Autoimmune Retinopathy AIR

Post here with questions about other autoimmune diseases or conditions.

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BHM
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Re: Autoimmune Retinopathy AIR

Post by BHM »

I do have 2 different fitovers that are Polarized. You gave me an idea. Maybe I'll throw them on over my Corning 527s. See if it is any more helpful. Today was the day of all days......sunshine everywhere. My husband got up and said what a spectacular day it is. Umm, no it isn't. Dark and gray is spectacular. He doesn't get it <g>.

Bobi
Mike Bartolatz
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Re: Autoimmune Retinopathy AIR

Post by Mike Bartolatz »

the fit overs should help allot in conjunction with your prescription glasses, life won't be perfect but much better.
keep that visor on too.
it is an overcast day here in the Pacific Northwest of the USA where I live today. aversion to light is tolerable.

God Bless,
mike
Mike Bartolatz
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BHM
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Re: Autoimmune Retinopathy AIR

Post by BHM »

lizj56 wrote:Hi Bobi, yes thanks for the update and don't become too discouraged.. too much success in on the fighting for blindness letter I received a month ago. I believe restoration of lost vision will be on the horizon. I will tell you I have a flat ERG also and at times before my visits I was sure I had become worse but had acatually stabalized and had some recovery last time. The stabalization is the most important thing to me right now but going into the future would love all of us to regain the lost vision. I will ask Dr. Heckenlively about the clinical trial you are in and what he forsees as the most promising research right now. My visit with him is June 17th, 2010 so will also give my feedback as well. Hope the best for your visit this week and will look for your results. Have to look at what the Corning 527 glasses? Are they expensive? Will be interested in the Arvo meeting updates too.. thanks so much for reporting and will pulling for you.. Liz
Well, Liz, looks like I was wrong and that my vision is stable. I just came home from my appointment at the NIH and that's what they said. So, like you, I only thought my vision was worsening. I will be eligible to have another Rituximab infusion in Sept if things stay the same. So, I'm happy about this. I had a low vision rehab appointment today at the NIH too and she was teaching me to see out of the part of vision I have left among other things....Many helpful hints.

AFA ARVO is concerned, there wasn't a lot to report about AIR.

Bobi
lizj56
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Re: Autoimmune Retinopathy AIR

Post by lizj56 »

Hey Bobi, Was really hoping you would report back and to hear such great news is really wonderful. Really happy for you. After a year I finally did more than just stabalize and actually recovered a little back of my vision.. not a huge amount yet, but definitely going in the right direction so think it sounds very positive for you.. I asked Dr. Heckenlively last February if I would be able to regain more of my sight and he said it was very possible so at least we have hope. You made my day with that news.. Never thought of seeing a low vision specialist but I'm sure the Kellogg Eye Center has one there when I go in June.. could certainly use any hints they want to give me.. it is amazing how we can adapt to our circumstances given the right tools.. I know my son, who is at college, told me he saw students who were blind really navigating the campus with their white canes as if they were not handicapped at all. Of course he has an appreciation for this kind of thing since he has seen me try to get around.. Anyway, great news and will report my June 17th appt results.. Think we are on the right track.. Liz
lizj56
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Re: Autoimmune Retinopathy AIR

Post by lizj56 »

Interesting research for not just retinitis pigmentosa but other retinal diseases... Good read and brings promise to restoring vision..

For Immediate Release
Media Contact: Diane Clay
Email: diane-clay@ouhsc.edu
Phone: (405) 271-2323

OU Researchers Find Way to Prevent Blindness in Research Model for Retinitis Pigmentosa

Researchers working toward cure for pigmentosa; other retinal diseases

June 9, 2010 – Researchers at the University of Oklahoma Health Sciences Center have found a way to use a radical new type of gene therapy to prevent blindness caused by retinitis pigmentosa, giving hope to the estimated 100,000 Americans who suffer from this debilitating disease. The study appears in the Journal of the Federation of American Societies for Experimental Biology (FASEB).

The research, led by Muna Naash, Ph.D., at the University of Oklahoma Health Sciences Center, with collaborators in Cleveland and Buffalo, discovered a way to deliver known gene therapies directly to the light-sensitive cells affected by this disease.

The discovery already is being used to develop new treatments for another disease – macular degeneration, the leading cause of blindness in the United States.

"We hope the results of our study will be instrumental in generating a cure for the debilitating blindness associated with retinitis pigmentosa and other inherited and acquired retinal diseases," Naash said. "We want to give Oklahomans and others suffering from these diseases renewed independence and quality of life."

Utilizing nanoparticle technology, scientists created a microscopic capsule capable of carrying genetic therapies to their destination inside cells of the retina. The tiny delivery vehicle is being tested with a variety of gene therapies in animal models with the potential of treating several diseases from bladder cancer to diabetes. The capsules have proven very effective, carrying therapies to the designated location in the eye within 15 minutes of delivery and spreading the genetic repair message quickly to nearby cells.

