Autoimmune Retinopathy AIR

Post here with questions about other autoimmune diseases or conditions.

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GAL
Posts: 28
Joined: Sat Mar 01, 2014 9:44 pm

Re: Autoimmune Retinopathy AIR

Post by GAL » Sat Jun 14, 2014 7:38 pm

Joe,
Speaking from my small experience - had steriod injection backside of one eye and now have cloud of floaters in central area of that eye. I personally plan to avoid steroids.

Best wishes for finding combo that helps you, but others on this board and the experts Mike is pointing to you are worth a look.
Ann

Joe gargano
Posts: 6
Joined: Sun Sep 08, 2013 9:12 pm

Re: Autoimmune Retinopathy AIR

Post by Joe gargano » Thu Jun 19, 2014 1:48 pm

Hi Ann - Thank you for sharing your experience, I'm learning a ton of information which I plan to share with my doctor on my next visit. It seems like steroids and injections are my doctor's preference, I have to push for the other alternatives.

I hope your vision is doing better and best wishes,

Joe

Pegofmar1
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Joined: Fri Sep 27, 2013 7:12 am

Re: Autoimmune Retinopathy AIR

Post by Pegofmar1 » Sat Sep 13, 2014 8:55 am

Just wanted to give you an update on Tim. We continue to see Dr. Mark Dacey about every two months and he says Tim's eyes are remaining stable (meaning one eye is much better than the other). Tim is taking methetrexate (started that July 2013). He uses various drops for dry eyes and recently started using Restasis which takes a few months to become effective and might help Tim's light sensitivity and blurriness. We are grateful for the stabilization. Best wishes to all who post here.

Mike Bartolatz
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Joined: Fri Feb 06, 2004 9:58 pm

Re: Autoimmune Retinopathy AIR

Post by Mike Bartolatz » Mon Sep 22, 2014 11:10 am

glad his eyes remain stable on just methotrexate. wish you the very best,
Mike
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Matilda
Posts: 10
Joined: Wed Nov 12, 2014 10:22 pm

Re: Autoimmune Retinopathy AIR

Post by Matilda » Wed Nov 12, 2014 11:36 pm

Hi I have never been to a site like this but in the past two years I am doing many things I have never done before. I am female, 52 years old and live in Australia. Thank you for this discussion it has been helpful to read other people's experiences.
Roughly two years ago I noticed a little area of fog in my left eye when I went outside into the bright light. I recently received the results of blood tests sent to the Casey Eye Institute in Oregon. I have an auto antibody against 46-kDa Enolase which is positive for both my retina and optic nerve.
In the past month I have had my driving priveleges removed as my peripheral vision has reduced to 50 degrees in both eyes. In Western Australia the minimum legal requirement is 110 degrees. That came as a shock along with being told that I should start to consider a guide dog while I still had good useable vision.
My night vision is poor and when in unfamiliar surrounding at night I need to be guided. Daytime sounds like most of what has previously been described with the white out and I am starting to use my sunglasses inside on very bright days. I find overcast days are the worst as there is no escaping the glare. My left eye is far more affected at this time although there is cone loss in both eyes. I can't use escalators and need to take care going down steps as I have difficulty judging where the ground is. Does anyone else have this trouble or could someone explain why this happens? Different textures and colours on the ground seem to confuse my brain. In Australian on pedestrian crossings the lines are marked in white paint. To me these appear to be humps and the first time it happened I nearly tripped over the white line. Sounds pretty silly but at the time it gave me a fright! I much prefer the colour yellow for some reason it stays flat and does not reflect like white.
I am able to work and have not told my employer of my sight issues. There may well be anti descrimination laws but for the moment I would rather not take the risk. I have turned the contrast and brightness down on my computer and generally manage okay. I am not sure how much longer I am going to be able to keep working as so many things are starting to become difficult.
I have had no treatment to date. There is a huge question mark as to whether this is a Cancer Associated Retinopathy. I am pleased to say that despite extensive tests no cancer has been found. My specialist is now considering Cellcept. I am relieved that finally some treatment may be forthcoming and really frightened at the same time. I would appreciate any comments on Cellcept.
Thank you so much for taking the time to read this. May God bless you on your journey.

GAL
Posts: 28
Joined: Sat Mar 01, 2014 9:44 pm

Re: Autoimmune Retinopathy AIR

Post by GAL » Fri Nov 14, 2014 9:27 am

Matilda, welcome to the group, though sorry that we have to meet you in this way. I am in my late 50s and live in the United States and also have had Autoimmune Retinopathy (AIR) for about 2 years. My retinal antibody tests were done at Casey Eye and showed 4 autoantibodies. 8 months later both retina and optic nerve tests were done and showed positive for both. No cancer detected so far for me either so potentially could be npAIR (non cancer associated autoimmune retinopathy), but either way I was told to be sure to do my cancer checks religiously for the rest of my life.

