Autoimmune Retinopathy AIR

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Matilda
Posts: 10
Joined: Wed Nov 12, 2014 10:22 pm

Re: Autoimmune Retinopathy AIR

Post by Matilda » Sat Sep 12, 2015 6:02 am

Hi Peg
I am so sorry that your husband is experiencing these difficulties and feel for your frustration.
I am not sure where you are in America but there are some fine, caring and professional doctors over there and they lead the world in their expertise.
Have any of your doctors mentioned Cancer Associated Retinopathy? May I suggest that you google askdrfoster as a possible source for some initial assistance.
I am aware of what a long hard journey this is and recently have become iron deficient from the treatment, I am waiting to find out what my medical team will do to try to correct this. In the meantime I am feeling very fatigued and lacking my usual sparkle. Fortunately my eyes remain stable.
I will keep you in my prayers.
Cheers Matilda

Pegofmar1
Posts: 9
Joined: Fri Sep 27, 2013 7:12 am

Re: Autoimmune Retinopathy AIR

Post by Pegofmar1 » Fri Sep 18, 2015 5:06 pm

Thanks for your reply and kind words. Right now he is "doctored out" but will be getting some prescription sun glasses which the optometrist thought might help a little. I sure haven't given up hope. There is a Dr. Heckenlively in Ann Arbor, Michigan and I have the wish of going to him if we get to Michigan to visit my brother next year but of course the decision has to be my husband's.

Thoughts and prayers for your continued progress. Peg

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

Re: Autoimmune Retinopathy AIR

Post by GAL » Wed Sep 23, 2015 12:12 am

Hi everyone,

Matilda, cheers and high fives are in order in celebration of your stabilization. This is one of all of our dreams and so glad that it is happening for you. I do hope the neuropathy and fatigue is addressed very soon or improves.

I returned from another visit with my specialist undergoing testing to evaluate how my treatment has been working and am happy to report that at this point in time things are holding steady. We are still awaiting the results of the anti-retinal and anti-optic nerve autoantibody tests as that takes 2-3 weeks, but I am relieved that my doctor at this point in time sees no need to re-add the cyclophosphamide to my rituximab regime which is currently an infusion every two months.

Over the late spring and summer my blood counts had been up and down and some of it may be attributed to the prophylactic drug, which I am no longer taking – if we ever know I will let you all know. At least I am hoping that it was that and not the rituximab! The human body is so complex it never ceases to amaze me.

Peg, I hope that your husband considers obtaining another opinion though I know it is hard after some bad experiences. I have been there before agonizing over where to go and whom to go with let alone whether insurance will be taken. Unfortunately I do not think that many ophthalmologists or even eye specialists are very knowledgeable about such a very rare disease as AIR/ARRON. Which unfortunately places the patient and/or caregiver into the mode of searching out their own care or making some very difficult decisions. After much online research I had to trust my gut instinct. If you are doubting the diagnosis, then perhaps consider getting both the anti-retinal AND anti-optic nerve autoantibody blood tests done at this time by a doctor (perhaps your diagnosing doctor can help?) that sends them to Casey Eye center so the original retinal test is redone by the same facility that did them the first time. I am presuming, perhaps wrongly, that only the anti-retinal antibody test was done the first time. I see Dr. Stephen Foster in MA and he was the first doctor to test me for both – and I tested positive to several retinal and optic nerve antibodies. I have now done this test 3x through him at our own expense. As you know there are many other doctors mentioned at this site in addition to Dr. Foster in MA, Dr. Janet Davis in FL, Dr. Heckenlively in MI and others. Considerations for me would be cost/insurance, positive reviews of doctor from patients, their approach to treating AIR/ARRON or other rare eye disease and successes, do they do consults, do they send serum to Casey Eye, can you get test result copies for your own records, etc.

I gather that it is your husband’s central vision that is affected –I am guessing by the fact that you list his light sensitivity, blurriness, cannot read, and color vision loss. I assume that your diagnosing doctor did mfERG/ERG, visual field, and other tests. I am not a doctor but based on my cone vs. rod retina cell readings I think the above symptoms tend to go with loss of cone cells of the retina. It is my central vision as well that AIR is attacking, however, I am lucky to be diagnosed early as my visual acuity with glasses is good and color vision is normal. I do see 24/7 pulsating gray areas in my vision and some blurriness. My eyes were more light sensitive prior to my treatments so I suppose that is additional very subjective evidence that my treatment is working?

