Autoimmune Retinopathy AIR

[Mike Bartolatz]

Actually you can ask Dr Foster if you like:
go to http://www.uveitis.org there you can 'ask Dr Foster' a question in a GENERAL way, not as it pertains to yourself so much. I can however ask a question of him personally too as he is my friend and I teach about this at the foundations online support groups http://www.uosg.org and http://www.parsplanitis.org I don't have too much information on AIR, with what I have posted in earlier threads of this topic. I do know that trauma to the eye can set off uveitis in ANYONE not just those with a history of uveitis. getting hit in the eye is a frequent means of contracting uveitis in kids and adults playing sports for example. it is also possible to have multiple things going on in the eye and body each from a sparate cause. one can have uveitis and then develop corneal problems or scleritis each with different cause but mainly the drugs are the same. in very difficult cases, IVIG is used as a last resort because is costs many thousands of dollars per treatment which has to be continued for a very long time.
many people I know have very good results with the Cellcept with cyclosproine combination. for others they have to move on to chlorambucil or other drugs. the main thing is to hit this stuff hard and get off the steroids if you can saving the steroids for another bout of active disease.

wishing you the very best,
Mike Bartolatz

[lynnofbretnwood]

Thanks, Mike for the information. My blood work test results from the Ocular Immunology Laboratory at Casey Eye Institute did indicate the markers for AIR. I have wondered if something else might be going on in addition to the AIR. I developed the photophobia about 19 months ago and it was slow at first but progressive. I had cataracts so the doctor said they were causing the extreme glare problem. After the first surgery I knew something wasn't right because I still had the extreme photophobia but I was told that I had not adjusted to the new IOL, etc. and they could not find anything else wrong with my eyes upon more examination. So, I had the second done about six weeks later and the photophobia in the newly operated eye did not go away. I knew something was very wrong and I saw doctor after doctor and they kept saying they were all puzzled. After I had the cataract surgery I noticed the haze started. I don't think the cataract surgery necessarily had anything to do with the haze beginning, perhaps it was starting and with the new, clear lenses in it became more noticeable. It has progressed to the point that my vision is like looking through pea soup sometimes. The artifacts (wierd stuff I see) also started af the cataract surgeries. One doctor I saw said that in my right eye it looked like he could see "bits of seaweed". He sent me to a retina specialist to see if I was a candidate for a vitrectomy. But, that retina doctor said that my vitreous was "unimpressive" and that a cloudy vitreous would not explain the photophobia or the "whiteout" I am having. Six weeks after I saw the retina specialist I had the ERG done which indicated problems with the cones. About 6 weeks after that I got the confirmation of the blood work indicating AIR. I have wondered if the extreme photophobia caused from the cone dysfunction and the fact that I have these artificial lenses has magnified the haziness or cloudiness that a "normal" person would not even notice. I live in Brentwood, TN but have considered going to other doctors for other opinions. I do appreciate any suggestions or thoughts that all of you have!! Lynn

[Mike Bartolatz]

if you are now in Tennesse, can you go to see DR Russel Reed in Birmingham, Alabama for a consultation.
with the genetics for AIR, cancer can appear in other ways or other parts of the body as the markers are basically linked to forms of cancer. what you describe can rarely be linked to 'masquerade syndromes' things like ocular lymphoma etc.
the floaters are NOT a part of AIR according to DR Foster whom I contacted regarding your case.
removal of the vitreous material and then performing Tests on it and pathogical exam by specialists immediately after removal should be done. I knew a Dr in Texas who they thought had pars planitis, I got him to go to Boston to see DR Foster and it was determined that he had ocular lymphoma. he also had a brain tumor but he was successfully treated by Dr Foster and all of the Wonderful specialists at Harvard Medical School.
after cataract surgery inflammaton inside the vitrous can cause the opacification of the lens capsule. YAG laser can blast a hole in the lens capsule and this will create a 'pin hole' effect allowing for better vision. haze can also be caused by protein shed from the cells in the vitreous. you need evaluation by an Ocular Immunologist such as Dr Reed.
his contact information can be found at http://www.uveitis.org in the PATIENT information section of the site on the USA Specialist list.
If I were you I'd make that apppointment as soon as possible. Of course Dr Foster in Boston is whom I tell you to see if you can afford that kind of travel.

wish you the very best,
mike

[Mike Bartolatz]

here is Doctor Foster's response to my question to him about your case:

"AIR is autoimmune in the sense that the immune system attempting to fight cancer somewhere as a side effect is also producing an antibody against recoverin or other retinal protein, causing retinal damage. Finding and curing the cancer is the primary objective. But immunomodulatory therapy may also be appropriate and effective, as I have seen in a couple of cases.