My personal opinion is that if you have AIR, then it would be best to try and halt the progressive vision loss with some form of treatment ASAP. I had taken Cellcept for several months, but my current doctor feels that Cellcept by itself does not help with AIR so now on Cyclophosphamide and Rituxan is in pre-authorization process. It could be all in my mind, but it seems my visual acuity is better and am hopeful that this combo will work as my AIR seems to be affecting my central vision the most. Not treating AIR is not a good idea and I would ask the doctor if a more aggressive form of treatment than Cellcept would be better given your more aggressive sounding disease course, but that is just what I would do and I have a slower progression.

I was a bit worried too regarding the drugs, but for me the immunosuppressant drugs are not bad - though everyone reacts differently. I make sure to follow drug/doctor directions, religiously see doctor and his monitoring schedule and do everything I can to aid the process – rest, good diet, fluids, wash hands alot (I used to stay away from Purell and now use it a lot!), stay away from sick people, protect skin from sun, and exercise. Cellcept at 2000mg a day didn’t give me any side effects, but at higher dosages it did – nothing bad, but hard to live a normal lifestyle running to the bathroom. Cyclophosphamide has not caused any noticeable side effects for me at all so far, knock on wood! Ask your doctor and PCP (primary care doctor) if vaccinations are good idea before immunosuppressant drugs – flu (non live), already had pneumonia vac, etc.

Regarding your visual symptoms, so sorry you are having so much trouble. Hang in there. I imagine that what you are experiencing has to do with what part of your eyes are affected cones vs. rods. I received my diagnosis fairly early and am on course for what I think is best treatment option to try to stabilize my progressive loss. Hope this is not too long, It is not a fun disease and best wishes to you and everyone else.

Ann

Mike Bartolatz
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Re: Autoimmune Retinopathy AIR

Post by Mike Bartolatz » Fri Nov 14, 2014 12:19 pm

Matilda, Welcome to the group!

Ann has given you excellent advice regarding aggressive treatment for AIR. I have to defer to her regarding treatment as I am not as knowledgeable as she is on this topic. Hopefully your doctor can get your AIR controlled for you and that you don't lose more vision to this terrible condition.

wishing you the very best,
Mike Bartolatz
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GAL
Posts: 28
Joined: Sat Mar 01, 2014 9:44 pm

Re: Autoimmune Retinopathy AIR

Post by GAL » Fri Nov 14, 2014 3:00 pm

Matilda,

If your doctor is willing to consider treatments done by others, then go to uveitis.org Ask Dr. Foster and read the discussion from JoeG..where he asked about AIR back in June as you will see what information he gave to him. You can also ask your own general questions there too if you wish so that it is more tailored to your given situation. Dr. Foster has decades of experience with ocular immunology.

Best wishes.
Ann

Mike Bartolatz
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Re: Autoimmune Retinopathy AIR

Post by Mike Bartolatz » Fri Nov 14, 2014 6:29 pm

Thanks again Ann for your input on this.

my best to you my friend,
Mike
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Matilda
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Joined: Wed Nov 12, 2014 10:22 pm

Re: Autoimmune Retinopathy AIR

Post by Matilda » Sun Nov 16, 2014 11:50 pm

Thank you Ann and Mike for taking the time to reply, your input and your warm welcome.
Yep I also wish we were meeting in another way Ann.
I would not wish this disease on anyone but it is so good to 'know' someone else on the journey and you sound so switched on. My doctors consistently tell me that they expect my progression to be slow. One Professor was blunt enough to say that the tests they are doing are so they can plot deterioration over the next decade. I told him that was all very well but when I came back in 12 months and say I am blind all of his plotting of deterioration will do me no good.
And they cannot seem to agree with each other. I know this disease is rare but if the Professors cannot agree and won't talk to each other I don't hold out much hope. I have even been told I would rather be blind than dead. ????? Really not helpful from a person supposed to be a Professor.
The only reason that the present Professor is even willing to consider Cellcept is because I found a clinical trial being run in Sydney into Stem Cell Transplant for Severe Auto Immune Disease. She said that this was far too risky but that if I was looking at this kind of thing then I was prepared to risk some form of treatment.
Anyway, sorry to vent. After reading your posts I went and checked out uveitis.org. Unfortunately the network I am presently using I am unable to go to Ask Dr Foster. So I am thinking of sending him an email and asking him for an opinion. Perhaps he may even provide some sort of direction to the Professors over here. I would of course be more than happy to pay him if he would be willing to at least initially accept test results etc. and maybe give me an indication of whether he thought the progress could be halted. Much of what I read on the internet, research articles and the like all say 'prognosis is poor' and yet on the uveitis website Dr Foster says that auto immune is treatable.
My husband and I do not have deep pockets but I am now beginning to think that I am at the point of no return. I just don't feel I have a lot of time to wait around and maybe, I can't believe I am saying this, a trip to Boston may be the sensible thing to do in the long run.
I have an appointment on Monday with the oncologist for results of routine scans and will seek his opinion. Tuesday I have a mobility assessment and will see if I can pry an opinion from there as well.
Thank you so much for listening - blessings to you all on this crazy journey called Life.

Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Re: Autoimmune Retinopathy AIR

Post by Mike Bartolatz » Mon Nov 17, 2014 12:46 pm

There is one specialist in Australia who trained in the USA under DR Foster:
Australia

Lye-Pheng Fong, MD
262 Mountain Way
Nantirna, VIC 3152
Tel: 61-3-259032 Fax: 61-3-9210-7301


I have contacted Dr Foster and have asked if this doctor would be willing to work with him once you go to Boston, USA for a consultation.
the only way Dr Foster could comment is if he is your patient and then only privately, not in a forum like this.

I am not in Boston BTW, I live near Seattle, WA. USA. I just volunteer online for the Foundation.

will get back to you when I hear from DR Foster,

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

Post by Mike Bartolatz » Mon Nov 17, 2014 1:39 pm

DR Foster indicated that DR Mcklusky (sp) would be the specialist to work with him in the event that you decide to come to the USA.

mike
Mike Bartolatz
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Mike Bartolatz
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Re: Autoimmune Retinopathy AIR

Post by Mike Bartolatz » Mon Nov 17, 2014 1:40 pm

Peter McCluskey, M.D.
St. Vincent’s Clinic Tel: 9332-6062
Suite 1004 438 Victoria Street FAX: 9332-6063
Darlinghurst, NSW 2010
E-mail: iritis@ozemail.com.au
Mike Bartolatz
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Joe gargano
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Re: Autoimmune Retinopathy AIR

Post by Joe gargano » Mon Nov 17, 2014 3:59 pm

Hi Mike, Ann, Matilda and all the folks using this wonderful forum for information and help. Since my last post it's been back and forth to the doctors, still trying to get this AIR stable. I had spoken with Dr Rao in August about seeing Dr Heckenlively , he said that would be very wise. I called Dr Heckenlively office and found he is a on a part time sabbatical, getting a appointment would have meant waiting until December. My inflammation was getting worst so we went ahead with Ozurdex injections in both eyes. We also started using Tacrolimus ( Prograf ) at the suggestion of my rhuematologist. He said this acts the same way as Cyclosporine, but doesn't have so much side effects, especially raising the BP. I was okay on the small dose, 1mg twice daily, when we bumped it up to 2mg daily, I couldn't handle it. Many trips to the bathroom and lots of body aches. We decided to go with the Rituxan, and after waiting a bit to get it approved by Aetnea, I had 2 infusions done in October and early November, 2 weeks apart. Dr Rao and my rhuematologist were both in disfavor of using Cytoxan, they said the side effects are too severe. They both felt the Retisert implant was the better way to go, so I had another Retisert implant put in my right eye on November 6th. Surgery was done by Dr. Lam and she said everything went fine. On November 12th I saw Dr Lam again and she said inflammation in both eyes was down a little bit. I hope I won't need another Retisert in the left eye as the inflammation right now isn't too bad. I'm taking 2000 mg of Cellcept daily, and down to 5 mg of Prednisone daily. I'll wait and see if this combination works better, and also plan to see Dr Heckenlively sometime next year. All we can do is hope and pray that our conditions will improve or get stable. This forum has helped me to better understand what alternatives and resources are available, as well as interfacing with people just like me. Hopefully new medicines and treatment will get all eye diseases under control.

Best wishes to all,

Joe

Mike Bartolatz
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Re: Autoimmune Retinopathy AIR

Post by Mike Bartolatz » Tue Nov 18, 2014 11:32 am

Joe,
Thanks for the update,
sorry you continue to have inflammation and I pray that this will quiet down for you soon. let us know how things go for you and I wish you a wonderful Thanksgiving Sir,

my best,
Mike
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