Autoimmune Retinopathy AIR

Post here with questions about other autoimmune diseases or conditions.

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Mike Bartolatz
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Re: Autoimmune Retinopathy AIR

Post by Mike Bartolatz » Tue May 20, 2014 11:24 am

Thanks Ann!
you can post any links to reputable information at any time here. we are getting a lot of advertising right now on this site. have a note in to Kevin regarding this. vision correcting cornea surgery isn't something someone with inflammatory eye disease wants to get. severe dry eyes and a flare up of inflammation inside the eye is often a consequence of this that these doctors won't tell you about up front.

take care,
Mike
Mike Bartolatz
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djk
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Joined: Tue Oct 09, 2012 10:02 pm

Re: Autoimmune Retinopathy AIR

Post by djk » Thu May 29, 2014 7:14 pm

I have some good news to report!
After 1 year on IVIG plus Rituxan plus 6 months on Cytoxan, we did another Casey Eye Institute anti retinal antibody test. My anti retinal antibodies decreased from 6 to only 1!!! What is interesting is the one that showed up is not one of the 6 that showed up last time. I will have another Goldman Field in July. I hope that my eyes have stabilized.

I am legally blind, but can maintain a good standard of life if I can keep the vision that is left.

All the best,
-Deb

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

Re: Autoimmune Retinopathy AIR

Post by Mike Bartolatz » Fri May 30, 2014 5:01 pm

Deb,
that is GREAT news. sorry you are legally blind from this form of inflammation but if it does stay quiet you most likely will not have even more vision loss.

thanks for sharing good news BTW!

my best to you,
Mike
Mike Bartolatz
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GAL
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Re: Autoimmune Retinopathy AIR

Post by GAL » Fri May 30, 2014 6:47 pm

Deb,

I am fairly new on this site and have AIR as well. Your news that the original 6 bands are gone is fantastic and I am so happy for you. The combination of rituxan and cytoxan was discussed by Dr. Foster when I saw him for a consult as well as many other treatments that have been tried. I had read about another patient being treated successfully with the same combination in a 2010 Letter to the Editor Rheumatology publication. My doctors want to start with Cellcept which I gather is probably not enough to help.

Ann

djk
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Re: Autoimmune Retinopathy AIR

Post by djk » Sun Jun 01, 2014 9:51 am

Ann,

What type of Doctor is prescribing just Celcept?

I have Lupus and through support groups have learned that you have to take control of your healthcare.
Dr. Janet Davis (Uveitis specialist) at Bascom Palmer Eye Institute recommended IVIG and Rituxan. My Rheumatologist wanted to prescribe just Celcept. After researching on the web I decided that I wanted to do what Dr. Davis recommended. So I found a very good Hematologist/Oncologist who drew about 8 vials of blood in search of anything he could find to justify to the insurance company so that they would pay for the drugs. He was successful! My Rheumatologist got mad and dropped me as a patient. Had I stayed with him I would be blinder that I am now.

I was caught late in the disease. I was going to the same eye doctor every 6 months for 20 years because I had to, for the Lupus med -Plaquenil. For at least the last 7 years I kept telling him that there was something wrong, the darks were to dark and the lights to light. He kept ignoring my complaints and telling me it was dry eye and kept giving me eye drops for dry eye. Finally after a field test, he acknowledged that something was wrong. I was not a happy camper..... He is no longer my Doctor.

After that experience, I really took the bull by the horns and now take control of my healthcare. It is my body and I make the final decision. If some Doctors drop the the way side, so be it. From what I can tell, this disease needs to be addressed aggressively.

Take care,
-Deb

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

Re: Autoimmune Retinopathy AIR

Post by Mike Bartolatz » Sun Jun 01, 2014 12:09 pm

Deb, Good For YOU!!!!

your attitude is what drives me to be a part of the online support groups so that others will develop the courage and knowledge to successfully conquer their disease processes.

Thanks for sharing and hopefully your continued support at this site.
wishing you the very best,
Mike Bartolatz
Mike Bartolatz
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djk
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Joined: Tue Oct 09, 2012 10:02 pm

Re: Autoimmune Retinopathy AIR

Post by djk » Sun Jun 01, 2014 11:09 pm

Mike,

Thank you!
I was not if posting that would be appreciated.

Cheers,
-Deb

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

Re: Autoimmune Retinopathy AIR

Post by GAL » Mon Jun 02, 2014 6:43 am

Deb,

Thank you for information & encouragement. Recommended by rheumatologist & retina doctors in my area. Did switch a few doctors for this already but situation also involves insurance issues which hopefully took care of by changing plans, not activated yet. I am apparently early in the course so I think that makes many cautious. Thank you for posting and being honest and thanks to Mike for sticking with his online work.

Ann

Joe gargano
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Re: Autoimmune Retinopathy AIR

Post by Joe gargano » Wed Jun 11, 2014 8:00 pm

Hi everyone - My name is Joe and I'm new to this very informative site I was diagnosed with AIR in July 2011. I am 55 yrs old and live in Los Angeles. I have been seeing Dr Rao since AIR was confirmed. Needless to say it is a terrible disease, and the treatments are all hopeful to get it under control. My loss of peripheral vision started really bad in the left eye and over the last year is now pretty bad in the right eye. Central vision is still okay usually 20-25 in both eyes, which has Dr Rao very happy considering the inflammation and swelling in both eyes.