Hoping this helps,



Stephen Foster"

[Mike Bartolatz]

Alabama
Russell Read, MD Background | Publications
Assistant Professor of Ophthalmology and Pathology
Director, Uveitis/Ocular Inflammatory Diseases Service
Director, Ophthalmic Pathology Laboratory
University of Alabama at Birmingham (Website)
700 South 18th Street, Suite 601
Birmingham, AL 35233
Tel: (205) 325-8620 | Fax: (205) 325-8654

[BHM]

Hi folks, I've been a lurker here and have just registered. I have been diagnosed with Autoimmune Retinopathy(AIR). My vision started deteriorating in Sept, 2008. The diagnosis was undecided for some time. I am currently in an AIR study at the National Institutes of Health (NIH) in Bethesda, Md.I believe Dr. Heckenlively is a collaborator in the study. My treatment is 2 infusions of Rituximab. I had my first infusion this week and will get a second one in 2 weeks. I had no side effects whatsoever. If I show improvement by the 6th month I can possibly continue in the study. Rituximab is a chemotherapy drug used for lymphoma and Rheumatoid Arthritis. I am also on 20 mg of prednisone a day.

I have been unable to drive for about a year and my main problem is the haze. It's a white-out on beautiful days like today. I have somewhat decent central vision (through the fog) but I do have a very difficult time seeing, in spite of that, with my one eye being much worse than my other. All of my tests are abnormal...ERG, OCT, Goldman Field, Humphrey Visual Field, etc. I have the anti-retinal autoantibodies for AIR. You do not have to have cancer to have AIR. You can have AIR without cancer. Also, just because you have the antibodies doesn't mean you have AIR from my understanding.

I've learned a lot about AIR over this past year. It's certainly not an easy disease to diagnose.

[lizj56]

Hi BHM.. I will be very interested in how you come out with the treatment you are currently on. Curious how you came to know you had the condition and were you diagnosed with anything else prior to your diagnosis? Was the vision loss mainly or fully in the perpherial area and how long have you noticed the visual disturbances? Hope you are successful as I know it is very hard to lose the vision. Hope to hear from you.. Liz

[BHM]

I had my second Rituximab infusion yesterday. So far I have seen no improvement but it's early. They said if improvement is to occur it would be in 1 to 3 months. They did tell me on this visit that my photoreceptors are shot (in the damaged areas). So, improvement is not likely for me but I'm hoping, at least, for stabilization.

At first my doctors suspected that the cause of my vision loss was due to the drug Plaquenil since I had been on it for 14 years. I then proceeded to get other opinions and most said the pattern wasn't typical of Plaquenil damage. I went to an excellent doctor at Stanford who specializes in vision loss of unknown causes and he was the first to mention the possibility of AIR but was not positive. RP has also been mentioned.

My vision loss started with contrast problems and with difficulty seeing at night in 2008.I have a very small central part of my vision intact now and can still read. If you look at my Humphrey visual field most of the damage appears in the upper 50% portion of the field. The damaged parts are deepening. I still have some lower vision. The central part of my vision is getting smaller though as time goes on. I'm hoping the Rituximab will stop this from happening and preserve the vision I have left.

My interpretation of a beautiful day has changed. These days, a very gray dreary day is beautiful to me.....no sun to ruin it <g>.

[Mike Bartolatz]

I do hope the treatment works for you quickly. such extreme vision loss saddens me however. has distance vision been lost as well as peripheral vision? I don't have AIR but I've lost quite a bit of vision in my upper vision too. I'm really tall and walk into things easily when they hang down such as tree limbs over sidewalks. my side vision on my left side is also impacted and I walk into things on my left frequently. lots of scar tissue on my skull from this

Wish you the best,
Mike

[BHM]

I also walk into things, people, poles, etc. Unless they're directly in front of me I can do damage <g>. Anything overhead or just off to the side is out of my field of vision. Like you, Mike, my left side is worse than my right. Riding in a car is the best scenario. I suspect it's because my vision kind of fills in when there's a big picture way out in front of me.

