Effects of vasculitis on the brain

I have Lupus, Scleroderma, pulmonary hypertension and small vessel vasculitis. The vasculitis is wreaking havoc on my brain and eyes, resulting in major loss of cognitive skills, as well as diminished eyesight and frequent changes in vision.  These symptoms are getting worse and I am concerned.  I cannot find good information on the web about these effects and the prognosis.  I can deal with being sick and terminal, but I'm having a hard time dealing with the near-constant brain fog and visual problems.  Could I lose my eyesight? Could I lose my eyesight without also totally losing my brain function? Since this is the result of small vessel vasculitis, I assume that if one was affected, the other would be as well. Can you provide any information about this issue and/or direct me to good information about it?  Many thanks.
CJ Walters
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[Kevin Pho, MD]

Vasculitis can certainly be associated with a loss in eyesight.  There are many types of vasculitis and some are associated more eye symtpoms than others.

One type of vasculitis associated with a loss in eyesight would be temporal arteritis - a type of large vessel vasculitis.  Permanent partial or complete loss of vision in one or both eyes has been observed in 15 to 20 percent of patients in most series. Impaired vision is often an early manifestation of the disease. Affected patients typically note an abrupt partial field defect in one eye, which may progress to total blindness. If untreated, the second eye is likely to become affected within one to two weeks. It is rare, however, for patients to become completely blind in both eyes.

Workup would typically involve an opthomologic referral and examination.  If temporal arteritis is suspected, a biopsy can be performed.

Other forms of vasculitis may cause a loss in eyesight - but may not be evident to the degree of temporal arteritis.  I would suggest a referral to an opthomolgist for further evaluation of your symptoms.  

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Thanks,
Kevin, M.D.

Bibliography:
Hunder.  Clinical manifestations and diagnosis of giant cell (temporal) arteritis.  UptoDate, 2004.

[BorgQueen]

I have Lupus, too. I have Vasculitis, too. I had it(Lupus Vasculitis)so bad that it was quite literally pushing my eye out of the socket. I still have vasculitis, but at least I haven't stroked or lost my eye. YOU have a VERY VERY complex case. Your doctor(s) should feel no shame in contacting the Cleveland Clinic-they are super and pretty much the go-to guys(and chicks) for Vasculitis. If your doc seems reluctant, you might contact them about a second opinion consult.
Your issues are all very serious, and interplay in a complicated manner, in addition to the meds you must be on. You need top-notch folks on their best game.
PS, you can take my pulse by LOOKING at my neck!Sometimes vasculitis just settles in for a long stay.
  PPS I mean it about contacting or having your doc contact Cleveland Clinic!