel strange, hearing decreased and everything... it alsways correlates with flares and eye discomfort.. the dr's have no clue what that means haha

@bny806
In addition to the dry, gritty, hurting eyes, my ears start to ring loudly and my hearing diminishes noticeably. My ear canals get dry and flaky, and my ears can hurt. Also, my cognition declines. As you mentioned, it's like my head is in a bucket. BTW, my doctor agrees that it is inflammation. She told me that I was lucky and had done all the right things on my own, but not to wait the next time. Here's an article on lupus and the eyes.
http://www.lupus.org/answers/entry/how-does-lupus-affect-my-eyes

Here are 2 articles on ears affected by autoimmune disease. If you read down far enough, you can see that lupus is mentioned as being associated with this disorder.
http://www.asha.org/aud/articles/innereardisease/
http://vestibular.org/autoimmune-inner-ear-disease-aied

Lastly, here is an article on lupus-induced cognitive dysfunction brought on because lupus can attack the nervous system.
http://www.lupusinternational.com/About-Lupus-1-1/Cognitive-Dysfunction-.aspx

Thanks so much Nanny! I am going to take a look at those articles- I appreciate it! Funny you mention the cognition issues too.. When I have a flare, I too feel like I have lost a few IQ points.. like I'm in a fog.. and sometimes i feel like I'm almost on drugs or something... just off!! I get headaches sometimes with this all too.. it's pretty miserable..
It also affects my GI tract too, i feel like every organ is affected - palpitations during exacerbations too.. it's just not fun!

@bny806
I, too, get heart palpitations. Just coming out of a round of arrhythmia at the present time. Makes me feel faint and short of breath when it happens.

Hey there,
Yes, my vision is getting horrible as well. It started before the prednisone, but just continues to get worse. I have never had the black out incidents your describing. Are your eyes red? Mine are extremely red as well. My GP set me up with a eye specialist for next week.

Hi Melwally. I am so glad you are seeing an eye specialist. I have a macular hole and AMD. I believe its all come from the inflammation with my PM. No doctor has told me this. It's just odd that my eyes were at their worst when my disease was at its worst and now I am stable, my eyes too are stable. Hope your appointment goes well. Autumm