So, Peg, I hope it is not too forward of me to offer my suggestions and that I do not sound like I am trying to lecture. I do feel it is important to keep on top of this and that might mean getting another opinion from a world class doctor should you not feel comfortable with your present doctor. Of course having the means to do so is another matter. One other thought - has he offered any other treatment options after doing Methotrexate for several years?

Best wishes always,
Ann

PS - Mike if you are out there, hope you are doing well.

Pegofmar1
Posts: 9
Joined: Fri Sep 27, 2013 7:12 am

Re: Autoimmune Retinopathy AIR

Post by Pegofmar1 » Mon Oct 26, 2015 12:59 pm

Ann and Matilda, thank you for your feedback. My husband's eyes are a tad bit better with prescription sunglasses. I tend to agree that having some retesting done at the Casey Eye Institute would be a good idea and hope some day he will want to do that.

Sorry I took so long to respond. I don't check in as often.

I will let you know what we decide to do. In the meantime, prayers would be appreciated and I will pray for you, too. Peg

lsguimaraes
Posts: 1
Joined: Mon Jan 25, 2016 11:18 am

Re: Autoimmune Retinopathy AIR

Post by lsguimaraes » Mon Jan 25, 2016 1:00 pm

Please help needed... Urgently.
I am a 34 year old male from Brazil that started to have visual symptoms back in March 2015. Firstly I had a headache (without aurea), had slept and 2 hours after wake up I had started to see visual disturbances:
1. Watery vision (like an water over my eye that resolved after many blinks) and keeps happening
2. Starbusts around lights
3. Halos and glare from lights at night
4. Cloudy vision around ligh sources
In the following day I discovered that I had a bad light sensitivity (photophobia) and could see little dots of light in my visual field. Taught it was from the headache. I had been to many doctors and everyone said my eyes(besides one that find a low mfERG that looks like a toxicity others said normal ) and brain (had 2 kinds of MRI) were perfect. But the symptoms persisted.
I did a deep research in Google and discovered a disturbance called visual snow. Begin looking for the causes and cure but gave up after a while.
But since that time my eyes had been worsening to the point I am unable to work. The starbusts from lights are huge, even in daylight and from the sun. I have a bad glare from any light source. About August my vision began shaking like it was moving and alive. The visual snow was even worse.
I had been to over 20 doctors(top ones). Some of them say there is a problem with my cones(retina) after ERGs(mfERG and full field) other says everything is normal. Thousands of octs, angiograms, etc.
Late August I had been to the best uveitis specialist in the US, because one doctor was considering autoimmune retinopathy as I had annother autoimmune disease in the past (Parsonage Turner Syndrome and also dry mouth). All the tests came normal. Including anti retina/nerveautoantibodies form Oregon). No treatment so far.
But in the last 45 days my life is being destroyed because I am worsening:
1. Glare is blinding
2. Extreme photophobia even from indoor light (using sunglasses all the time)
3. Huge starbusts
4. Shaking and pulsing vision (specially at a white background, computer screens)
5. Little sperm floaters of light crossing my visual field continuously (specially looking to whit/blue backgrounds)
6. My eyes get easily fatigued from computer/smartphone screens
Some of the doctors think I have visual snow, post migraine syndrome. But it is worsening and I have no headaches. I had never used drugs before. Some of them a completely unusual retina problem not yet described. Some of them think it was autoimmune retinopathy, but the tests were normal.
I had read many posts about autoimmune retinopathy and I share some of the symptoms, but not all of them.
Could you please help me. What do you think? Do you also have halos, starbusts and shaking vision and floaters of light? My visual fields and visual acuity(20/20) are normal.
Had been treated with IVIG but no results. My neuro think it is an autoimmune thing. Tried rituximab infusion but I had a bad allergy reaction.
Please I really appreciate any help. I am desperate and unable to work.
God bless you.
Thank you in advance.
Luiz Guimaraes

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

Re: Autoimmune Retinopathy AIR

Post by GAL » Tue Feb 02, 2016 9:57 am

Hi All,

Thought I would post an update. Happy and scared to report that we are stopping rituximab infusions (cyclophosphamide had already been stopped) as my visual tests have indicated improvement, but those darn retinal antibodies are still present. So hoping that I will remain stable. Subjectively it seems to me that my eyes are less sensitive to bright lights/sun and my symptoms have decreased though still seems that stress increases them temporarily. Has anyone had lasting stabilization after stopping AIR treatment and for how long?

Luiz,

Welcome here, I am very sorry that you are experiencing many visual disturbances and that no one has been able to give a definitive diagnosis. It must be very frustrating as well as frightening.

