optic nerve vasculopathy and plaquenil

[illinwithoutacause]

after suffering from fatigue, eye pain, vision changes, headaches, muscle twitches and other neurological symptoms, i finally got in to see a neuro-ophthalmologist who noted that the arteries feeding my optic nerves were small than he would expect for someone my age (42).  he said he suspected lupus or another autoimmune disease and referred me to a rheumatologist.  all my blood work has come back normal, but my rheumatologist still feels that my symptoms are related to an autoimmune process and has started me on plaquenil.  she indicated that this process could have been triggered by my pregnancy which was incredibly stressful, or possibly a viral infection.

i was, and still am, apprehensive about taking plaquenil in the absence of a specific diagnosis, although i am following my doctor's instructions at this point in time.  my main concern relates to the compromised state of my immune system in the event that i am really dealing with a viral infection.  could it make my vascular issues worse?  i have read that viruses like epstein-barr or herpes zoster can result in the vascular abnormalities observed by my neuro-ophtho, so would an immuno-suppressant medication like plaquenil leave me even more vulnerable to the effects of these types of infections?

i just don't know enough about all of this and want to feel good about the direction i am going in with my treatment.  i am going to raise these questions with my rheumatologist as well, but just thought i'd run it by folks here as well.

thanks in advance,
binx

[illinwithoutacause]

hi wanna:  (nice to see you on this board.) i just went for a baseline retinal exam on friday and there is one other test that my neuro-ophthalmologist is going to run as well to keep track of any eye-related side effects that may arise.  he said he will repeat them every 6 months to a year.  

i also hope that i have positive results with this medication.  i am just nervous about side effects since i am generally pretty sensitive to prescription meds.

hi lori:  i have seen two rheumatologists.  the first one checked ANA, sed rate, and a battery of other tests to check for inflammatory processes, all of which have had normal results.  my neurologist also did a lumbar puncture to check for the presence of CNS vasculitis which was negative.  in addition, i had a brain MRI to double check and that was also normal.  the second rheumie initially thought i had autoimmune thyroid problems, ordered thyroid blood testing--TSH, antibody testing, and a thyroid ultrasound.  those blood tests all came back normal as well, but my ultrasound revealed two very small cysts--too small to biopsy--and some heterogeneity of the gland, but nothing truly indicative of thyroiditis.  given my symptoms, and history, she is pretty convinced that i have an autoimmune disease, like i mentioned in my original post.

thanks for any feedback you might be able to provide.

best wishes,
binx

[Lori707]

How many rheumatologists have you gone to?
What kind of tests did they give you?

[Want to feel well!!!]

Hi bix...

While taking Plaquenil it is important to have your eyes checked regularly.  Perhaps you could ask your ophthalmologist about the vascular issues.  

Plaquenil is usually well tolerated and has been a standard in AI treatment so I hope you have an equally good result.

Hope you find some relief soon.  Good health to you.

Wanna :o)