Autoimmune Retinopathy AIR

[lizj56]

Yes, I am glad things are holding up so far and no I was not part of his published work to the AMA last April but was after the fact. He seems confident in at least holding me to the level I am so I hope this is true as I can live with what I have although I really wish I would regain what I lost. Tripping is so much fun but have finally through a few experiences learned to look ahead. I have heard the Goldmann Visual Field test is the one of preference for people with retinitis pigmentosa or autoimmune retinopathy as it more accurate. Dr. Jampol from Northwestern, who was my original doctor insisted upon it although he did not have it at his facility. When my insurance refused to cover him and needed me to find someone in Michigan or Indiana, Dr. Jampol immediately told me of Dr. Heckenlively so at least he has given me hope as I did not lilke how fast my vison was fading and stabalizng to me is a blessing despite the side effects of the drugs I have to take. I believe they will come up with new ways to treat it down the line but if I have the ability to stabalize until they do I conisder that a real blessing. I will be glad to let you know of my February appointment and I will be very interested in your March visit too. Such a rare condition and it is nice to compare notes with someone who is going through what I am going through. I was going into a grieving process losing my sight so fast and now I have my hope back and a new lease so far.. It is just so hard to accept... anyway, could have dealt with it just preferred not to.. Kind of makes you think about life alot and how it could be without vision and of course I am reminded day after day when I cannot see as well as i use to and I want so badly to see a room like I use to. But as I said I am grateful for what i have and the stabalization thus far. Look forward to hearing from you again and will most definitely let you know the results of the Feb visit... Liz

[lizj56]

I forgot you asked me what line of work I am in and yes I do work with computers alot.. my job is finance and administration so at this point in time I am still able to do my work without too much problem.. my vision (cones) seem to be holding up thus far and is only my rods effected... the peripheral is mostly damaging downward but unfortunately the sides and up are too, just not as much.. liz

[mrsgary]

Are you driving? I do day-time but no night-time but it's been like that for awhile. Hate grocery store parking lots. Do your eyes burn sometimes like there's smoke in the area? Lots of questions I know, but as you say, nice to know somebodies in the same boat. There is another person that I have heard from that got my name from the iritis.org site. She's being seen at the NIH in New York I think.

Is your central fading without the contact lenses severly? I know what you mean about tripping and adapting to the dark.

Thank you for all the input and answers. By the by, I was taking 15,000 iu of Vitamin A picolinate and developed an extreme light sensitivity problem. Have you had that happen with the amount of Beta - Carotene you're taking?

[lizj56]

Yes I am still driving but only during the day as you are. The doctor told me this would be okay but to take extra precauton to look both ways which you should do anyway. Yes grocery parking lots are a pain and I go very slowly and must look 10 times to make sure nobody appeared out of nowhere.. Do not have the burning eye sensation but I am light sensitive. I was light sensitive before taking beta carotene so not thinking it effected that but really don't know. Never took Vitamin A Palmitate as Dr. Jampol and Dr. Heckenlively told me not to. Would be interested to know what the lady going to the NIH in New York is saying about her condition also. My central vision has remained pretty good and my vision is with my contacts 20/20 but I notice blurriness sometimes but then working on computers can cause that. Kind of nervous about the results I will receive on the 18th of February but it is what it is and I don't feel I have deteriorated to any degree if any. Just don't know how long they will keep me on the suppression meds and prednisone. Liz

[mrsgary]

Are you a migraine sufferer? I took Topamax for about year and my primary said that that caused a good part of the light sensitivity. Nobody can say for sure if the Topamax didn't cause the entire problem but it will be interesting to follow all of these TV commercials to see if someday an attorney isn't taking calls from people who ended up with problems after Topamax.

[Mike Bartolatz]

you mention difficulty with blur of vision while on the computer. most often this occurs because we forget to BLINK our eyes and this causes the cornea to dry out. make an effort to blink a few times a minute. we stare at the computer and by doing so we don't blink especially if our vision is a bit impaired in the first place. you might also try a good eyedrop like theratears lubricating eyedrop or a preservative free one like Refresh Plus in single use vials. you might be starting to get dry eyes so have your opthalmologist to a test for this. they put a piece of litmus paper in the inside corner of the eye and measure the amount of tearfilm you have. they also put a drop of dye on your cornea and conjunctiva to see if there are dry spots which shows a compromised tear film. the tear film protects the eye from infection as well as lubricating the eye so that the eyelid won't stick to the lens (very painful from my own experience).
usually it takes about two years on chemotherapeutic immunomodulation, off all steroids without inflammation before the DMARD drugs are tapered. it takes this long to retrain the immune system to stop producing the cells with the specific markers targeting your eyes.

