Autoimmune Retinopathy AIR

[lizj56]

Hi Wolfman, I've taken the cellcept, cyclosporine and prednisone. For over 2 years I took 20 mgs of prednisone, 1000 of cellcept and i believe it was 1000 mgs of cyclosporine. It stabilized me for the most part and when I had my antibodies tested I was down to only one band which the doctor suspected was not dangerous and considered me pretty much a success as far as stopping the the antibodies. That was last spring and now I am taking 1500 cellcept and 10 mgs of prednisone a day. I believe at some point they will take me off the cellcept as well but they are trying to make sure i do not flare up again. Putting me on 20 mgs of prednisone was in my opinion a high dose for 2 years but the results have stopped me from losing all my vision. I have not changed much from when I first started the treatment so I highly recommend it but the truth is it not easy to do. Just going to 10 mgs of prednisone has made me feel and look more normal but still hard to tolerate. I know my doctor had a problem with taking me down to 5 mgs because he said it took at least 10 to keep the inflammation down. He debated the 7.5 but decided on 10 mgs. You have to watch your bone health with the prednisone, especially long term use. As far as the other 2 medications you have to take monthly blood tests I assume to make sure your kidneys and liver are functioning okay. If not you would have to obviously get off them. Have not really improved so much as stabilized so in my opinion that is a good thing in itself. At least until they find a cure or some regeneration of the retina. Think it would be smart to increase the prednisone as long as you take the calcium, Vitamin D and possible reclast for your bones. Signed up with a researcher at Bascom Eye Center in Florida for clinical trials they will be doing on humans in about a year and a half. So that's my story so far.. Pray you find your answers... Best Regards, LIz

[Wolfman]

Liz, thank you kindly for your response. We really appreciate it. We will see the specialist this month and will ask ably the steroid dose. Our specialist spoke to Dr Heckenlively before starting the treatment but wanted to avoid higher doses of steroids if possible. My wife started on 40mg for a week and then reduced the dose each week until she got to 5mg a day. The way my wife's vision declined was initially in a series of "steps". These were events where her vision got clearly worse just in one day. This happened three times over about a 5 month period. Since taking the medication these flare ups have not occurred but her vision is slowly getting worse. The monthly Goldman field tests show this. We think it may be time to increase the dose of the steroid for this reason. When the initial dose of 40mg was given my wife noticed an immediate improvement in her peripheral vision but the specialist cautioned about putting too much emphasis on that because it is all about the long term and not a short term improvement. We have to suppress the immune system and stop it from attacking the retina and then get it to learn not to attack the retina ever again! Thank you for sharing your experience. Given the rarity of the condition, it is difficult to get guidance to make the right decisions. Take care, Wolfman

[lizj56]

You are welcome Wolfman, please let us know how your wife's medical appt goes because as you say there are very few of us and anything new will be quite valuable information. Best of luck and will say a prayer for you guys... liz

[BHM]

Thank you Bobi. Did you take the other two pills at the same time too? And may I please know how long you took the 40mg for? The 5mg sounds low to me too. Regards, Wolfman

I took cyclosporin with the prednisone. But, before that, I had a Rituximab infusion which is supposed to be the strongest drug of all but it didn't help me. I recently had another Rituxan infusion but my vision continues to decline. Nothing has worked for me unfortunately. Please keep us posted as to your wife's situation. As Liz said, there are so few of us who have the disease that any information is helpful.

I took the Prednisone for about 3 or 4 months total. BTW, if you are interested, the NIH is now doing a study with Rituxan for AIR. That is how I was able to get the drug. Everything is free there including the consult. If you want any additional information abut it let ke know and I'll send it to you.

How you describe your wife's vision loss was just like mine. I'd wake up one day and more vision was gone in just one day. That happened a few times.