"I am thrilled about it. That's why we have been working so hard to get this as quickly as possible through the necessary experiments, so we can publish our findings and take it out to the patients," Naash said.

Retinitis pigmentosa is an eye disease in which there is damage to the retina. The damage gets worse over time as side (peripheral) vision is gradually lost and may eventually lead to blindness. The disorder commonly runs in families and can be caused by a number of genetic defects with signs and symptoms often first appearing in childhood. Severe vision problems do not usually develop until early adulthood.

The research on retinitis pigmentosa at the OU Health Sciences Center is supported by a grant from the National Eye Institute and the Foundation Fighting Blindness.

For more information on retinitis pigmentosa, go online to www.nlm.nih.gov/medlineplus/ency/article/001029.htm.
Mike Bartolatz
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Re: Autoimmune Retinopathy AIR

Post by Mike Bartolatz »

Liz,
thanks for the article. I hope it works in further testing on humans. this could revolutionize genetic treatment of disease.

mike
Mike Bartolatz
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BHM
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Re: Autoimmune Retinopathy AIR

Post by BHM »

I'll echo Mike's thanks for the article. Everytime I read something like this, it really gives me hope. Good luck with your upcoming doctor's appointment, Liz.

Bobi
lizj56
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Re: Autoimmune Retinopathy AIR

Post by lizj56 »

Hi everyone.. Well I went to my appointment yesterday and I did not have any new improvement but still stabalized from what I can tell. Dr. Heckenlively told me I tend to fluctuate in my Goldmann Visual Field testing so thinking maybe depending who gives me the test the results might reflect a little bit.. not sure why but clearly the stabalization is in place. I don't know about you but when they give me the Goldmann visual test I tend to naturally see sparkles anyway so I'm thinking sometimes I see a light but not sure if the light flash is my condition or the technician.. when they go into the bigger lights it is easier to differentiate. Maybe if they would make their dots fluorescent orange, green or some color to know it is the operator and not just my condition.. think the results would be more accurate.. Had an OCT done and it proved to be good and no glaucoma but truth is I'm not really improving to any great degree. Dr. Heckenlively is going to try and see if he can help me get into the clinical trials you are in Bobi but do not know yet if I can. The cost of having it done is really high so hopefully I will be accepted into the clinical trials as the cost of it is prohibitive for me. Will let you know if it happens. He said I am enduring the medications well so at this time will continue on them. I believe my antibodies are still attacking pretty substantially so not sure why that is happening since I'm on the autoimmune drugs but then I did not get tested last February and they are going off the visit before that. He talked of some injection made by Allergan but it is one they would have to put on their formulary and that is a process that takes time. FDA approved for rheumatology and lupus treatment currently so again I would have to pay for it but not so cost prohibitive as the rituximab injections. It is new to treating the condition so would be extremely new for treating AIR so will talk with him about it if the time comes when it is approved into their formulary. Good news is I'm still stabalized, and have a chance to maybe be part of the rituximab clinical trials. Hope all is well with the rest of you and my next visit will be sometime in October. Best to all, Liz
BHM
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Re: Autoimmune Retinopathy AIR

Post by BHM »

Liz, I'm glad to hear things are, at least, looking status quo for you. If you go to the NIH for Rituximab it's free although there would be travel expenses that you would have. The NIH does provide some travel reimbursement although definitely not enough to cover the total expenses.I'm not sure how they compensate airfare since I drive (well, my husband drives). I hope you'll be able to get the drug in a trial or on a compassionate basis in MI. Is there a current clinical trial using Rituximab with HeckenlivelyI? I don't get the sparkle type thing you mention with the GVF. The bigger lights are so much easier to see, like you say. I've been getting more haze and it's driving me crazy so I'll be going back to the NIH on July 1 to have a Multi-focal ERG and another Humphrey done so we shall see. Thankfully, I still have some central vision left. I'll keep you posted after my visit. So glad you posted the results of your visit.

Bobi
lizj56
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Re: Autoimmune Retinopathy AIR

Post by lizj56 »

Thanks for the support.. nice thing we have going here.... I went over some of the things you talked of to me Mike and so it was nice to actually be able to discuss intelligently with the doctor. Anyway, just wanted to let you all know how much I appreciate all of you... Liz
Mike Bartolatz
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Re: Autoimmune Retinopathy AIR

Post by Mike Bartolatz »

many drugs can be used to treat your conditions even though they are not on an insurance companies drug list'. you have a very rare disease and as such the FDA has established an 'orphan disease' list and and 'orphan drug' list. many drugs can be used because of this 'off label'. your doctor can then present supportive evidence to the insurance company to get the drug paid for. if you are unable to afford the drug, you can apply of reduction of the cost too should it not be approved by the insurance company. DR Foster does this frequently for his patients For your information.