I wish you both the very best,
Mike Bartolatz

[lizj56]

Thanks Mike for the information.. I had no idea it took 2 years to stop the antibodies.. where did you find this out? I did have an email conversation with a eye researcher on dogs who seemed to be having luck with dogs that had what I had so I've copied and pasted the article. Interestingly he said most of the dogs came to him blind... and as far as topomax.. well I tried that one day and my metabolism could not take it.. thought I was going to come out of my skin so discontinued.. stick with thinks that don't make me feel like I'm flying although I do take the prednisone but have an offset in the niravam (xanax) if it I start becoming shakey.

(His final Response) In some dogs it is stabilization of vision only, while in majority it is an improvement (these dogs usually come to us completely blind)


> Dear Dr.Grozdanic,
>
> Thanks for the reply and just want to know if the trials you are doing
> on the dogs are improving their vision or just stabalizing it. Either
> is nice but since I may have a similar treatment just wanted to know
> how much success you are having.
>
> Thanks,
> Liz
>
> On Tue, 28 Oct 2008 17:44:40 -0500
> Sinisa Grozdanic <sgrozdan@iastate.edu> wrote:
> > Dear Mrs Johnson,
> >
> > We are testing several therapeutic approaches for auto-immune
> >retinopathies in dogs. We believe that disease is very similar to
> >auto-immune retinopathies in humans. We are using systemic and
> >intraocular IVIg injections as a treatment of choice for these
> >patients, some dogs do get systemic steroids. As far as human therapy
> >goes, some specialists pursue systemic steroids first, while others
> >use systemic IVIg or monoclonal antibodies (alemtuzumab). Since
> >clinical presentation may vary between patients, your eye specialist
> >will give you the best advice in terms of which particular therapy
> >should be pursued, since all therapeutic approaches have their
> >advantages and disadvantages.
> >
> > Hope this helps.
> >
> > Sincerely,
> >
> > Sinisa Grozdanic
> >
> > At 03:40 PM 10/28/2008, Valenzuela, Dario [OIPTT] wrote:
> > Dear Liz,
> >
> > I am forwarding your request to Dr. Grozdanic. He is the inventor of
> >this procedure.
> >
> > Best wishes,
> >
> > Dario
> >
> > From: Liz Johnson [ mailto:liz.johnson@ancoproductsinc.us]
> > Sent: Monday, October 27, 2008 2:36 PM
> > To: dariov@iastate.edu
> > Subject: Question
> >
> > Dear Dario Valenzuela, Ph.D., M.B.A.
> >
> > I received a letter stating and I quote some acitivity for
> >antiretinal antibodies (RP Simplex), I am 52 and about 4 years ago I
> >started seeing changes after an eye injury so was wondering if what
> >you are studying has anything to do with what I am experiencing
> >possibly.
> >
> >
> > This is what I was told: "You would have a visual field and another
> >blood test for antiretinal antibodies. Depending on what he thinks,
> >he may not do anything else, he might do an injection or he might
> >give you medication to take - Treating AIR is in the research stage,
> >and we are trying to research the best treatments etc. The doctor
> >said that there is some activity of antiretinal antibodies, but he
> >wants to follow you to see if there are changes in 4 months. Is the
> >dog research you have performed the same as I am potentially going to
> >undergo and did any of the dogs just have some activity as I have?"
> >
> > If you can provide me with any answers I would appreciate it.
> >
> > Thanks,
> > Liz Johnson
> > Sinisa Grozdanic D.V.M., Ph.D.
> > Department of Veterinary Clinical Sciences Assistant Professor of
> > Comparative Ophthalmology College of Veterinary Medicine - Iowa
> > State University
> > 1471 Vet. Med. Bldg.
> > Ames, 50010 IA, U.S.A.
> > e-mail: sgrozdan@iastate.edu
> > Ph - laboratory: (515) 294-4389
> > Ph - office: (515) 294-6712
> > Fax: (515) 294-9281

[Mike Bartolatz]

Dr Foster has been treating with a corticosteroid sparing approach to treatment employing IvIg and other chemotherapeutic medications for many years. Dr Nussenblatt at the National Eye institute in Bethesda maryland uses them as well. they train Ocular Immunologists, highly specialized opthalmologists in the diagnosis and treatment of Ocular Inflammatory disease processes. I know of several of his patients presently on IvIg who are now stable.
his website at the Ocular Immunology and Uveitis foundation in Cambridge MA has allot of information on various forms of Ocular Inflammatory Disease processes, you can also ask questions of him personally as his email address is available there.