We started off with a high dose of Prednisone and Cell Cept. After about 3 months of this, the inflammation was not getting better. Dr Rao ask me if I wanted to try Retisert implants, which I believe at the time was done with only one other AIR patient at the time. I went ahead with the implants and they did a great job reducing the inflammation almost immediately The down side was I ended getting glaucoma and cataracts, which both needed surgery. After 6 surgeries the battle continues. I also had 4 infusions of the infliximab, that didn't seem to help. Dr Rao is now trying Ozurdex injections, which injects an implant into the eyes, and releases a steroid for the next 3-4 months. This is bringing down the swelling and inflammation, however in time it comes back again. I'm asking Dr Rao if we can take out the old Retisert implants and put new ones in, he is weighing this option. I would rather do this than having the Ozurdex injections every 3-4 months. It may raise my IOP again and glaucoma may come back I continue to take 10mg of Prednisone and 2000 mg of Cell Cept daily.

I wish everyone the best who is battling this or any eye disease, it is not easy to handle. I look forward to sharing more updates on my progress as well as reading the very inspirational info on this site.

Warm regards,

Joe

Mike Bartolatz
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Re: Autoimmune Retinopathy AIR

Post by Mike Bartolatz » Thu Jun 12, 2014 10:01 am

welcome to the group Joe.

please consider other drug options such as Rituxan as mentioned in other posts. IVIG is another to consider. with your status as a steroid responder, the implants may cause additional damage to your eyes. I'm not a doctor but a patient advocate hoping that all will learn of options that can often work to quiet the eyes down without using steroids if at all possible.

wishing you quiet eyes.
Mike
Mike Bartolatz
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Joe gargano
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Re: Autoimmune Retinopathy AIR

Post by Joe gargano » Thu Jun 12, 2014 1:02 pm

Hi Mike, Thank you for the advice, I would really like to try another alternative to the steroid. I will ask about both Rituxan and the IVIG drugs. When we did the Infliximab/Remicade infusions, my rhuematologist suggested this instead of the Rituxan. After the 4th infusion, my body really started to ache and there didn't seem to be any improvement in lowering the inflammation. There has to be something that can ease this inflammation besides steroids.

I continue to stay positive and hopeful. Being able to share this in the forum you have setup really helps. Your support and knowledge is very much appreciated.

Joe

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

Re: Autoimmune Retinopathy AIR

Post by Mike Bartolatz » Thu Jun 12, 2014 4:28 pm

have you discussed this with Narsing Rao MD? he should be able to suggest drug combinations for you and can monitor their effects.
I am partially blind from just using steroids as I didn't know about alternatives such as the DMARD drugs and they didn't have Remicade etc available here in the Seattle area. I found Dr Foster's online website and Parsplanitis.org and through his help I learned about much of this stuff. Dr Foster is the top Ocular Immunologist in the World BTW website http://www.uveitis.org where you can ask him to comment on treatment in a GENERAL Way. not being a patient he cannot speak specifically to appropriateness of any treatment. If a patient of his, he still cannot comment where anyone can read it as patient/doctor relationship would be breached. I have sent many patients to DR Rao over the past 14 years of my online support work and he seems to be pretty good. rarely does one drug alone treat AIR. Various combinations of different classes of medications are required.

wishing you the best,
mike Bartolatz
Mike Bartolatz
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Joe gargano
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Re: Autoimmune Retinopathy AIR

Post by Joe gargano » Thu Jun 12, 2014 8:33 pm

Hi Mike - I have heard Dr Rao is the best in the world when it comes to treating inflammatory eye diseases. However, he has told me he has only had a couple of patients with AIR. Things were going very well after the Retisert implants, my vision was very good, I was doing everything has normal. Things just started to get worst after the glaucoma and cataracts. We tried the Remicade and now he is leaning more towards the Ozurdex injections. He would rather hold off on the next set of Retisert implants. Now with your advice, I think I need to look at the other alternatives.

I will send Dr Foster a message and see if he can make a suggestion on what may help.

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

Re: Autoimmune Retinopathy AIR

Post by Mike Bartolatz » Fri Jun 13, 2014 1:08 pm

the best AIR specialist is Dr Heckenlively. contact info is somewhere in this very long thread. you might consider a trip to see him or DR Foster if you only get suggestions for continued steroid implant use. as others have mentioned in this thread on AIR, they had to go to very strong classes of drugs to stop the attacks. I can't tell you what is appropriate, just suggest someone for a second opinion and hopefully something will be offered.

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

Post by Joe gargano » Fri Jun 13, 2014 8:56 pm

Thanks again Mike, I will check with Dr Rao first, if he wants to proceed with the steroids, I will ask to get a second opinion from Dr Foster or Dr Heckenlively. I think Dr Rao has been trying to stay away from stronger class of drugs to take it easy on my body. I would rather get off the steroids and take my chances.

I appreciate all your help and advice, I'll post an update on the progress

Best regards,

Joe

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