Bobi

[JenL]

Hi, I'm a 38 yr old female and began having symptoms last year after having my 2nd child. It started with shimmering in sunlight and loss of central vision. It has progressed to loss of color sensitivity and the white out, but my symptoms are only in one eye. I'm in Dallas, Tx and see a retina specialist and neuro-opthalmologist. I did the OHSU labs and I'm positive for a retinal antibody, but not recoverin. I've had MRI & CT of brain & orbits and CT of thorax, abdomen & pelvis, thankfully all scans are clear. My neuro-opthalmologist has been treating me with prednisone. I started at 80mgs about 8 wks ago and have titrated down to 10mgs. The only other meds I take are Prevacid to protect my stomach and calcium + vit D. I'm tolerating the prednisone pretty well except for some insomnia at the higher doses. I'm not seeing an improvement in my vision, although my neuro-opthalmologist says there is improvement in the visual field tests I do every 2 wks. My retina specialist has referred me to the National Eye Institute b/c he has never treated a pt w/symptoms in only 1 eye. He feels the prednisone is not working b/c the retina scans (OCT?) do not show improvement. I told my Neuro-opth about going to NEI and he feels it's too soon. I'm feeling much apprehension b/c my docs are not on the same page and my neuro-opth is not very forthcoming with info. So, I'm going to NEI in a few weeks to see what they recommend. I'm wondering what other vitamin supplements I could be taking in the meantime - beta carotene, fish oils? I'm wondering if there is a link to pregnancy? I did have issues w/fertility due to anti-thyroid antibodies & anti-phospholipid antibodies. I also have not been tested for all the various related autoimmune diseases. Who does this testing? An internist or your eye docs? I'm going to look for an ocular immunologist in my area but any recommendations are appreciated.

[Mike Bartolatz]

Dr Callanan (sp) in Dallas or Dr lewis at Baylor are the ocular immunologists that I recommend in Texas
the ladies here are seeing an Expert in autoimmune retinitis so go back through messages in this thread and find the contact information for him. He is NOT at the National Eye Institute BTW.
DR Nussenblatt is a very skilled Ocular Immunologist at the NEI BTW and is the head of laboratory research there.

I am sure everyone will greet you soon,

Wishing you the very best,
Mike

[JenL]

Thanks so much, Mike. I cannot tell you how relieved I was to find this site and information. Thank you so much for what you do. My retina specialist was deciding between referring me to Heckenlively or NEI/Nussenblatt who he has worked with before at NEI. Ultimately, he chose NEI for the benefit of having multiple immunologists review/consider the best therapy for my case. I hope he is right! Also, is anyone hearing of patients actually having improved vision on immune-suppression? From what I've read on here it seems I should be hopeful for stabilization at best? Also, I'd love to know how often patients are being preventatively scanned due to the cancer concern? So many questions...and I'll probably think of 10 more after logging off.

Thank you, again for providing this forum!

[BHM]

Thanks so much, Mike. I cannot tell you how relieved I was to find this site and information. Thank you so much for what you do. My retina specialist was deciding between referring me to Heckenlively or NEI/Nussenblatt who he has worked with before at NEI. Ultimately, he chose NEI for the benefit of having multiple immunologists review/consider the best therapy for my case. I hope he is right! Also, is anyone hearing of patients actually having improved vision on immune-suppression? From what I've read on here it seems I should be hopeful for stabilization at best? Also, I'd love to know how often patients are being preventatively scanned due to the cancer concern? So many questions...and I'll probably think of 10 more after logging off.

Thank you, again for providing this forum!

I had been at the NEI for 1 1/2 years for AIR. They were wonderful to me. I participated in their Rituxan study. I did not have improved vision and it still continues to deteriorate even after the rituximab immunosuppressive treatment. I've been told, after visual field tests, that it appeared my vision had improved but I knew it did not. If it isn't AIR they will do everything to get to the bottom of it with a variety of doctors under one roof.

Rheumatologists or immunologists usually order lab work for autoimmune diseases. The doctor you will see at the NEI most likely will be Dr Sen. She is an immunologist and the lead investigator for the Autoimmune Retinopathy study there. She studied under Nussenblatt. I wish you the best of luck. Let us know how you make out.