allot of this has gone way beyond research in animals using these meds in humans on a regular basis.

http://www.uveitis.org is his website,
I've been working with DR Foster's support groups for over ten years now. I also was invited by him to attend a medical conference given by him and the American Academy of Opthalmology where I heard the top specialists in the USA speak a few years ago back in Boston. as with any profession, some specialists are better than others. I can suggest one of these specialists for a consultation if you would like me to. Dr Foster is the BEST ocular immunologist in the World. I live on the West Coast in Tacoma, I do not get paid anything for my support work from anyone at any site that I post to so I have no personal interest in anything but helping people prevent blindness from this stuff.
I post to http://www.parsplanitis.org , http://www.uosg.org , the National Organization of Rare disease, NORD online site for eyes and Sarcoidosis forums too as well as this independent site, Iritis.org

two years is the length of time it takes to retrain the immune system for most forms of OID. once the white blood cells that target the eye by mistake are produced by various aspects of the immune system, they will continually replicate. if one tries to discontinue the meds before two years, experience has shown that the inflammation will return.

wish you the very best,
Mike

[lynnofbretnwood]

Good afternoon, All! I'm new to the group. I have been recently diagnosed with AIR. My husband is posting this for me since it appears my cones have been affected moreso than my rods. I have EXTREME photophobia and even the amount of glare from the computer screen is too painful for me to be on the pc myself. As a matter of fact I can't stand the light from the refridgerator! In the sunshine without dark, polarized sunglasses I am literally blinded by light! I haven't driven in over a year. Even with the dark sunglasses on I have lost contrast. My husband and my grandson now warn me of any upcoming steps, speedbumps on a parking lot, etc. because I can't see them. Fallin in a parking lot is not much fun as you well know. My indoor vision is not much better. We have attempted to make the house almost "cave" like. Liz mentioned not being able to see rooms like she used to and when my husband read that to me I almost cried. Indoors any room I go into seems to be smoke filled and I guess this is due to the haze I experience. I don't have much clarity beyond 2 or 3 feet. I currently don't read much (although I've always loved to) because it takes light to read and the light is so painful. I am in the process of trying to get some "readers" so when I HAVE to read I can do so without so much discomfort.

In addition to the extreme photophobia and thick haze I also experience all the wierd artifacts. Amoeba looking objects, flashes, orange squiggles, and what appears to be constant flickering lights. I have had one round of prednizone and two ocular injections of steroids in each eye. I am not sure if my symptoms have stabalized yet much less improved. I am interested in hearing more about anyone's experiences taking immuno suppression drugs. The IVIG has been mentioned but I'm not really sure how that works. I have seen a rheumatologist recently who has familiarize himself with the research being done and he has suggested that I give serious consideration to the IS Therapy as he thinks that might be the most beneficial.

I'm 62 years old and have had migraines since I was 18. I did take Topomax for about 3 months several years ago but no one I've spoken to seem to think medications have anything to do with causing AIR. I'm glad to find this site and hope we can all support each other. God bless all of you, Lynn

[Mike Bartolatz]

you have inflammation in the Vitreous resulting int the Ameoba like floaters which are an accumulation of fibrin shed from the vitreous membrane and cells and protein (flare) and exudative matter from possibly the pars plana depending on where in the vitreous humor they are located. the flashes of light are related to the vitreous tugging on the retina. since you are over 60 it might be a normal occurance as most everyone had the vitreous detach when they get older.
the colored squiggly lines are sometimes associated with optic migranes. mine have been both red and green in color when this happens.
I posted a note to you welcoming you to the site in the GENERAL DISCUSSION forum. I mentioned Dr Rosenbaum and Suhler at Casey eye Institute in Portland wondering if you had seen either of them.

you have more than just AIR going on with the extensive matter in your Vitreous along with the posterior stuff you mention.

do you have any autoimmune disease such as Multiple Sclerosis, systemic Lupus erythematosus, Sarcoidosis or systemic Vascular or granulomatus disease going on? Have tests been done to rule out various pathogens such as LYME, toxoplasmosis, catscratch disease, giardia, leptospirosis, leishmaniasis? or did you travel outside the USA prior to developing uveitis?

