Autoimmune Retinopathy AIR

[Mike Bartolatz]

please contact DR lewis at Baylor or DR CAllanan there in Texas for input. their contact information can be found at http://www.uveitis .org in the PATIENT information section of the site.
I seriously doubt that diet will treat AIR. it can easily become a blinding disease process which requires systemic drugs to stop the progression to these blinding consequences.

wish you the best,
Mike

[tkrueger]

Thanks, Mike. I definitely am following my retina specialist's prescribed treatment of steroid injections in my eyes and then systemic steroid therapy if the injections don't stabilize the disease. However, I also want to do anything within my control that may possibly help. There is empirical evidence that autoimmune diseases in general (psoriasis, lupus, multiple sclerosis, etc) can be somewhat controlled by a specific diet. It is by no mean my only defense, just one more thing in my arsenal against AIR.---Terri

[Mike Bartolatz]

AIR requires more than steroids to try to control. it takes a combination of drugs such as Cellcept and cyclosporine etc to quiet the beast down.

mike

[Hawleyhome]

Hello, my name is Melinda. My husband has been diagnosed with Azoor? Autoimmune retinopathy? We have been all over the country to get a diagnosis. We live in little rock, and have been to University of Tn. 2010, Barnes in St Louis 2011, Dallas T Texas Retinal Foundation 2012, New York Columbia 2012, and finally Ann Arbor. We saw Dr. H in April 2013. The physician in Dallas Dr. Wang diagnosed David with autoimmune retinopathy even though he did not have the antibodies, and we did a round of IVIG. He had no changes after one week of infusion, then he put him on cellcept, and prednisone. In August we went to New York, and saw Drs. Yannuzi, and Odel. They felt like he had autoimmune retinopathy,but with no antibodies, decided to stop the meds. We had more blood drawn and sent it to UCDavis about 4 months later, no antibodies again,so we redrew and tried again. In the meantime he had chest X-rays, CT's abd pelvis and chest, then a pet scan. All normal so no carcinoma. He has been checked for skin lesions,and all is clear. Dr. H put david on the "cocktail", and drew more labs. We are waiting on results now. His central scotoma in the left eye is quite large, the right eye is progressing rapidly now. Glare seems to be the most difficult thing. We have seen a low vision Dr. And he has numerous different shades of glasses, but none are working. I read in one post something about Corning 527? Lenses. I am curious if we should look into them. He wears two pair of sun glasses now during the day, and if outside for an extended period, he has difficulty for days with severe glare. Our home looks like we are vampires,no lights. I guess it saves on electricity any suggestions would be appreciated. Thanks! Melinda

[Mike Bartolatz]

Melinda,
first of all welcome to the group. hopefully others with AIR will post soon to your questions. about the only thing I can think of would be Welding goggles to cut out the light causing the photophobia for your husband.

you are in good hands with DR H. let him 'drive the bus' regarding treatment for your husband.

Wishing you the very best,
mike Bartolatz

[Hawleyhome]

Mike,
Thanks for the idea! Am going to lowes to get some tonight!

[lizj56]

Hi,

Been awhile since I have posted but thought I would update all of you on my situation. I actually improved on my Goldmann Visual Field last March 2013 when I went to Dr. Heckinlively. Especially in one of my eyes. I always have believed mine was from an injury back in 1999 and when I took the infamous cocktail, which is hard I agree to handle, I actually reduced my antibodies down to one which they said could be something that is not related to the AIR. Anyway, I cut back on the medications and totally have stopped taking the cyclosporine but still remain on a low dose of prednisone and 3 cellcepts a day. Seem to just be stabilizing but good considering the alternative of progressing. When taking the prednisone I have continually had a reclast infusion every year and take calcium and Vitamin D3 as you need to take care of your bones if you take it. I already had osteoporosis, only in my hips, and since having the treatments despite the prednisone have stabilized that as well. I was told if I would stop taking the prednisone I actually might improve and not just stabilize. Anyway, my cataracts have seemed to lessen as well but still have them slightly. Dr. H says to hold off doing anything until my vision with contacts is worse. I currently have 20/25 centrally and just don't see much in the peripheral except a few places. Kind of like a donut blindness. So hopefully those who truly have AIR will try the cocktail with all the vitamins as I believe it is why I am not blind and before I started the treatment my antibodies in my eyes were in great number. and to be down to one is quite a blessing although I still would like a treatment to restore the vision and keep watching the research for regenerative types of growth. Hopefully some day. Hope to hear how others have progressed over time as well. Not an easy journey. Liz

