Iritis.org

Hi, My name is Liz and I have been diagnosed with RP Simplex but with autoimmune retinopathy which I have for the last month been taking 20 mgs of prednisone, cyclosporine every 12 hours and cellcept every 12 hours. Apparently they feel my retina is being attacked by my own immune system due to possibly an injury, a predisposition to autoimmune conditions in the family history such as asthma, RA, and MS, plus my ERG is extinquishable and my peripheral vision has been deteriorating since the early 2000s especially 5 to 6 years ago... thought it was ocular migraines as I am prone to migraines but neurologist and retina specialist said no and was RP. Apparently it is RP Simplex because I have no family history of blindness or such condition plus I have had western blot blood testing and thousand other tests at a research hospital that has determined AIR which is autoimmune retinopathy.. anyway just hoping someone has heard of this and results of anyone on the therapy I am on... will be going back to be checked in May which will have me on this routine for 4 months and will hopefully have regained some of my peripheral.. cental is 20/15 with contacts, no color detection problems but attenuated blood vessels in the retina.. if anyone has just taken the drugs I am on tell me your experiences.. thanks in advance, Liz

what do you mean by 'RP simplex' as this is a new term to me ( I'm not a doctor) do you mean retinitis pigmentosa?
do you mean Relapsing Polychondritis?
the drugs you mention are frequently employed by Ocular Immunologists to stop inflammation in the retina and other parts of the eye. you could email DR Foster in Cambridge, MA USA at the ocular immunology and uveitis foundation at http://www.uveitis.org

I am sorry for my ignorance on this matter,
Wishing you the very best,
Mike

http://www.google.com/search?hl=en&q=Re ... h&aq=f&oq=

here is a search of the literature on Relapsing Polychondritis and uveitis.
the first article is a case study that outlines historic use of chemotherapeutic drugs to include cyclophosphamide in acute cases of retinal involvement.

wish you the best,
Mike

here is a search on Autoimmune Retinopathy:
http://www.google.com/search?hl=en&q=au ... mune+retin

Did you mean 'PR", paraneoplastic Retinitis?
http://www.pubmedcentral.nih.gov/articl ... tid=446200

Liz,
My wife was diagnosed with Auto-Immune Retinopathy in 2003 and and has most of the same symptoms that you have described. She is also about the same age as you. She has been on IVIG therapy for the whole time and receives the treatment every 12 weeks approximately. Doctors don't really understand how it works but it has managed to take the anti-bodies that have been attacking her retinas out of her blood system. She doesn't really think that it has helped her vision much but we keep hoping that something new and better will be discovered. Good luck with your treatment and I wish you well. I know that it is a tough thing to be dealing with. Please reply with the results of your treatment. My wife has not tried the steroid route yet.

Hi Liz,



I have had decreasing rapidly peripheral vision for the last 2 years. I was originally diagnosed with retinitis pigmentosa but recently after visiting Moorfields hospital in London they have diagnosed azoors. Acute zonal occult outer retinopathy. They came to this conclusion after electroretinograph testing ERG and explained to me that my own immune system was attacking my retinal cells and that I would be given drugs to try and combat this.

After reading about autoimmune retinopathy and the drugs you are talking about seem to be the same thing.

My right eye has very little vision while my left eye is much better but deteriorating rapidly. I cannot open my right eye in sunlight at all and have no peripheral vision in either eye. I suffer from shimmering in the peripheral field and flashing lights. My eyes take a long time to adjust from light to dark.

They tell me that on examination my retina looks perfect and many other tests have come back negative.

Could you please tell me of your symptoms and any information that would be of use to me.

By the way I am 50 years old this year and have excellent forward vision in left eye but not so good in the right and no history of eye disease in my family.



Regards



Brian

Liz, have seen your post from February. I am newly diagnosed with AIR and find only negative things about the "drug cocktail" How did your followup go in May and are you going to the Kellogg Eye Center in Michigan? Thank you and hope all is going well.

