Autoimmune Retinopathy AIR

[kam]

I am new to this group. I am a 67 year-old female treated for diabetic macular edema in my left eye for the past 5 years with monthly Lucentis injections. This condition is stable. A few months ago I noticed bilateral constriction in my visual fields and increased difficulty with night vision and photo sensitivity. Cataracts are not advanced enough to cause these symptoms. My retinal specialist speculated that it may be an autoimmune issue, specifically cancer- associated retinopathy or CAR since I was diagnosed and treated for stage 1 breast cancer 2.5 years ago. A recent anti-retinal autoantibody test sent to Casey Eye Institute showed positive - moderated staining of the inner nuclear layer in the retina. My specialist who has been wonderful through the years admitted knowing very little about AIR and CAR. I live in the Bay Area and wondered if anyone knows of doctors who have studied and treated patients with these conditions. Thanks.
Kathy

[Mike Bartolatz]

you might contact DR Ira Wong there in the Bay area, he can guide you to a specialist. he is one of the top ocular immunologists in the USA. his contact information can be found at http://www.uveitis.org on the specialist list in the 'about the support group' section of the site.

wish you the very best,
Mike

[Pegofmar1]

Hi,

My husband Tim has Autoimmune Retinopathy and I have been reading the Forum posts overseen by Mike Bartolatz.

Tim's problem is unusual in that 3 years ago he had small cell cancer in a tumor in the heel/ankle of his foot. Small cell cancer with unknown origin is the diagnosis. It took 6 months to get a diagnosis after he went through much pain even when in bed at night (the docs thought it plantar faciitis or torn tenden until MRI was done).

The treatment was chemo and radiation given that small cell is a fast growing cancer. Thank God he is cancer free but sometime during treatment his eyes started deteriorating and have never gotten much better. After seeing several doctors and doing at least 3 Goldman field tests, prednisone IV treatments, we are now seeing Dr. Mark Dacey at Colorado Retina Associates in Denver and Aurora, CO. We have seen maybe 3 or 4 neuro opthamologists previous to finding Dr. Dacey who did recommend going to Ann Arbor and seeing Dr. Heckinlively which we have not done.

Was happy to find that Liz is a patient of Dr. Heckinlively (Dr. Dacey recommended we see him), but again, her AIR does not 100% mirror Tim's as her treatment is different, medication wise.

Dr. Dacey recognized Mike's name when I spoke about the Forum and of course he is familiar with the names of Dr. Heckinlively and Dr. Foster. He learned under one or both doctors and he went to the latest meeting in Utah back in January where AIR was discussed.

Dr. Dacey has him on Methetrexate for now because it in particular will help prevent the cancer from returning. Dr. Dacey said there are about 13 meds out there for the treatment of AIR, depending on the patient's needs.

Dr. Dacey respects this forum, but of course he advises being careful about what we read and what others are doing, given each individual case is just that.

Thank you for listening and you have my permission to forward this email on to Mike if it helps. Peg Diesburg, Aurora, CO

PS Forgot to mention Tim had surgery (a victrectomy) on his worst eye, the right one, by an associate of Dr. Dacey hoping it would improve, but it did not. Now they are hoping to save what is good in his left eye. Prednisone IVs helped a little but no one wants the side effects, so now the Methetrexate and his right eye seem to be maintaining the remaining vision.

Tim's main complaint is the "whiteout" he experiences when going outside on a sunny day; we keep it dark in the late afternoon when the sun hits our place. He wears two pair of sunglasses outside, a regular pair and the overpair sold at Walgreen's for about $20.

He is not in any pain but does have blind spots and has given up driving for now.
He used to enjoy sporting clays, a shotgun sport, and that is over for him. He does question whether the treatment was the cause but doctors say no, so we do the best we can.

And finally and so importantly, It really does help to read the forum posts because we do not attend any support groups for this. It helps me in particular, as a caregiver, to know there are others with AIR.

[Mike Bartolatz]

I am glad your husband is currently under the care of DR Dacey who is highly recommended by Dr Foster BTW. And is the best specialist available in Colorado. It is also encouraging to know that he is aware of who I am and please know I and others here will do all we can to help you and your husband through this. I moderate online forums for DR Foster's online support groups too so that is where he most likely knows my name. I send people to him with Sarcoidosis related uveitis too.

