Autoimmune Retinopathy AIR

Post here with questions about other autoimmune diseases or conditions.

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Mike Bartolatz
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Re: Autoimmune Retinopathy AIR

Post by Mike Bartolatz » Mon Mar 09, 2015 10:47 am

Ann,
I sure hope that all continues to go well and the test comes back within normal limits. thanks for the update too.

wish you the very best,
Mike
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lizj56
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Re: Autoimmune Retinopathy AIR

Post by lizj56 » Thu Apr 02, 2015 2:38 am

Interesting case from Dr Chen out of Australia who has just received an inheritance from a couple where the wife had autoimmune retinopathy and was treated by R. Chen. She is stabilized now but her story replicates mine so closely. If you have RP simplex or recessive this is very interesting. Or been diagnosed with any peripheral vision problems. Uncanny the similarities to me. Dr Hekenlively wants me to under go the infusion rituximab after he finds out my blood test results. Guess he is determining my white blood type.. Thinks there may be a connection.

Liz

lizj56
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Re: Autoimmune Retinopathy AIR

Post by lizj56 » Thu Apr 02, 2015 2:39 am


Mike Bartolatz
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Re: Autoimmune Retinopathy AIR

Post by Mike Bartolatz » Thu Apr 02, 2015 10:33 am

Thank you for the link and I pray this works for you too!

my best,
Mike
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Matilda
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Re: Autoimmune Retinopathy AIR

Post by Matilda » Fri Apr 03, 2015 9:21 am

Hi All
It has been a while. Ann your news is excellent and I pray that you have now turned a corner with Dr Foster's treatment and remission is not far away.
I was interested to see the post concerning Chen and Lions Eye in Perth WA. This is where I started my journey and they refused to treat me preferring to track deterioration. It was not until I travelled to America to see Dr Foster that he put me in touch with the awesome team at St Vincent's Hospital in Sydney that I had the opportunity for a full diagnosis and the opportunity for a treatment.
I saw the Immunologist in Sydney who admitted me to hospital for a complete work up including a lumbar puncture mid January 2015. The lumbar puncture revealed that my cerebral spinal fluid was 1% out of the target range for an indicator of MS. Normal target range 1 - 14% my result was 15%. The doctor said that this does not mean I have MS and it does not necessarily mean that I will go on to develop MS but it does mean that this disease is systemic and indicators are that it is now beginning to affect my brain.
It was at this point that I stopped arguing about the steroids and asked the doctor to please just treat me however he saw fit to try to stop any further deterioration.
I had been previously assured by doctors at Lions Eye that this condition would be confined to my eyes. Finding out that my brain was now involved was like having the wind knocked out of me. All of sudden going blind did not seem to be the worst thing that could happen.
I was also diagnosed with another auto immune disease and since commencing treatment a rash that I have had on my legs for the past two years is completely gone.
I have now had four treatments of IV Methyloprednisone 1000ml and IV Cyclophosphamide 500ml with IV MESNA to protect against haemorrhagic cystitis. This is administered fortnightly, the next due 10 April. In between treatments I take 10mg Prednisolone orally each day.
My first review is due 20 April and my immunologist has said that if sufficient stabilisation has not been achieved he will add Rituxan infusion.
I am trying to be subjective about how the treatment is going. I do not think there has been any marked deterioration in my vision since the beginning of this year which is excellent. Perhaps the treatment is stabilising the condition. Like Ann I am just very grateful for the opportunity to at least fight back against this filthy disease.
To date I am tolerating the treatment reasonably well. I tend to spend the first at least three days in bed and the nausea can be a bit nasty but the St Vincent's Team make sure that I have the best anti-nausea medication which definitely helps.
Keeping you all in my prayers.
Cheers, Matilda

Mike Bartolatz
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Re: Autoimmune Retinopathy AIR

Post by Mike Bartolatz » Sat Apr 04, 2015 12:55 pm

Thanks Matilda for the update. is Dr Foster aware of the elevated MS potential from your current doctor? you can contact him anytime now that you have seen him regarding this type of thing. I assume he gave you his email address etc.

hope you can get off steroids soon.
Mike
Mike Bartolatz
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Mike Bartolatz
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Re: Autoimmune Retinopathy AIR

