I have a question concerning the use of plaquenil. I have always been on 400mg a day without any complications for around 10 or more years. I see a ophthalmologist every 6 months for a check-up.
At the last 2 eye exams, my ophthalmologist has insisted I'm on too high a dose for too long of time and that I am greatly risking my eyesight - even though he has seen nothing at this time that would indicate a problem. He warned that by the time he would be able to see a problem, it would be too late to reverse and that even if I stopped plaquenil at the first sign of trouble, it would continue to harm my eyes for several months. Any damage would be permanent.
I told this concern to my rheumy who disagreed, but lowered my dose to 300mg because I was concerned. She also increased my methotrexate. As soon as I lowered the dose my malar rash has become a problem - it's horrible, actually - people are always staring at me. Make-up doesn't even begin to cover this mess.
So, I go out and buy the latest edition of "The Lupus Book" by Dr. Wallace who states his pet peeve is ophthalmologists scaring lupus patients about the dangers of plaq. He says it's very rare and if caught early it's reversible.
Now I'm torn....which to believe??? I would love to go back to my higher dose but I also know that the book - while the latest edition - is a couple years old and info. changes.
What do you tell your patients about the use of plaq?
Before you fire your rheumy, please note that just because you have a positive ANA does not mean you have lupus. There are over 100 autoimmune diseases that can cause positive ANAs with RA being the most common autoimmune disease. Not too mention there are perfectly healthy people who sometimes test positive. Unfortunately, there is no single test to confirm or deny a dx of lupus, which is why it can be hard to diagnosis.
Please understand that symptoms like joint pain and fatigue can be caused by several diseases - not just lupus. Lupus is dx by using a set of 11 criteria - if you have four of the criteria, you are believed to have lupus.
My suggestion would be to print off the list and circle the ones you believe you meet and take the list in to discuss it with your rheumy.
Over the years, I have noticed that rheumy's - compared to their other peers - are reluctant to dx ...they seem to see everything as shades of grey.
As a person who took years to get a dx of lupus, I know how frustrating that can be.
Also note, it can take 6 months to see the full effect of plaquenil. So keep taking it.
I hope you get answers soon and more importantly relief from all your symptoms.
Hang in there!
Are you talking muscle pain? I use flexeril daily for neck muscle pain. You should have your doctor look at your arm - especially if its just one arm hurting as I don't know of lupus just attacking one arm.
Sorry you are feeling so crappy! Lupus can cause some of the symptoms you are feeling. Have you asked your PCP to run a ANA test or have you been evaluated by a rheumatologist? You should talk with your primary care doctor and just ask him/her if lupus would be a possibility as they would know your condition best.
I've had more trouble with lab work over the years - even at the Cleveland Clinic - where on the same blood sample there would be inconsistencies like the above problem....sigh....I use to believe in test results, but not so much anymore.