Not sure I can be of much help but can give you my thoughts and sorry that this may come out kind of random. I was diagnosed with AIR about 2 years ago within a year of the start of my symptoms. Experienced a momentary total white out of vision that disappeared and then continuous shimmering/pulsating zones in my vision. All of my vision tests, MRI, and cancer scans are normal except for mfERG and retinal/optic nerve antibody tests. I do have another autoimmune disease and I do/have suffered from dry skin and dry mouth that are unrelated to my diagnosed autoimmune diseases. Also have “arthritic” pains at times, though hard to separate if this is due to my autoimmune (not AIR) or growing old! So I do wonder if I have the beginnings of yet another autoimmune disease so i am doing my best to do everything I can to avert that via diet, exercise, and lower stress etc.

I read up briefly on your autoimmune disease – that must have been very scary by itself. Were you treated for that disease and if so what did you take for that and how recently?

Sadly it seems that it takes some time for the medical community to diagnosis autoimmune diseases and I imagine even longer if there are overlapping symptoms or perhaps a few things going on at the same time caused by different diseases which would make it hard for specialists to separate? Especially given the variability in how diseases seem to affect each of us despite similarities as well. Given your Parsonage Turner syndrome have you recently been to a neuro-ophthalmologist for their opinion and/or your doctor/rheumatologist who diagnosed the syndrome? It seems you have sought help from the world’s top ophthalmologists, which made sense given your symptoms so perhaps taking a look from another angle may help?

Have you been seen by a “hospital/medical center” where there are specialists of many fields to help pinpoint what exactly is happening. I live in the US but was very impressed with Matilda’s immunologist giving her a complete work up to help pinpoint what is going on. Here in the US imagine that would mean a top university medical system but not sure what is available in Brazil.

Do your doctor’s think that IVIG would have helped your visual symptoms if they were related to autoimmune causes? Perhaps the fact that it didn't help and that your retina/nerve antibody tests were negative the cause is not autoimmune? Idk, not doctor. The specialists that I saw while being diagnosed had thought I had migraine aura, without the pain especially since I had suffered migraines in my youth/young adult years, but my visual symptoms persisted and became progressively worse so that theory was discarded. I did not and never experienced any visual snow symptoms though I also had come across that in my Google searches. Just found this interesting article – could it help?
Visual Snow – by James T. Fulton
http://neuronresearch.net/vision/clinic ... vision.htm

I hope that you and your doctors area able to discover the cause soon and I will be praying for you along with everyone else here.

Ann

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

Re: Autoimmune Retinopathy AIR

Post by GAL » Tue Feb 02, 2016 10:26 am

Luiz,

Not sure about that link I just posted as just found another and they seem to feel Fulton's theories not accurate...
http://www.migraine-aura.com/content/e2 ... ex_en.html

There is this discussion at a blog connection at Mayo Clinic (respected hospital US site) on visual snow and research that was being done in 2012:
http://connect.mayoclinic.org/discussion/visual-snow/

Hope some of this helps,
Ann

AddyIris
Posts: 4
Joined: Thu Apr 14, 2016 2:29 pm

Re: Autoimmune Retinopathy AIR

Post by AddyIris » Fri Apr 15, 2016 3:07 pm

Hello!
I was recently diagnosed with anterior uveitis. I experienced the same symptoms for 5 months on and off in 2013, but I wasn’t diagnosed at the time. Since then, my night vision has deteriorated, I’ve become even more light sensitive and my vision gets foggy sometimes. I also have some floater-ish phenomenon that’s hard to describe.

As of now, they haven’t found a cause for the uveitis via the normal blood tests. I do have Hashimoto’s thyroiditis and fibromyalgia. My fundus exam and angiogram was normal. My ERG was abnormal and showed a delay in my photoreceptors? My doc has some other blood tests out, but we’ve discussed doing antibody testing for autoimmune retinopathy if those tests came back negative.

From what I’ve read, it seems like AIR might match my experience, but because my eyes are atypical (extreme myopia, scar tissue from peripheral retinal laser surgeries, surgery for posterior subcapsular cataract with lens sutured to iris in left eye & right eye removed due to damage from retinal detachment) I’m not sure what symptoms really look like and I’d love to hear some first hand accounts…

These are some of my questions:
Is iritis caused by AIR or just concurrent?
What was the first symptom you noticed?
How quickly did the symptoms of AIR progress for you?
If you’ve experience loss of night vision, have you lost it altogether? Or has it just decreased very noticeably? Does anyone use a cane to help navigate at night?
Do you experience floaters? If so, what kind?
Have you lost enough daytime vision to require low vision aids?


I would really appreciate any other information you could share! I am also posting this on the AIR thread, so sorry if you get a double dose of this! :)
Thank you!!!