Wish you the very best,
Mike Bartolatz

[lynnofbretnwood]

Thanks for the info, Mike! I've been examined by a dozen opth/retina doctors and uveitis has never been mentioned. All have said that everything in the eyes look
normal, even the vitreous. Many, many OCT scans proved to be normal and finally the ERG showed abnormalities which was translated to AIR. Bloodwork was done
at the OHSU Lab (Dr. Adamas I believe) which showed non cancer related antibodies in the blood. According to the rhuematologist I have no other (secondary) autoimmune diseases and per an oncologist/hematologist (blood work and CAT scan) there are no cancers in the body. Earlier I was tested for Sjogren's Syndrome (blood
and Schirmer test) which proved to be negative also. Testing for Lyme disease and some of the other things you mentioned have not been done as far as I know. I have never been out of the Country. I have been told that all symptoms I have are related to AIR. The current doctor has deemed the condition as AINR but I've found several acronyms for Autoimmune Retinopathy. I am familiar with the Casey Eye Inst. due to research about the testing done at the OHSU Lab but I have not been there.

[Mike Bartolatz]

the Ameoba like shapes are common to intermediate and posterior uveitis. they are not the normal floaters that everyone talks about. I have them related to vitritis resulting from Pars planitis and posterior uveitis.
Casey is the best place in Oregon. If I were you I'd seek out another opinion just to play it safe.
which antibody markers were present? you can get a copy of the report and then we can do some digging to see what they are related to. did you have genetic testing for HLA Markers (human Leukocyte antigen) which impact how the immune system reacts to pathogens, viruses, bacteria etc. HLA markers and antibodies can suggest underlying autoimmune diseases. Molecular mimickry triggers an immune response. pathogens have proteins on their outer coat that resemble HLA Markers on the outside of our cells. they have the ability to 'unlock' the outer shell gaining access to our cells and is what causes the mistaken attack on our various organs to include our eyes.
call and make an appoinment with Dr Rosenbaum at Casey Eye Institute Please.

Wish you the very best,
Mike Bartolatz
PS: if you would like to 'talk' to me, I can give you my phone number. I live in Tacoma,

wish you the very best,
mike

[lynnofbretnwood]

If anyone with AIR has gone through the IVIG treatment or the immunosuppressant oral drug therapy, I would like to hear about your results. The use of the "chemo" drugs is very intimidating to me but I have heard that there have been some positive results using them. I don't know what kind of symptoms it reversed, if any, and was it more effective for AIR patients who had the cone dysfunction or the rod dysfunction? Any info that can be provided would be greatly appreciated. I've had two rounds
of the ocular injections (steroid) and 6 weeks of Prednizone but have experienced no improvement. Thanks, Lynn

[Mike Bartolatz]

Lynn,
I emailed Dr Foster to ask about your vitreous opacities which he indicated would be VERY unusual in an AIR patient. do you have the specific antibodies for AIR as they are definitive?
Dr Foster indicated that he would recommend a visit to Casey Eye for evaluation in case more than AIR is presently going on.
he also indicated names of two specialists in California for AIR as well if you would like their names.

wishing you the very bes,
mike

[lizj56]

Hello, I've been to the Kellogg Eye Center and found I had improved via the goldmann visual test in my peripheral vision area. Seems like it is mostly in the very outer areas ironically. This was the visit that showed the most improvement since being on the cellcept, prednisone and cyclosporine plus all the vitamins. Dr. Heckenlively told me I would be on the immune suppression treatment for probably 2 years total or more. I have rarely missed a pill and have timed them to taking them exactly as I should take them. Feel promise now and really hoping the improvement continues. I asked if I could expect more vision improvement and he told most definitely. He said the cells that are sick can be revived but the ones that have died off not so much. He showed me where the activity of the antibodies had slowed down so the treatment continues. I know I will not revive all my lost vision but at least I have gained some back. I still cannot see down so well but it is like areas are opening up. This after being on it for a year so it does take time sometimes or at least for me. He says I have retinitis pigmentosa simplex and probably the AIR started about 9 years ago when I was accidentally kicked in the eye and my autoimmune system started attacking the cells that were released into my retina as a result of the accident but he cannot be 100% sure of this. The RP simplex might have stayed dormant or very inactive but the autoimmune activity activated it most likely. Dr. Heckenlively feels there is hope in gene therapy for bringing back vision but not as much in stem cell. He studies the AIR condition but has said the funding is hard to come by. I know he has a couple of grants he feels hopeful about so hoping he has luck with them. Asked him of the regenerative medicine but he did not think the retina would be a good candidate for it but if anyone knows anything different I would like to know. Personally I recommend the drug treatment for AIR as it has helped me stablize/regain vision and I was losing my vison fast in the last year before starting the treatment. Like to know how others are doing with the treatment and if they stopped after 2 years are they still having success? Mike, would like to know what your contacts think of the AIR condition as you seem to have good contacts. Liz