Autoimmune Retinopathy AIR

[Mike Bartolatz]

Ann,
Welcome to the group!
Immunosuppresant therapy is the same as immunmodulation just a different way of saying using a corticosteroid sparing approach using DMARD and other classes of meds to quiet down the inflammation.

I am not that up to treatment on AIR so you will have to trust posting from those more familiar with this condition on treatment. DR Heckenlively is the expert on this and I know that DR Foster in Boston also treats this in a similar manner. Each of us is different in how we respond to various treatments so it is hard to say what is the best for you personally. it sounds like you are currently undergoing treatment similar to what others have posted here.

please vent if needed as this is a place to let of steam too. we do understand what you are going through. people without vision problems don't understand what it is like to have to confront vision loss so that cannot empathize or really support you in many instances.

I do have an area of central vision that pulsates constantly. no explanation has been given to me as to causation but it could be an unusual symptom of an epiretinal membrane that I have in the eye. I also have transient vision loss from low serum glucose levels from time to time as I am a Insulin dependent diabetic.

wish you the best,
Mike

[GAL]

Mike,

Thanks for welcome. Based on your site and comments I am consulting with Dr. Foster next month. Need to make some insurance decisions by the end of that month. Despite never meeting him yet I have a gut feeling that his advice and suggestions would be the best course, but still anxious about the entire thing. My ophthalmologist thought very highly of him. Still sometimes hope someone tells me that everyone was wrong with their diagnosis, but pretty sure they are right on.

Sorry to hear you have central pulsating areas among your other issues. Have you ever been tested for gluten ataxia or Celiac Disease? Wondered this based on some of your other symptoms non eye related but nervous system related or am I not remembering things right?

Hoping the others chime back Ina's curious how they handled working and everyday life with treatments. I am sure everyone's reactions are different but hearing how others cope gives hope even if you can't manage the same way.

Back to meal preps!

Ann

[Mike Bartolatz]

make sure that you have an appointment at MERSI when DR Foster is there, there are other doctors that are immunologists that you will see as well as ophthalmologists who are pursuing advanced training in Ocular immunology called 'fellows'. they will examine you prior to seeing him. then he will check you out, look at your records and tests and will then comment. he is an outstanding doctor and patient advocate. I have been 'working online' with him for over 15 years now, have gotten training through him via A medical CME course on inflammatory eye disease and it's diagnosis and treatment through the American Academy of Ophthalmology so that I can help get people the care they require from various Ocular Immunologists around the World.
Please tell him that You are there because of my efforts at Iritis.org.

wishing you the very best,
Mike

[GAL]

Rest assured you were already marked down for where I learned of him from! Also did ask to see him. Thanks for your thoughts. Have great weekend!
Ann

[tracifrankenberger]

Hi everyone. I came across this forum while researching possible diagnoses for my loss of peripheral vision in my left eye. My latest appt. at Kellogg eye center was this past Monday. I saw Dr. Johnson and Dr. Kahn (sp?). So far, I don't have a definite diagnosis as test results are not consistent with any of the six possible causes of my symptoms. Needless to say, I am frustrated, confused and somewhat fearful. I have a follow-up at U of M in July. I have seen a total of about 6 or 7 specialists so far. My biggest frustration at the moment, aside from the lack of a diagnosis is the fact that I am experiencing aching and soreness in my affected eye. Sometimes it just feels itchy or irritated and others there is an ache behind my eye that feels like someone is trying to suck my eye out of the back of my head. Often it feels as though I have been slapped really hard in the eye. I have mentioned this to every specialist I have seen and they tell me there is no reason they can see for the pain and therefore can't offer any suggestions or treatment. I have the impression they don't believe me, but the pain is very real. Their best guess as to diagnosis is AIR or Retinitis Pigmentos, although I am told both of those are almost always in both eyes. I have read your comments about Dr. Foster and am considering making an appt. To see him. My biggest fear is that symptoms will spread to my other eye. Any support, insight, or feedback would be appreciated. Thank you!
Traci Frankenberger

[Mike Bartolatz]

Welcome to the group Traci!
pain behind the eye can be linked to a couple of things. usually it is associated with posterior scleritis. this can be imaged by using computer assisted Ultra Sound (B-scan ultrasound) or by MRI with contrast (MRA) the MRi can also image tissue behind the eye to look for a cause with them.
the scratchiness is usually found with severe dry eyes. the lacrimal gland doesn't produce enough fluid to combine with the lubricant part of the tear film secreted by the the meibomian glands located in the upper eyelid along the lash line. get some good quality lubricating eye drops such as Refresh or theratears and use them every hour or so. if using steroid eye drops, wait about 15 minutes before putting the lubricating eye drops. do you have crusties forming in the corners of your eyes? this is the lubricant part of the tearfilm which can't be suspended in the fluid that isn't being produced. I can tell you how to cope with this so tell me.

additional reason for eye pain is linked to optic neuritis, MRI with contrast can image the optic nerve behind the eye to see if there are problems with it as well.

do you have a systemic autoimmune disease present?

CSF is one hell of an ophthalmologist and a friend to us all.

wish you the very best,
Mike Bartolatz

what state are you in now? u of m could be several states.

wish you the best,
mike

[tracifrankenberger]

Thank you for your response, Mike and for sharing your wealth of knowledge on this forum. I have found it to be very informative and it is certainly helpful to know that I am not alone in what I am experiencing. I haven't been diagnosed with a Systematic Autoimmune disorder, but it is my feeling that there is more going on in my body that Dr.s have yet to get to the bottom of. I have also been experiencing extreme fatigue and frequent upper respiratory infections. My family Dr. did blood tests for MS and Lupus which were negative. I also had an MRI done and they did not see anything abnormal looking.