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

Re: Autoimmune Retinopathy AIR

Post by GAL » Mon Apr 18, 2016 12:24 pm

Hi AddyIris,

Sorry that you are having these types of symptoms. In my opinion once you are in the realm of uveitis/iritis or possibly AIR, then it is best to get a second opinion from an ophthalmologist trained in ocular immunology as all 3 have the potential to be blinding conditions. After I got my diagnosis of AIR I wanted a second opinion before starting any treatments especially since AIR is even more rare than uveitis/iritis even though the doctors who initially diagnosed me are likely among the best in the area. After doing extensive online research and discussions with my doctors I sought the opinion of world-renowned ophthalmologist/ocular immunologist Dr. C. Stephen Foster at MERSI, http://www.mersi.com/, his clinical practice.

He also runs the Ocular Immunology and Uveitis Foundation to find cures for ocular inflammatory diseases, train ocular immunologists, and provide emotional support for patients. Their site, http://www.uveitis.org/, has a wealth of information, listings of ocular immunology specialists http://www.uveitis.org/patients/list-of-specialists, glossary of terms, research/educational things, support group, an Ask Dr. Foster section: http://askcsf.yuku.com/, and more. Perhaps ask your question regarding Iritis/Uveitis/AIR to his site…read up a little there to get a gist of types of things people ask.

AIR patients can experience a range of symptoms and the disease can affect the central portion of your vision (cones), peripheral (rods) or both. My first symptom was a total white out of vision until I closed my eyes and opened them again but then noticed a pulsating gray area that became more numerous in both eyes within a week. I am lucky that the symptoms progressed slowly and may have stabilized or even slightly improved after treatment directed by Dr. Foster. However, there are some patients whose AIR progresses much faster.

Others will have to answer your other questions as I caught my disease early and never actually lost vision only have 24/7 pulsating gray areas that are noticeable on light colored walls and floors in certain lighting situations. I do have a few floaters but I think a lot of older people do so not sure how that ties into my symptoms especially since I have the beginnings of cataracts too.

Fundus, angiogram, visual fields, blood work including some autoimmune diseases and other work, MRIs, were all normal and but mfERG was abnormal and after period 1.5 years indicated progressive deterioration. Also positive for 4 anti-retinal autoantibodies and 2 anti optic nerve autoantibodies from testing done through the Casey Eye Institute in Oregon.

I don’t think it a good idea to compare symptoms, instead I would suggest that you seek the opinion or second opinion of a properly trained ocular immunologist. Seek the list of specialists at the site listed above for help. These doctors are used to seeing complicated patients.

Are you receiving treatment of any kind?

Best wishes to finding out exactly what is causing your symptoms and keep us posted on how you are doing.

AddyIris
Posts: 4
Joined: Thu Apr 14, 2016 2:29 pm

Re: Autoimmune Retinopathy AIR

Post by AddyIris » Mon Apr 18, 2016 5:39 pm

Thanks, GAL! Fortunately, I live in the Boston area, so I've already seen Dr. Anesi at MERSI. I will be going back in a few weeks and I'm expecting that he will want to send my blood out for antibody testing for AIR. I actually went there as a second opinion after my uveitis was diagnosed, because I've been complaining to my regular ophthalmologists about my night vision diminishing, etc. and they hadn't referred me for additional testing. They chalked it up to scar tissue from previous retinal laser surgeries, but that never sat well with me. I had laser surgeries between 1998-2004 and cataract surgery in 2009. I didn't start experiencing light sensitivity and night blindness, etc. until 2013. And unfortunately, I definitely feel like it's progressing. It's just really hard for me to tell what is normal because I've never had normal, binocular vision.
Thanks for the input! Hopefully, I'll hear back from others in the same boat!

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

Re: Autoimmune Retinopathy AIR

Post by GAL » Mon Apr 18, 2016 9:24 pm

Good news, then you are in good hands already and lucky to live so close by! Best wishes.

AddyIris
Posts: 4
Joined: Thu Apr 14, 2016 2:29 pm

Re: Autoimmune Retinopathy AIR

Post by AddyIris » Thu Aug 18, 2016 7:10 pm

Not sure if this is allowed, but just wanted anyone who is still following this to know that I started a FB group for people with AIR. I would love to bpart of an informational and supportive community! Thanks!

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

Re: Autoimmune Retinopathy AIR

Post by GAL » Fri Oct 14, 2016 10:28 pm

AddyIris,
Seems like it would be fine to me. I personally welcome any place for support and information and would never confine myself to only one place anyways. Hope all doing well.

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