Idiopathic Orbital Inflammatory Disease

[Shawn61]

I have IOI and have been looking for answers for self help and other people’s experiences.  I’m receiving treatment from my doctor.  Lots of articles on steroids (doing that) but is there something to help?  Had bunches of tests and a big biopsy and no known cause.  Would be nice to have contact with others who know what it’s like to have this incurable condition and what road they’ve taken to manage it.

[JohnHaganMD]

Your problem is not going to be helped by home remedies or homeopathic medications. You can help yourself by leading a healthy lifestyle, not smoking or using nicotine or cannabis and eating a healthy diet and not being overweight or obese. These things increase inflammation in the body as does excess alcohol.

[Shawn61]

I’m aware there is no cure, and that lifestyle choices are important, of course, but I would like to know if other people with Orbital Inflammatory Disease have  encountered means to bring some relief, not a cure.   Since my condition is idiopathic there’s not a good reason why I have it, so hearing other people’s journey may be very helpful to me.  I’ve also read several articles suggesting cannabis actually can have an anti inflammatory effect on the body.

[JohnHaganMD]

You can read anything and everything on the internet.   Cannabis has been shown to be toxic to retina ganglion cells causing injury similar to glaucoma. Moreover the ganglion cells are brain cells and a proxy for what chronic weed use does to other neural tissue accounting for the permanent loss of IQ in young frequent users.   Not sure why so many people are down on Big Tobacco but believe all the pro-week Big Weed Industry puts out. I got two emails today from brokers trying to sell stock in cannabis companies.  

[Shawn61]

Have you any ideas about the effectiveness of curcumin, green tea and other anti inflammatory foods to help suppress the inflammatory response in the body?  I have an appointment later this month with a rheumatologist per the instructions of my doctor to see if there’s a medication to assist with what he believes is a rheumatoid response going on in my eyes, but I’d like to be able, if possible, to do what I can and not rely on drugs alone because of the detrimental side effects.  As you might guess this is rather frustrating and sometimes depressing disease, especially since there’s no explanation why it happened.  I’m trying to be proactive and positive as best I can.

[JohnHaganMD]

Those are all helpful and healthy supplements. However you must realize the inflammatory process behind your eye(s)?  Is so intense and serious it can destroy your sight. So food and supplements cannot and will not do it alone.  A rheumatologist is just what you need.  Your problem is considered an autoimmune disorder like lupus, rheumatoid arthritis, etc.     The cases I’ve managed in my career have done will with oral antiinflammatories managed by rheumatologist and ophthalmologists.  Many cases ‘burn out” and treatment can be stopped after several years.