Autoimmune Retinopathy AIR

[lynnofbretnwood]

Good afternoon, All!

Mike, thanks for the info you provide us with on this site. Here's an update on me. I had a consultation with Dr. Jampol in Chicago
and he was very straightforward about the disease. Of course we discussed IST and he brought up Plasmapheresis as his first choice of treatment. His opinion is that it will show results much quicker (a few weeks) and he has had success with it there in that area with AIR. I've read that it is normally used in concert with oral IST and the dosages required are much less when used in this fashion. I also presented him with the "cocktail" recommended by my rheumatologist (mycophenolate, methotrexate, and predinisone) and he said he agreed with it. I've also spoken with the NEI/NIH about the trial being conducted with Rituximab and it looks like I'm a candidate for that. I will make an appointment for an assessment and then make the decision after that. I am also in the process of attempting to make an appointment with Dr. Russell Read in B'ham. We lived there a couple of times and are very familiar with UAB and the medical community and think highly of it. Dr. Jampol said that there is enough retina function left to try and save. The more my husband and I deal with this the more we realize that it is almost virgin territory and there are many "theories" on how to treat it but none have been "certified" as absolute. Now, a question for you. Is it difficult to obtain an appointment with Dr. Foster? If Dr. Read doesn't work out that may be a shot we'd like to take. Out of curiosity, how did you come by the name of Dr. Read? Did Dr. Foster recommend him?

Thanks for all of you and your information. It is most helpful to us!! Lynn

[Mike Bartolatz]

When can you go to Dr Foster? just call his office and tell them that I've sent you to them and get an appointment that will work into your schedule. Dr Foster travels and lectures allot so make sure that He will be there for the appointment. Dr Hinkle is very good at MERSI as well. if the lady setting up appointments has a problem, ask for FRANCES FOSTER and then tell her I sent you. DR Foster is the Very best in the World and has had success treating AIR with various combination of drugs. when you set the appointment, ask which hotels give a 'patient rate' to see Dr Foster at MERSI.
you can take the subway from the airport right to DR foster's office in Cambridge. there are directions for this at his website along with the phone number to call for an appointment. I think you can also make an appointment VIA email but Frances is there if needed.
DR Foster and his wife Frances are personal friends of mine. I've volunteered with his support groups for ten years now.
I have no personal interest in this however as I am a patient advocate for all with OID everywhere in the World.

In Chicago, DR Tessler and Goldstein are pretty good too at the University of Chicago but, Dr Foster is the very best in my Lay opinion. you need a university type setting because of the complicated nature of AIR. you have to make sure that there is no cancer anywhere in your body persent.

Wish you a speedy resolution of the AIR too,
Mike Bartolatz
http://www.uveitis.org is Dr Foster's site then click on PATIENT Information for phone numbers etc.

[lizj56]

Hi Lynn, Really hope you have success with at least one of the doctors you see. I wrote Dr. Foster, per Mike's suggestion, and asked him about AIR and he asked me who I was seeing currently and when I told him Dr. Heckenlively of the University of Michigan he told me I was seeing a doctor on the cutting edge of AIR so just thought I would throw my 2 cents in. Interestingly I had seen Dr. Jampol too but because of insurance I had to go to a university hospital in Indiana or Michigan for my continued observation. When I asked Dr. Jampol who I should see he immediately gave me Dr. Heckenlively's name. Sounds like Dr. Jampol thinks you have hope so that is so wonderful. Hope we continue to hear about your progress and will be interested in your progress with the ritux trials if you choose to have them. I know Bobbi is having them currently and hope they work for both of you. Liz

[Mike Bartolatz]

Liz,
can you provide contact information for DR H, phone, email etc if you have it and post it in a separate note at the SPECIALIST forum of this site and title it AIR specialist in Michigan Please?

that way anyone can get the information. copy your comments from doctor foster and include them in the post please so that the expertise level of DR H is presented for all to see.

thanks,
mike

[lizj56]

Hi Mike,

Will do as requested under the specialist but wanted to post the conversation for all to see from Dr. Foster Liz

From: Stephen Foster [mailto:sfoster@mersi.com]
Sent: Tuesday, February 23, 2010 7:36 AM
To: Liz Johnson
Subject: RE:

You are in the absolute best of hands, with someone who is on the cutting edge in this matter.

