Rheumatologist & Ophthamologist don't agree

[ronie317]

I was diagnosed with SLE (lupus) in June of 2009. It was because of my off the charts positive ANA tier, sed rate, and other high lab numbers that I don't remember along with severely inflammed eyes with swelling (iritis) that led to my official diagnosis. Since then my eyes have not returned back to normal. I keep having recurring iritis that still can be very painful and disrupts my everyday living. My Ophthamologist says I need stronger treatment that he can't give and that the Rheumatologist needs to basically get my Lupus under control so my eyes will be better managed. My Rheumatologist says my Lupus is quiet and doesn't think the iritis is a manifestation of my Lupus. The Opthamologist says Iritis almost always is in connection with some other autoimmune disease. They keep going back and forth about treatment. Methotrexate with Lotemax steriod drops calmed my eyes down for a while, but when I was taken off the Methotrexate last year I haven't gotten a break with the Iritis flares. I can tell it's slowly damaging my eyesight significantly in my right eye. The scare tissue is very bad in the right eye more so than the left. My Rheumatologist just put me back on Methotrexate yesterday to see if it would help. I also have Fibromyalgia and I keep pointing out to my Rheumatologist that Fibro doesn't affect the eyes, nor cause brain lesions, which I have as well. He tends to chalk everything up to being "mostly" Fibro issues. What do you think

[Mike Bartolatz]

I am not a doctor but I have to agree with your opthalmologist. you may have to get another rheumatologist on your team or get an Ocular immunologist who knows how to prescribe and monitor the DMARD drugs such as methotrexate in adequate doseage to quiet down the uveitis.
other drugs may be required to get you 'off all steroids without inflammation' as this is the goal of treatment. uveitis related to SLE often starts as iritis but then goes on to encompass inflammation in the middle and back of the eye as well. other changes can occur such as neovascularization of the retina, optic neuritis, cystoid macular edema with potential for detachment of the retina, glaucoma and cataract development. if you also have severe dry eyes from the SLE attacking the lacrimal gland, that can lead to corneal inflammation with potential for ulceration and infection of the cornea and conjunctiva and sclera. all of this is potentially sight compromising or worse.
there is a list of Ocular Immunologists, highly specialized opthalmologists trained to treat your underlying cause and who can hopefully prevent many of teh complications mentioned above at http://www.uveitis.org located in the PATIENT information section of the site or tell me where you live and I will tell you whom I would seek consultation from near you.
stay away from Plaquenil as it will not treat uveitis. also stay away from the TNF A blocking drug Enbrel as it too will NOT treat uveitis and can even cause it in some individuals. Do whatever it takes to get your uveitis under control. MTX has been shown to be very safe, not causing cancer at a higher rate than the general population in a study done a year or so ago.

Wishing you the very best,
Mike

[ronie317]

Thank you so much for your insight and knowledge. It only confirms what I felt and researched as well. I live in Roanoke Virginia and I'm willing to travel to get this iritis under control. Unfortunately I have been on Hydroxychloriquine (plaquenil) for a little over a year now as treatment for the Lupus, however, I don't think it is helping me much.

[Mike Bartolatz]

please contact DR Quan Nguyen in Baltimore. he is an Excellent Ocular Immunologist. alternative to him would be DR Foster in Cambridge, the best ocular immunologist in the World. you can email either doctor to set up an appointment. indicate that I have sent you and you should be able to get an expedited appointment. Dr Foster has the advantage of being a board certified Rheumatologist as well as an ocular immunologist. Dr Nguyen was trained by Dr Foster at harvard and is also a board certified Retina Specialist. make sure you get an appointment with Quan Nguyen MD at John's Hopkins in the RETINA dept not the Uveitis dept.

Take care,
mike Bartolatz

[ronie317]

Thanks Mike. I am definitely working on getting an appointment ASAP. This has given me new hope when I was truly ready to give up. I will keep you posted on my progress.

Thanks again.

[Mike Bartolatz]

go to http://www.uveitis.org to the PATIENT information section to access the USA Specialist list developed by Dr Foster to obtain the contact information for DR Quan Nguyen at John's hopkins retina clinic. don't use anyone else near you.

you are most welcome too so keep me informed,

I haven't been online much as I had a stroke a couple of weeks ago. my vision is a bit blurry at the moment.

Take care,
Mike