Re: "crustiness" in my eyes, I do get it occasionally, but that has not been particularly bothersome. I will go get some of the eye drops you recommended and see if that helps.

FYI...I live in Indiana, not far from South Bend and Notre Dame and am 47 years old. Thank you again and all the best to you as well.

[Mike Bartolatz]

have they checked you for histoplasmosis? have they looked into Sarcoidosis?

go to http://www.uveitis.org patient information section of he site. or see if Dr Heckenlively the foremost expert on AIR can take a look and comment on care.

Wish you the best,
Mike

[tkrueger]

Ann,

I haven't checked the board in a while and just now saw your post about your AIR. I was diagnosed with AIR a year ago in May, and I believe we caught it fairly early. I'm in my late 50s. Although I've read everything I can find on this autoimmune disease (which isn't much), I can only write about my own experience. I have areas of peripheral vision loss in both eyes, but other than one blurred spot in my right eye, my central vision is still good. I see shimmering lights, have floaters, and occasionally see bright flashes when I close my eyes. My night vision is poor and bright lights bother me. I've had intraoccular steroid injections and take immunosuppressants. I started out on Celcept but was changed to Azathioprine. I also saw a dietician who specializes in autoimmune diseases and began a strict diet. My last set of tests showed that my vision loss has stabilized. What is particularly significant about that is that the steroid injections had played out when the tests were run. My retina specialist has warned that I could not continue those long-term. I haven't had to take systemic steroids so far. So, at this point I'm cautiously optimistic that I'm able to hold steady with the Azathioprine and my diet. I've had no side effects with my medication.

I do want to note that my retina specialist in Austin said that she had learned of a clinical trial for AIR patients would be taking place in Austin. Since I'm holding steady, I don't want to risk making any changes, but others in this group who have not been able to stabilize their vision loss may want to seek more information about the trial.

My best to all, and Ann, I hope your doctors find what works for you.

Terri

[Mike Bartolatz]

Terri,
I am glad your eyes are doing well at this time. I pray it stays this way for you.

thanks for the update,
mike

[GAL]

Hi all,

Terri - thanks for your input. I am about same age as you, which I think is common with AIR especially npAIR. I too have read most everything I can find. My AIR may have been caught even earlier or perhaps my disease course is just slower than most? It first started for me just over a year ago in January in one eye and then noticed in both eyes. I see pretty clearly, but more haze than last year and lots more pulsating spots in both eyes than in the beginning. It seems to be mostly central vision and occasionally I see some odd objects for bit after seeing bright lights. Sometimes it is even too bright near windows while indoors and need to wear sunglasses inside in some situations. It is supposedly good to catch it early as maybe early treatment may yield better results, unknown, but it also is harder at earlier stages to get certain treatments past insurance and even doctors. What do you mean by the steroids having played out, that they were no longer actively involved in your stabilization? Glad you have stabilized.

Thought I would let all know how my visit with Dr. Foster went. He has an incredible, patient oriented facility and he is a very knowledgeable, caring physician. My visit was for confirming the diagnosis and to learn about treatments and he was expertly thorough. He did not give a specific recommendation since there is no establish treatment protocol, but I really appreciated that he gave his reasoning behind his treatment choices. He definitely gives the patient confidence that he can help and I recommend anyone to visit him or be treated by him.

Regarding IMT what precautions do you all take while on IMT and what types of blood testing monitoring do you undergo while taking IMT? I have some more things to work out before starting and will let you all know what how it goes.

Meanwhile life is plenty busy to keep me from being too preoccupied with what could be a depressing disease. Best wishes to all with this and with other eye issues. Thanks again to Mike for putting his heart and soul into supporting those of us with eye diseases.

Ann

[GAL]

Another question. When taking IMT does it matter name brand vs. generic drugs? I know it depends on one's insurance plan but are there problems with the genetic drugs? Does anyone worry about this? Thanks.

Ann

[GAL]

Found several great places for answers for people undergoing Immunosuppressant therapy including while searching the uveitis.org patient support site there is nice QAnd A section at http://birdshot.org.uk/birdshot-overvie ... infections? This is the Birdshot Uveitis Society site. I will have to back and read all the post at the uveitis website too. Starting IMT soon and must say get very little information from my doctors on how to live life while on treatment.

Mike, I hope it is okay to post these links.

Hope some of you return soon to this site with updates as to how everyone is doing.

Ann

[Mike Bartolatz]

all generic meds are bio equivalent that said, yes some prefer the brand name as is the case with topical eyedrops where Pred Forte is much superior to generic, the molecule is smaller and penetrates deeper into the eye. even Durezol penetrates much better but can't be used for more than a couple of weeks as it causes glaucoma easily.

more of a fight with your insurance when you want the brand however.

my best,
Mike
sorry for not responding sooner. I have been very busy and also very sick. have to have ulnar nerve surgery soon due to numbness I my left hand and muscles are starting to atrophy. difficult to type without making mistakes. msb

[GAL]

Mike,
Had been worried that something was up. Prayers for you and your upcoming surgery. Certainly take break from the tons of online support you give in many places. You are an inspiration to all. Thanks for your continued support and know that zillions are rooting for you.
Ann