Stephen Foster

________________________________________
From: Liz Johnson [mailto:liz.johnson@ancoproductsinc.us]
Sent: Mon 2/22/2010 5:05 PM
To: Stephen Foster
Subject: RE:
Hello, I live in Elkhart Indiana and I had the antibody tests yes, ERG, OCTs, blood tests and others. My doctor is Dr. Heckenlively of the Kellogg Eye Center. He has me on a treatment that seems to be successful as it has stabilized me so far and even had some improvement from my last visit in my peripheral vision area which is where I have problems seeing. He also has me on E, Beta Carotene, DHA, C and Lutein. Just wanted other input and if there is other treatments that are successful too. I hear of some having the injections but did not know if the results were good or not. I have the history of autoimmune diseases.. MS, rheumatoid arthritis and asthma in my family background. Was hoping you could let me know your thoughts on the treatments for AIR.

Thanks,
Liz Johnson

From: Stephen Foster [mailto:sfoster@mersi.com]
Sent: Monday, February 22, 2010 4:49 PM
To: Liz Johnson
Subject: RE:

Where do you live? Who are your doctors? Have you actually had an anti-retinal antibody test?

Stephen Foster

________________________________________
From: Liz Johnson [mailto:liz.johnson@ancoproductsinc.us]
Sent: Mon 2/22/2010 1:03 PM
To: fosters@uveitis.org
Subject:
Dear Dr. Foster,

I was told by a Mark Bartolatz that you would answer questions for eye conditions. I understand you are good at immunology and I happen to be currently on a treatment plan for what they call AIR autoimmune retinopathy along with retinitis simplelx. My vision was lost in the peripheral area so I am trying to stop the attacking of the antibodies with a treatment plan of cellcept, prednisone and cyclosporine deoral. I have been on it for a year now and will be on it at least another year to ensure that the attacking has stopped. I was wondering what your thoughts are in this area or if you know of anyone that works in this area. Not sure of the difference between the injection and the pills?

Thanks,
Liz Johnson

[Mike Bartolatz]

Liz,
thanks for the information and for posting it in the various forums. as you can see, Dr Foster will reach out to anyone who requires information and his compassion is evident in his notes to you.

If you go the plasmapherisis route, keep us posted on that as well as I've read about it but haven't had anyone post with their experience.

your family medical history is remarkable and I wonder if a couple of genes might be present in you as well as in them.
back in about 2007 the IL23RN and ERAP1 genes were discovered and were linked to ankylosing spondylitis (arthritis of the spine), Crohn's disease (gi tract inflammation which can also have spondylitis present), autoimmune thyroid disease, Breast Cancer and possibly MS and systemic Lupus Erythematosus. they may be linked to other autoimmune disease processes as well. If you have the IL23RN gene, then the new drug Stelara blocks the gene and the body stops producing the IL17 cytokine seen in many inflammatory diseases. I know that Dr Nussenblatt at NEI is researching use of cytokines and drugs to stop them from causing stuff to occur but because so much of this is relatively new, there isn't much published on the topic.

Wish you the very best,
Mike Bartolatz

[lizj56]

Hi Bobi, Hoping your ritux trial is coming along nicely and was wondering actually how it is coming along? Hope all is well.. LIz

[BHM]

Hi Liz,
I wish I coud tell you it made a difference but I'm afraid I can't. My vision is worsening it seems. It doesn't seem to be spreading but it's deepening in the already damaged areas. My 3 month appointment is next week and I will have the ERG,HVF, Goldman VF and the ever dreaded picture with autofluorecense. So I will have a better handle it all then. The Rituximab, itself, caused me no trouble at all. My issues went on too long before I was diagnosed and a lot of damage occurred. I had a flat ERG to begin with. I'm mentioning all this because I don't want someone else to be discouraged if a physician suggests Rituximab. My case was so far gone.

I'm just looking at my world through white haze. I still have some central vision and some lower vision left thank goodness. I got a pair of Corning 527 glasses and they are very helpful especially indoors. Tomorrow I'm heading into NYC with my husband to see just how helpful they are in the sun in a city. I'm a masochist. I need a backpack just for all my glasses.

How are you doing? If anyone else is checking in, let us know how you're doing.

I'll report back at the end of next week when I return home from the NIH. I'll also find out if they learned anything new at ARVO.All my doctors went. I did hear that stem cell therapy was very much talked about and should be in clinical use in about 2 years.

Bobi

[Mike Bartolatz]

Bobi,
thanks for the update and your support of others here at the site. I wouldn't wish your condition on anyone but it helps that you are positive and willing to share your experience with all of us.