you mentioned increased 'haze'. do you have additional inflammation going on causing protein in your vitreous to occur?
any chance that macular edema is present? ( fluorescein angiograpy or optical coherence tomography would image this)

I'm glad we have been able to help you make connections here at iritis.org. your shared support is wonderful and I'll do whatever I can to make sure this is available to you.

wishing you the very best,
Mike Bartolatz
Mike Bartolatz
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BHM
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Re: Autoimmune Retinopathy AIR

Post by BHM »

Mike, this is a wonderful site you have created. It's so difficult to find others who have extremely rare diseases. I always appreciate others posts. It's how I learn. I wish others who have posted before would post again so we can hear how they're doing.

You asked about haze and I can tell you , at least in my situation, they have no idea what is causing it. I've had Fluoroscein angiography and OCTs every few months. My OCT is very abnormal. The FA shows attenuated vessels which they say is common with AIR. On fundus photos everything appears normal.

How is everything going with you Mike? Any recent appointments?

Bobi
Mike Bartolatz
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Re: Autoimmune Retinopathy AIR

Post by Mike Bartolatz »

Bobi,
I have no active uveitis thank God but I have had recent bouts of 'white out' that at first were suspected as caused by vascular disease but on ultrasound of my carotid arteries this was ruled out. the day before my ultrasound I was mowing my lawn and experienced this phenomenon once again with additional loss of vision in areas of my eyes. this lasted for about six hours before I could see again. this transcient loss of vision from overheating is called uhthoff's sign or symptom and is related to demylination of the optic nerves. I have a history of Pars planitis which is inflammation of an exudative nature just behind the iris. Although this has been quiet now for several years it is possible for other disease to become pronounced over time so I will be seeing a Neuro opthalmologist in the coming months to evaluate my condition. the most common cause of this related to my uveitis is Multiple Sclerosis. luckily MS related to pars planitis is mild in nature.
I have been more depressed because of this as I had hoped that I would never have this experience again.

Life throws us curve balls from time to time so we have to take things in stride and move forward.

would an injection of Avastin, a Vascular Endothelial Growth Factor Drug help with the vascularization and with the abnormal thickness of the retina seen on OCT? is there protein in your vitreous that could explain the haze? I recall having 'flare' which is protein in the Vitreous seen on Slit lamp exam that caused this phenomenon with me.

I am happy that you have found support here at iritis.org that has helped you through your very scary disease. all of us need support from those who have experience with our conditions and that is why I've worked to keep this site going.

Take care,
mike
Mike Bartolatz
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BHM
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Re: Autoimmune Retinopathy AIR

Post by BHM »

Mike, I've heard of Uhthoff's. My son has had that loss of vision issue too. They thought he had MS and even the MRI looked suspect but the neurologist said it is more likely because he gets migraines and it sometimes shows up as gray on an MRI. I hope you get good news at the neuro-ophthalmologist. Vision loss or even diminished vision is very scary and can be most depressing as you say. And, no one wants to think of having MS either. I read somewhere that people who have vision loss seek more opinions/consultations than even people who have cancer. That's how unsettling it is.

BTW, my OCT showed that I have VERY thin retinas, not thick. Thank you for the suggestions. All ideas are most welcome to me.

Bobi
Mike Bartolatz
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Re: Autoimmune Retinopathy AIR

Post by Mike Bartolatz »

you should get your son tested for the neuromyelitis optica IgG antibody which can cause retrobulbar optic nerve demylination most often seen in what was formerly called Devic's disease. does he experience muscle pain or occasional jerking arms and legs, body etc? twitching of muscles? problems with balance? neuromyelitis optica is a combination of optic neuritis and transeverse myelitis, inflammation along the spinal cord. rarely it can have lesions on the brain. the optic nerve can appear normal on slit lamp exam with this. it will be one of the things I will be discussing with the Neuro opthalmologist when my appointment is made in the coming weeks. this antibody can also be found in Systemic lupus Erythematosus and sjogren's syndrome patients. I don't know if it can be found in Sarcoidosis patients but optic neuritis is also found in it. Lyme disease can mimic MS and transverse myelitis. so can the epstein barr virus and other herpes viruses if I recall correctly. retrobulbar optic neuritis is diagnosed with a contrast (gadolinium sp) MRI with a susbstance to enhance the fat cells along the nerve, if not present in an area it shows demylination of the optic nerve. retrobulbar optic neuritis is most often associated with Multiple sclerosis if I recall correctly. a neuro opthalmologist can do additional nerve funtion tests on the eye too. optic neuritis can also cause the haze you describe. often you will see flashes of light in your peripheral vision when your eyes are closed or in a dark area usually on movement of your eyes from side to side.

wishing you and your son the very best,
Mike
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