I am pretty Ignorant about AIR as my own experience is with Pan Uveitis but some of the same meds used to treat AIR are also used to treat uveitis and posterior uveitis can be confused by some doctors as a diagnosis for AIR. Dr H. would be a good place to get a second opinion as he is the best in the USA for this type of condition. the main thing is to make sure that cancer is not active in the eye as it can also be confused with this stuff. since your husband seems to respond to current treatment he may well have a chance that it won't progress any further.

For your information Dr. Foster asked me to moderate forums teaching patients about uveitis and other ocular inflammatory disease processes, he also asked me to take a formal training in this through a medical continuing education class he gave along with a number of other top specialists back in Boston several years ago so that I could provide appropriate information to people and I use that experience at this site as well. I only provide peer reviewed articles for individuals to consider at this and other sites that I participate at, articles that you can trust. while discussion forums can provide erroneous information I try hard to prevent that from happening in discussion here.

wishing you and your husband the very best,
Mike Bartolatz

[Pegofmar1]

Thanks, Mike. I always felt you were quite knowledgeable.

We just saw Dr. Dacey and Tim's good eye is now 20/30 but he still the blind spots and the outside blurriness and whiteout.
I saw a link about new drugs for the toxic side effects of Methetrexate but have not joined in order to read it.

Oh, I forgot to ask, have you or anyone else heard of the Norton Protocol in regard to autoimmune diseases. A woman who had Lupus and was better in two weeks from trying it, is selling an Ebook and from what I read on her website, there are 5 steps to a cure. She is carefully guarding her copyright protection and wants sales of the book but I have not bought it. According to Herman Norton, immune diseases are supposed to originate in the extracellular matrix (I have no clue about the meaning of terms like that, by the way). Tim would have to be convinced to try a holistic solution because he thinks AIR is too big of a problem and needs to be treated as quickly as possible.

I will let you know of any changes in Tim's condition. Peg

[Mike Bartolatz]

save your money and stick with what DR Dacey or DR H indicates is appropriate.

just my two cents,
Mike

[djk]

Update:

I had my 1st 2 Rutixan infusions in July and I receive IVIG infusions every 2 weeks for my Autoimmune Retinopathy.
Last week I had my 1st eye check and Goldman Field test by a local doctor since starting Rutixan and increasing IVIG to every 2 weeks.
One new blind spot in my right eye appeared on the Goldman Field test.
My left eye the bad one, remained stable.
The doctor also took pictures of my retinas and compared to 3 months ago, said they looked similar.

The plan is to continue the drugs and get checked again in January. In February I see Dr. Janet Davis again.
I will be interesting to hear her evaluation.

All the best,
-Deb

[Mike Bartolatz]

sorry to learn of the problems with your 'good eye'. lets hope the drugs start working soon for you.

wish you the very best,
Mike

[Pegofmar1]

Hi everyone,

Do you have any suggestions for hobbies or activities for people with poor vision. Tim likes to watch what he can see on TV. Reading is slow for him and he lacks patience for that. He has always loved the music of the 50's, too, and does listen to it. He once was involved in building a model sailing ship before his vision problems and I wish he could do something like that but not as complicated or with such small pieces. It is probably important to make the eyes work at something. A big puzzle might be good.

A lady in our building with macular degeneration took it upon herself to learn Braille and now takes a class for the blind or low vision that involves learning to cook (she says she wore a blindfold and worked with two people alongside her who had a good sense of humor). She says it is a fun class and good to be with others in the same boat. I was hoping Tim might want to do something like that but he is not a group person right now. Maybe some day.

Thanks.

[Mike Bartolatz]

Sorry as I have no recommendations for hobbies. there are programs available for the computer that read and take verbal commands. a very large monitor can also be used to help him read as the TV sets today can be used with the computer through even WIFI. puzzles might cause more frustration negating any positive feeling from success in doing a puzzle and then this might exacerbate depression he is most likely having. getting him to go for walks and just hugs would be the best thing you can do for him right now. he is probably feeling very 'alone' with his vision loss. you might also get him to take a course at blind rehab in use of a cane while he can still see a bit. tripping is a big problem and the can will help to prevent this. it also signals to others that you are vision impaired so they will get out of your way in most instances. you can also take a course to help him to adapt with eating skills and how to properly help him up stairs and guide him while walking along side him. there is a right way and a wrong way to do this. how to put food on his plate and how to describe where the food is located on the plate is also important.