Wishing you the very best,
Mike Bartolatz

[lizj56]

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

[BHM]

My Corning glasses cost $410.00 including frames. We headed into NYC for lunch yesterday and the glasses were very helpful. I am glad I got them. They have lighter versions of the same type lens but the lighter one was too light and the darker one was too dark so the 527 was the right one for me.

That would be great if you would ask Dr. Heckenlively about the Rituxan study because he is a collaborator, I think. If he doesn't feel confident about it then I might try something else. He is definitely a top doc when it comes to AIR. I'll wait until I hear from you.You did give me some hope when you said you had a flat ERG too and also that you thought you were getting worse when, in reality, you had stabilized.

I'll be eager to hear any information you might be able to pass along. I'm also hopeful that, in the future, there will be something that can recover lost sight. Keep us posted.

Bobi

[lynnofbretnwood]

Good morning, All! It's been a while since I last posted and a lot has gone on. I was examined by Dr. Foster and his staff at MERSI, the NIH/NEI for evaluation to see if I am a candidate for the Rituximab trial, and Dr. Read of UAB
in Birmingham. Basically the results has been they all believe I have AIR which isn't surprising. Dr. Sen at the NEI recommended trying the oral IST before jumping into the use of Rituximab. The reasoning is valid. If any serious side effects
occur from the oral IST the medication can be stopped right then. In the case of the Retuximab infusion once it's in the body
it will be there for 6 months and there's no stopping of that. Rituximab was referred to as the "big gun". I can tell you that since a few months ago when I finally found a rheumatologist that said he wanted to help in any way I've found doctors that truly want to help me. Also I've found how little is known about this condition and how many schools of thought there are. Dr. Jampol partnered an editorial about IST for AIR and it raises some valid questions. It was recommended that I have a PET scan before starting IST. Even thoughI've had ALL cancer screening including a CAT scan of the torso I was told that the PET scans in a different way and can be used in conjunction with the CAT to be much more assured that nothing exists in my body that could have triggered the AIR. By the way, no glasses I've found have addressed the foggy, hazy vision that worsens with more exposure to light. I'm basically blind during the day if I'm out, in malls, even at Church. Needless to say I don't drive or do any of those "normal" things anymore. The one thing I've found over the last two years is that one doesn't rely on the medical profession (most of it anyway) to get one to the right place to resolve something like this. If you're going to doctors with a serious vision problem and they tell you "let's give it a little time and when you come back we'll see how you are" they either don't have a clue or they don't want to venture outside their little realm! Sometimes one has to search to find doctors like I have now that want to really help me. This isn't ranting it's just fact. Good luck to you all!! Again, thanks, Mike!

[Mike Bartolatz]

Liz,
It really saddens me that you have to be a guinea pig for treatment but on the other hand I am encouraged that you have the BEST doctors in the World involved in getting your eyes quieted down.
your comments are also appreciated as knowing that one of our members has found help and solace by joining our forums. that's what a support group is about and If I can hook up people for support with knowledge then all of my energies are well spent.

Truely wishing you the very best,
Mike Bartolatz

[BHM]

Lynne, thanks for the update. Dr. Sen is my doctor and I really like her. The NIH/NEI is a great place. It was good that you saw Dr. Foster too, through Mike. I know that haze/whiteout so well. Thankfully, I can open my eyes in sunlight although it is annoying. I'd suggest the Corning 527 or 550 lenses but it sounds like you've already gone that route. I wear a golfer's hat to shield me from the light. Good luck with whatever treatment you decide. Keep us posted. We're all interested and care. Thanks to Mike for hosting this group.

Bobi

[Mike Bartolatz]

Bobi,
I've had difficulty with sunlight now for over 49 years now because of uveitis. although they are ugly, fit over polarized sunglasses make my life allot easier when outside. the polarized lenses are the key. I too have to wear a baseball cap some days as I can't look straight ahead and be able to see in sunlight. I live in a part of the world that is often overcast so I can often go outside without a hat but the sunglasses are still a 'must'. my glasses are photochromatic too. I have to have sunglasses on when outside because I have intra ocular lenses implanted and they don't filter UV light like a normal lenses does. I don't want to fry my macula with UV light.
I also use brown tinted sunglasses outside on overcast days and while on the computer to cut glare.
outside at night can be a problem too with headlights of oncoming cars blinding me. I use yellow tinted driving glasses to cope with this but my wife does the driving as I have other 'issues' with night blindness and I have allot of debris floating around in my vitreous which can 'appear' as an object crossing my path, kinda like a dog running out in front of a car like illusion.

wish you the very best,
Mike