Hi, The checkup in May showed I had stablized but had not improved. My next appointment is Sept 17th and I feel I may have recovered a little in the outside perimeters of my visual field .. strange I see areas I did not see before but them further in I see the typical gray. The pills are really awful to be honest and I understand there is new treatments that will be much better and I really hope so because being on the suppression medicines and the prednisone is really making the quality of life hard. I stuggle with the side effects but I am strong willed and determined so I stay the course but it is not easy. I am going to ask him about some injection I heard about a month ago that is suppose to work better so will update after my appointment. My original appointment was in Sept 08 and from that time to my Jan 09 visit I had deteriorated quite a lot so to find out in May I had stabalized was good news because I was on a fast track to blindness. Hope that answers your question and I will update always after appointments as I think autoimmune retinopathy is a horrible condition as it takes your vision much too fast.

Liz

My 8 year old son was diagnosed with autoimmune inner ear disease two years ago and juvenile idiopathic arthritis last November. We have been seeing opthomologist every 6 months. This last visit he had a significant acuity change and the doctor thought we should just keep an eye on it. We went to the Eye Foundation Hospital in Birmingham for a second opinion and the Dr. said he would perform an ERG to ease my mind and to get a baseline. We had the ERG on Tuesday and the results were abnormal. I was in such shock I didn't get the specifics, only that there was a problem with his rods and that it could possibly be AIR. Had labs drawn and sent to Oregon. He currently receives infusions of IVIG & solumedrol every 6 weeks for his hearing loss, and also a shot of methotrexate 1 x week. I see that several postings have had confirmed diagnosis of AIR- how long did it take to get your test results and what tests did they perform to get your diagnosis. Thank you so much! Ashley

if you are in Birmingham Alabama, USA, please contact Dr Russel Read. he is an EXCELLENT ocular immunologist. he is at the University of Alabama Birmingham. he can employ cutting edge diagnostic and treatment methods for all forms of ocular inflammatory disease processes.
his contact information can be found at http://www.uveitis.org in the patient information section of the site on the SPECIALIST list.
the specialist with the most experience with childhood causes of Ocular inflammatory disease processes here in the USA is Dr C Stephen Foster MD in Cambridge MA. Dr Foster is with Harvard Medical school and MERSI where he practices as well as the Founder of the Ocular Immunology and Uveitis Foundation, the above link will take you to his website and there is an ASK DR FOSTER Forum that you can ask this question of him.
we have a parent's forum that I am going to link this post to.

Wish you the very best,
Mike

Please see the above two posts which have been posted to the Parent's forum


mikehttp://www.iritis.org/phpBB3/viewtopic.php?f=8&t=3612

Liz, is there an update on your condition? I'm guessing you 've been to the University of Michigan. Have also seen your posting on Oprah.com. I'm delaying the medications as long as possible because of some of the side effects. Please let me know how you are. You are my barometer as to waht to do next.

Thank you and God Bless.

mrsgary@bellsouth.net

Hi this is Liz and I my last visit to the University of Michigan was in September and my next one will be next month Feb 18th, 2010.. My OCT test and Goldmann visual test showed I had gotten slightly better in one eye and the other was about the same so I guess it has been successful for me in that I have not gotten worse in a year.. I have basically stabalized which is a real blessing considering how fast I was losing my vision before. If you decide to take the pills you will have to have a lot of self control in that you will have to eat right, take vitamins and watch your weight as the prednisone will add some weight if you don't. I have possibly put on only a couple of pounds at the most. The vitamins are 25000 IUs of Beta Carotene, 20 mgs of lutein, 800 IUs of Vitamin E and 1,200 of DHA. If you are a smoker you should not take the beta carotene. I use sanitizer when I go out in public and just generally ask people that I work around, in a nice way of course, to stay away from me if they feel they are becoming sick. I also had a pneumonia shot, flu shot and an H1N1 shot.. plus I take niravam or xanax when the prednisone starts making me nervous.. only way I can handle it. But stablizing is comforting and I hope for better treatments but for now it is working in my opinion since i have not gotten worse in a year. My doctor at the Kellogg Eye Center is Dr. Heckenlively... My prayers are with you and God Bless... Liz

Liz I'm glad to hear things are holding their own. What does slight improvement constitute? What kind of work are you doing? Mine is very tiresome because it is computer oriented all day. Very few breaks. Were you included in Heckenlively's study or did you find him afterward?

Going back to see my Retina Specialist in late March and have a field vision scheduled for early March so we have something current to discuss.

Thank you and look forward to hearing how your appointment goes in February.

mrsgary@bellsouth.net