[Mike Bartolatz]

I hate walking down some store aisles where there is s column out of nowhere that I'll run into when something catches my gaze and I look to the right leaving my left side 'blind' smacking into the column which hurts physically and makes me look like a clumsy fool. this happens walking down a sidewalk too when they put the 'sign' standards in the walk area.
scars everywhere on my body from falling, tripping on stuff etc.

wish you the best,
Mike

[lizj56]

Yes I can definitely relate to your visual field problems.. except my vision loss is the same for both eyes and I believe the lower visual area is the worse. Funny you talk of walking into things and the only thing you can do is laugh. I remember when I did not even know i had the condition I was walking in to a nice hotel to check into in florida and totally made a fool of myself when I tripped over the yellow warning sign about being wet or something... and trying to maintain my dignity the rest of the way to the check-in.. guess you can give others laughs.. and there is the time I remember being in a halloween store and running into a big pole and not realizing what it was so I apologized to it and to my dismay I saw the faces of those who watched me looking at me with a strange kind of look.. anyway, life goes on.. oh and one more.. when I was married I tried to give my husband my purse and realized finally the guy was a stranger.. he smiled but I felt so embarrassed.. anyway, no more stories.. won't tell you of the airports.. Hope BHM you will continue to keep me posted.. I know that after a year of treatment with my regiment of pills has stabalized so I hope it does the same for you... Liz

[BHM]

I'm so glad that yours seems to have stabilized. Mine has noticably deteriorated in the last 3 days. It's the haze that drives me crazy. It's a white-out sometimes. Does anyone else have that haze? I suspect my situation had gone on too long before I got to the right doctors. Too much damage occurred before I was able to get help.

I did have to chuckle when you said you tripped over the bright yellow line. I did that exact thing last week and fell right into the hotel door. I picked myself up quickly and hoped no one saw the incident <g>.

I'll continue to keep you posted.

Bobi

[jjeanm_putman]

Hello--My name is Jean---my daughter has been struggling with a diagnosis and treatment---has been going to Mayo Clinic and to be frank---we have been quite disappointed. She gets seen there by several different specialities. She had a positive antibody test for Recoverin and was checked for cancer which is not found. She was given methyl prednisolone IV and had no positive response to that. After her last visit last week, two Drs had different opinions. The autoimmune Dr. agreed to start her on the IVG treatment, but the Retinal Dr. stopped it and just wants to her do nothing for two months. Obviously this is a concern. And he hadn't even read her history because he didn't know many of the details including that she was having flasher. They agree on retinopathy but do not quite know what to make of the autoimmune portion.

My questions are two fold---where to find an ocular immunologist---we are in SD--and what forms of treatment are available. She is 38 and eye sight has deteriorated markedly in 1 year---has been to Mayo on 4-5 trips and so far the only treatment was the methyl prednisolone which was not successful---and to be sent home to do nothing for two months but let her eyes deteriorate is heart wrenching.

Anyone have any input? She is quite light sensitive---sees better at night and has lost a lot of central vision---did get a low vision evaluation and some aids. Jean

[jjeanm_putman]

Hello--My name is Jean---my daughter has been struggling with a diagnosis and treatment---has been going to Mayo Clinic and to be frank---we have been quite disappointed. She gets seen there by several different specialities. She had a positive antibody test for Recoverin and was checked for cancer which is not found. She was given methyl prednisolone IV and had no positive response to that. After her last visit last week, two Drs had different opinions. The autoimmune Dr. agreed to start her on the IVG treatment, but the Retinal Dr. stopped it and just wants to her do nothing for two months. Obviously this is a concern. And he hadn't even read her history because he didn't know many of the details including that she was having flasher. They agree on retinopathy but do not quite know what to make of the autoimmune portion.

My questions are two fold---where to find an ocular immunologist---we are in SD--and what forms of treatment are available. She is 38 and eye sight has deteriorated markedly in 1 year---has been to Mayo on 4-5 trips and so far the only treatment was the methyl prednisolone which was not successful---and to be sent home to do nothing for two months but let her eyes deteriorate is heart wrenching.

Anyone have any input? She is quite light sensitive---sees better at night and has lost a lot of central vision---did get a low vision evaluation and some aids. Jean