Author: Margo (---.dsl.intrex.net)
Date: 01-04-04 18:38
I recently replied to some questions regarding sarc and eye problems on the General Questions thread. I would like to repeat it here:
Norman,
Trevor asked me to share my experiences with treating the eyes. Sorry it's taken me a while to respond, we had several trips in late December. I hope the topic is still pertinent.
My daughter has had uveitis for two years. Her major problem is inflammation in the anterior segment of the eye, causing pain and photophobia. (Sarc can cause other problems in the eyes, such as floaters, blurred vision, and inflammation in other parts of the uvea, tear ducts, etc.)
She has been treated with prednisolone eye drops, which do decrease the inflammation while they are being used (though the inflammation returned in a more severe form when the number of drops per day was decreased). Steroids, both oral and in eye drop form, are also associated with the formation of cataracts and the development of glaucoma. Uveitis, by itself, can also cause cataracts. She has cataracts in both eyes, clearly exacerbated by the eye drops (in the opinion of the ophthalmologist). She is also taking methotrexate to treat the uveitis, and homatropine eye drops at night, which dilate the pupil.
After we learned about the Marshall protocol, and after much searching for a supportive physician, my daughter began taking Benicar, and then minocycline. We later added azythromycin, at the suggestion of B. Wirostko, an ophthalmologist who co-authored several papers about the presence of cell-wall deficient bacteria in the vitreous fluid of patients with sarcoidosis or rheumatoid arthritis.
We haven't seen clear evidence that these antibiotics are helping. We suspect that the tubules that circulate fluid around the eye are less inflamed, perhaps because of the Benicar. In a recent post, Trevor has wondered if the prednisolone eye drops are interfering with the antibiotics.
If you can, I would try Benicar and antibiotics without prednisolone eye drops. It can be very difficult to stop the prednisolone eye drops. The Marshall protocol, minocycline first, then slowly and carefully adding azythromycin, is the approach we have taken.
Although uveitis has more than 70 identified causes, it is still a rare condition, and many eye doctors have never seen a case. One needs to consult a specialist in uveitis to find someone with some experience. It is rare for these specialists to recognize that cell-wall deficient bacteria in sarcoidosis trigger the inflammation of uveitis. However, many other ophthalmologists don't have the background to fully recognize the uveitis. I don't know the extent of your eye problems; it might be helpful to get an evaluation by a specialist in uveitis, even while recognizing that you might not follow the recommended treatment (which is likely to involve steroids or other immune suppressants). You can get referrals to specialists at www.uveitis.org.
I hope this is helpful.
Margo
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They do reduce reduce vasculitis (which should help your eyes and heart).