Post by Mike Bartolatz » Mon Apr 06, 2015 4:04 pm

http://www.wjgnet.com/2219-2824/full/v4/i2/122.htm

this is on biological response modifying drugs to treat retinal vasculitis. recent discussion on Rituximab

Cosentyx, secukinumab is also discussed which blocks IL17A in uveitis and which is a major player in inflammatory disease processes

IL6 Blocking drugs also mentioned along with the TNF A blocking drugs and the IL1B blocking drugs
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GAL
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Re: Autoimmune Retinopathy AIR

Post by GAL » Tue Apr 07, 2015 5:24 pm

These are nasty eye disease(s) and it seems that each case is slightly different which I suppose matches the fact that we are all different? So far for me it is attacking my central vision and it seems for many posting here it attacks their peripheral vision.

Liz, very glad to see you posting and I hope that the rituximab infusions work for you. Will you be taking any other drugs with the infusions? Check out Ask Dr. Foster site, http://askcsf.yuku.com/forums/1/Ask-Dr- ... SM_FZPF-xE, and search for “Autoimmune Retinopathy”, to see how he describes his reasoning for the treatment he uses for AIR. He treats aggressively with rituximab and cyclophosphamide in an effort to kill the cells that produce antibodies, which in the case of AIR would be retinal and maybe also optic nerve autoantibodies. But please check out his site to ensure I am not misrepresenting his thoughts. Please keep us posted on how you are doing. Did your original treatment stabilize your vision for a period of time and then things restarted again?

Matilda, I am so glad that you are receiving care and treatment, though sorry that you have to experience the nausea and fatigue. The immunologist sounds quite knowledgeable. Terrific news that your rash has cleared and hope that your eyes and other autoimmune disease also follow suit and clear up too. Also hope that all goes well at your first review, please keep us all posted.

Like Matilda, I will be careful with self evaluating how treatment is going and leave that up to my doctor whom I see at the end of the month though I will certainly discuss with him any experiences that I feel are related in case they have some meaning or impact.

I hope we hear from Nancy and the others that have posted at this site as I am personally so thankful to share information and experiences with each of you in our journey with such a nasty, rare disease or even similar diseases.

Ann

Mike Bartolatz
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Re: Autoimmune Retinopathy AIR

Post by Mike Bartolatz » Wed Apr 08, 2015 1:11 pm

Ann,
thank you for your continued support at this site. Kevin corrected the posting issue you had so please continue to post often.

wish you the very best,
Mike
Mike Bartolatz
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GAL
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Re: Autoimmune Retinopathy AIR

Post by GAL » Thu Apr 09, 2015 12:16 pm

Mike, happy to support this site since you all do so much for the rest of us. Hopefully our postings all help support each other with information and encouragement.
Take care all.
Ann

Dport66
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Re: Autoimmune Retinopathy AIR

Post by Dport66 » Sun Jul 19, 2015 11:36 am

Hi everyone!

I'm a 25 yr old female that was just recently diagnosed with RP. I go next month for the ERG and more in depth testing. I've been doing research on this autoimmune disorder and was just wondering if this is something that I should ask my doctor about? Should I request a blood panel to be done? Right now I suffer mainly from night blindness,and tripping over things such as pets or wet floor signs. I'm the only one in my family that has these issues,and autoimmune disorders do run in the family (grandfather had Leukemia,mother and grandmother have Rhuematoid Arthritis). Thanks for any help! :)

-Brittany

Mike Bartolatz
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Re: Autoimmune Retinopathy AIR

Post by Mike Bartolatz » Thu Jul 23, 2015 10:49 am

http://askcsf.yuku.com/

we aren't doctors so I suggest you ask this question of DR Foster at his website above. Autoimmune retinopathy is very rare but there are blood tests for it as you have indicated in your post.

Wish you the very best,
Mike
Mike Bartolatz
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GAL
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Re: Autoimmune Retinopathy AIR

Post by GAL » Sat Jul 25, 2015 1:25 am

Hi Brittany,

Frustrating as I had a nice reply and must have hit wrong key twice!

Sorry about your diagnosis and your vision problems. Mike gave good advice to ask Dr. Foster. I am not a doctor but do have Autoimmune Retinopathy (AIR).