[Hawleyhome]

Hi,

Got the results from the blood work! We finally got a diagnosis, David has the antibodies. This has been a long time coming. After two years of wondering, and numerous blood draws sent around the country! Now we know we are on the right path, and hopefully the "cocktail" will stop the progressive vision loss. Dr. H. thinks maybe we should get a bit more aggressive, and do either more IvIG, plasmapheresis, and maybe intraoccular injections to help halt the progression, as we wait for the "cocktail" to start working. We have only been on it since April, and it hasn't had enough time to slow down the progress. This is a terrible disease, and very difficult to treat. Just thankful that we saw Dr. H. the problem will be getting the insurance companies approve the treatments.

[Mike Bartolatz]

Hawley,
I do pray that the Insurance companies will pay for meds for your son. I wouldn't wish this disease on anyone BTW as it can make for a difficult life. Please continue to let us know what you and
DR Heckinlively decide for David.

wish him the best please,
mike Bartolatz

[Mike Bartolatz]

Liz,
I'm glad you have been able to get those eyes quiet and vision improving from whatever it takes. please let us know how things continue for you as I really do care about our members,

wish you the best,
Mike Bartolatz

[Hawleyhome]

Hello all,

Was wondering if any of you with AIR have difficulty with severe headaches? My husband David is having severe headaches especially in the middle of the night that wake him from his sleep. He takes ambien at bedtime, and sometimes hydrocone 5mg for his headache if he has one in the evening, but he is still wakes up, usually around 3am, with severe headaches. MRI of his head is negative, B/P is ok. Any thoughts? We aren't sure it's not from the eye strain,he is still trying to work. If anyone has any ideas, would appreciate your input!
Thanks,
Melinda

[Mike Bartolatz]

have they tried any of the 'headache' meds? I take one and it has helped me reduce the number of headaches. brow pain is common with uveitis BTW. temporal pain is another issue as it can be vascular in nature caused by temporal arteritis.
I also have very thick blood which has responded to blood thinners and which may contribute to fewer headaches.

BP goes up at night, he might consider taking BP meds at bedtime. this is often done today because heart attacks frequently occur after midnight before one usually takes BP meds.

wish you the best,
Mike

[Hawleyhome]

Mike,
Thanks for the response. Are you talking about something like Imitrex? We have taken his B/P at night, he takes
Lisinopril daily, but it seems to be controlling it fine. Last night running 126/74. He says he has a lot of pressure behind his eyes. Sinusitis not a problem. All the Drs. Seem to be stumped, and not really concerned about the headaches too much. They just give him lortab, which isn't really helping. I have a tendency to believe that migraine meds may be helpful too! We just have complained about the headaches over and over, and they all don't seem to know what is causing them, and they act like it is an unusual symptom. I guess we will ask the rheumatologist again, and ask about something for migraines.

Thanks for the help,
Melinda

[Mike Bartolatz]

yes I take propanalol which is a generic first generation headache med. it helps a lot. I also take lisinopril and I take it in the evening rather than the morning. MY BP is lower in the morning this way and my heart rate is also lower.
I have a history of strokes now so I have to use blood thinners and vascular dilators etc. no more major headaches.

take care,
\Mike

[lizj56]

Thanks so much Mike for the kind sentiments. I too have suffered from migraines and sometimes wonder if it is not an autoimmune condition as well but who knows. I have used the maxalt/imitrex type meds but don't like the side effects. If I truly have a full fledge extremely painful one I will ask my doctor for a Nubain shot which basically knocks me out but feeling the pain roll off is nice. I do not seem to have them as much now but think different foods or weather conditions can bring them on plus having visually impaired sight cannot help. Another shot that helps but takes longer is a toradol shot which really is more effective long term and you can operate fine. I only have at the most 2 or 3 a year that become so severe I need knocking out and they now have the toradol in nose spray form. Toradol is too hard on the stomach so pill form is out of the question for me since I have upper irritable bowel syndrome. Guess you just have to try different things but have learned to watch what I eat and drink but the weather and my sight are out of my control. Hope this helps.