wish him the best for me please,
Mike

[Pegofmar1]

Thanks, Mike. Your comments were helpful and I will pass along your good wishes. We do take walks around our retirement complex which he is familiar with now. He does worry about tripping and we are vigilant when we walk with him to anticipate what is ahead. I will pay more attention about preparation and eating challenges, I just want him to remain as independent as possible for his own confidence and self-worth. This is a learning process for both us us, that's for sure. We can all use more hugs, too. Thanks again and best wishes to you in your journey as well.

[Mike Bartolatz]

most states have a 'dept for the blind' contact them for assistance on this topic. they have 'books on tape' for example that you can have sent to your home for free. if you husband is a veteran, he might get help through the Veteran's administration which has a wonderful program to assist blind vets. contact the VA for this and the local VFW for assistance in getting him care through the VA. you can also get some training in how to assist him. for example look at his plate of food and then imagine it as a clock face. tell him his meat is at 6 o'clock, potatoes at 3 o'clock etc. always make his plate of food the same way so that he will know where it is located. they make watches that 'talk' for the blind. they also make an alarm that fits over the edge of a cup so that it sounds when it is full making it possible for him to pour his own water, coffee etc.. let him take your arm when you walk along side him. always tell him to step up when he gets to stairs an tell him how many steps are present. I had to learn this simple things when my brother went blind from diabetes and also used them to help my dad when he went blind from stroke. Cane training is very important for him to learn and it is easier when he still has some vision.

wish you the best,
Mike

[djk]

Thought that I would give you an update on my treatments for Autoimmune Retinopathy.
I have been on Rituxan for 6 months. I get 2 infusions 2 weeks apart every 6 months.
I have been on IVIG for just short of a year. I started a 1 a month. In July 2013 when I started the Rituxan I started getting IVIG every 14 days.
3 months into treatment I had one new blind spot on the Goldman Field test.
6 months into treatment my eyes had deteriorated more aggressively. The blinds spots were growing and running together.

Next week I will be adding Cytoxan infusions to the mix. I will receive treatment once a month.
My doctor said that I can not stay on this drug more that one year, due to side effects.
Cytoxan is used for organ failure and Vasculitis in SLE Lupus which I have. It used to be used for breast cancer until new drugs became available for that.

Side effects:
Rituxan - I get fatigue for a few days after the steroids that they give with the infusion wear off. I sleep a lot during that time. It does help some Lupus symptoms.
IVIG - I did not get any negative benefits. I helped my Lupus symptoms.
Cytoxan - I am told that nausea is a problem, they give another drug with the infusion to help with it. Also, the doctor gave me pills for the days after the infusion.
I was also told by the nurse that my hair could thin, but not to expect loosing all of it. Also, my immune system will be radically reduced on all of these drugs.
So I will be really susceptible to infections. Cytoxan has put Kidney failure with Lupus patients in remission.

Please, I need positive thoughts......I pray this works.

Best regards,
-Deb

[Mike Bartolatz]

Deb,
please know that positive thoughts are coming your way and I'll keep you in my prayers as well.

Good luck with your new drug cocktail too.

my best,
Mike

[GAL]

Hello, female, mid 50s, diagnosed with AIR based on ERG, mfERG, ARAs retinal antibodies, clinical symptoms, and I have an Autoimmune disease. Seems to have been diagnosed at much earlier stage than others though treatment options are not different - intraoccular steroids or Immunosuppressant therapy-celcept, methyl-something, or cyclosporine. Visually I see thru one eye at a time pulsating numerous dark areas, ocassionally starting to see them with both eyes at same time. Affects my central vision mostly and eyes are sensitive to bright light. I have been reading the board though admit to having hard time remembering all so sorry if questions may be redundant.

Curious as to what your symptoms were when you started?
What drugs you took and side effects and were you able to work?
Did you have improvement?
Did you try intraoccular steroid injection that slowly releases doses rather than prednisone?
Is immunosupressant therapy same as immunomodulatory?

Sorry for so many questions. Thank you all for being willing to share information as it is certainly a very isolating condition! Special thanks to Mike for monitoring this board!

ann