It is my understanding from my readings that there is a genetic test for RP, though I do not know of the accuracy of it. The differential diagnosis of these diseases is tricky it seems.

I tested positive for anti retinal antibodies and anti optic nerve antibodies but that alone does not mean one has AIR. I did seek 2nd opinion from Dr. Foster to ensure my diagnosis was correct before starting a treatment.

Best wishes in your journey.

Ann

Matilda
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Re: Autoimmune Retinopathy AIR

Post by Matilda » Tue Aug 18, 2015 9:39 am

Hello Everyone
It has been a long time since I have posted and it feels like a lifetime of experiences.
To end your suspense I had a review last week and the Professor is talking stabilisation!!!! Woohoo! Praise God! There can not be too many exclamation marks for this excellent news.
I am throwing caution to the wind and celebrating. We have too few opportunities to celebrate so given the news it is my turn to woohoo loudly.
From my last post my treatment has continued. Around April the IV steroids ceased but the oral steroids have continued together with the IV cyclophosphamide. In the last weeks the regime has changed. The oral steroids will reduce by 1mg daily per month until down to nil, so I was at 10mg now at 9mg for a month and then to 8mg and so on. In the last days I have commenced oral Mycophenolate Mofetil (Cellcept) and over the next 12 or so days will gradually increase the dose to 2000mg.
Prof McCluskey has reviewed recent electrophysiology test, scans, examination and from my feedback he can see that there has been no further deterioration and there was no deterioration at review in April and he is talking stabilisation.
At the review in April Prof Mc stated that this condition is not confined to ARRON (auto immune related retinopathy and optic nerve neuropathy) but is an auto immune disease of my whole immune system. It has no name, no treatment protocol and no prognosis. This was a blow even though I was aware that the disease was not confined to my eyes it was hard to process that the disease was now affecting my whole immune system. Prof Mc said that even though there was no treatment protocol, as the medication appeared to be having positive results they would continue with that regimen. Research is underway and perhaps within the next six months this particular disease may have a name.
When I saw him last week he stated that the research is continuing and they are hoping for some good results - as are we all.
I have developed Chemotherapy Induced Peripheral Neuropathy which is fortunately mild at this time. For the moment the team at St Vincent's is comfortable to monitor only and continue treatment. The steroids are also causing some weight gain and puffiness in hands, feet and face. I have the IV component of the treatment fortnightly and have asked for a break for one of these treatments as I am feeling very tired.
Prof Mc says there will be a time when I am no longer on medication. Wow! There is that exclamation mark again. He said that given the speed at which I was losing my sight that aggressive treatment was warranted as there was no doubt I was going blind. He is even saying there could be some improvement, something that we did not think was possible.
For now I have to make an appointment to review with immunologist and then in November have further electrophysiology and review with Prof Mc in January.
Life is remarkably good. Life certainly has a far more positive outlook for my family and me than it did at this time last year. I am aware that there is still a long way to go and the future is uncertain, given that the treatment itself carries serious and inherent risk, but we have already come so far it is time to celebrate this milestone.
Thank you for your support and I hope that my news may provide you with the encouragement to continue and not give up or give in even though at times the situation may appear hopeless. The future is not written and I do my best to live one day at a time attempting not to concern myself too much with the worries of tomorrow and enjoy today as much as possible.
I will keep you all in my prayers.
Cheers, Matilda

Pegofmar1
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Re: Autoimmune Retinopathy AIR

Post by Pegofmar1 » Tue Sep 01, 2015 2:19 pm

So happy for you and the huge improvement you are experiencing. Thanks for posting.

My husband had cataract surgery and it may have improved his vision just a little. His light sensitivity drives him crazy and the docs say that dry eyes causes that but no amount of drops has improved the light sensitivity. He wears two pair of sunglasses and reading glasses when we go places. Still can't drive with the vision field problems. He has given up on his retina specialist. I suggested he might have to start all over with testing, i.e., Casey Eye Institute in Oregon but insurance does not cover cost of blood pathology work. His eye problems came about during treatment for an aggressive cancerous tumor in his ankle in 2010. Eye changes are normal with treatment but his never reversed. He has been on IV steroids, oral steroids, methetrexate for almost two years, and no improvement.

I will read your post to him in hopes that he is motivated to try a new doctor.

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