I have the symptoms like you do with the white-out. It drives me crazy.

[Mike Bartolatz]

I'm glad there is activity on this topic as I am learning about it from all of you. I wish I could do more however to make your lives better. rarely does ones vision get better when there has been damage to the retina/macula. stabilization is what is mostly hoped for. I don't have AIR but my vision did improve over time even my epiretinal membranes are getting smaller.

God bless all of you,
Mike

[JenL]

Thought I would post an update since everyone else's info has been so helpful to me. I went to NEI, Dr Sen concurred with the AIR diagnosis but I do not qualify for the Rituxan trial at this time. They were all so very nice and I was happy to receive validation that the treatment I've received so far (Prednisone 20mgs) has been on par with what they would've recommended. Dr Sen suggested I consider adding Cellcept and Cyclosporine. So, after reviewing her recommendations with my local retina specialist we have started the Cellcept 2000mgs/daily and titrating down the prednisone. While I'm told my visual field tests improved w/ the prednisone, my vision has worsened, so I'm eager to see the effects of the cellcept. I'm not going to pretend that these potent drugs don't scare me, but I also cannot stand by and do nothing while my vision continues to deteriorate, especially since in my case it is my central vision. I asked my physician about cyclosporine but he said pts are usually unhappy with the side effects. (gum tissue growth & facial hair) I'm going to see what results I get with cellcept. Heard there has been some success with IVIG therapy and read a previous post from someone who had tried that. Do we know how that patient made out? Curious why more patients are not trying IVIG. I'm also planning to discuss w/my physician the supplements Heckenlively prescribes. Would love to hear recent updates from others on their condition and treatment.

JL

[Mike Bartolatz]

frequently cyclosporine is mixed with another class of medication to make a cocktail so to speak. this is frequently required with posterior segment inflammation to get the immune system to stop attacking the eyes. with specific conditions the specialists have found that specific combinations of meds get the best results for that condition such as cellcept and cyclosporine for AIR or MCP etc.

IVIG is terribly expensive to make is the most common reason for it not being used more often. each dose is about 25 thousand bucks. I can't recall the exact number of pints of blood it takes to make it but is is thousands.

hope this helps,
Mike

[BHM]

I started back on rituxan last month but I'm sorry to report my vision continues its downward decline because of AIR. Last year I tried cyclosporine with the prednisone but that didn't work either for me. My central vision is affected. Everything seems to be getting whiter with loss of contrast. But everyone is different. I had no side effects from the cyclosporine.

As far as being afraid of the drugs, I totally get that, but you will know if they are working in a few months so, if they aren't, you would get off them. If they do work, then between your doctor and you,you can decide how to proceed from there. Many people are on those drugs who have other autoimmune diseases and they do fine with them. I was afraid too but, to me, it was worth a shot. If I didn't try them I'd always be wondering if they would have worked.

May I ask why Dr Sen didn't feel that you qualify for the Rituxan trial?

Bobi

[JenL]

I'm not completely sure why I'm not a candidate for the trial at this time, but I think its because I'm early in the treatment for AIR. She thought I might be the earliest case of AIR they've seen. She mentioned that if issues arose w/ immunosuppression therapy you can stop the oral meds, but once you have rituxan you are committed to it. I will be hoping for the best for you on this round of rituxan. Praying for a breakthrough for all of us.

[BHM]

That makes sense what you say. Try what is known to work first. I do hope, as you do, that there will be some breakthrough for this disease. Keep us updated. Think positive.

[Wolfman]

Hi Everyone, my wife and I saw the specialist in December. We discussed the dosage of the pills and have agreed to leave the dosage as it is. The Goldman field test indicated some stabilization and even some improvement in the right eye. Up to now the vision in the right eye had been deteriorating faster than the left eye. The test showed some deterioration in the left eye. The next appointment is in February. My wife is tolerating the medication which is a good thing. Best Wishes to all of you, Wolfman