Autoimmune Retinopathy AIR

Post here with questions about other autoimmune diseases or conditions.

Moderators: Mike Bartolatz, kwork

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

Re: Autoimmune Retinopathy AIR

Post by Matilda » Tue Nov 18, 2014 7:19 pm

Hey Ann, Mike and Joe
Joe I am so sorry that you are experiencing such difficulty and will keep you in my prayers that your current treatment regime will be a success for you.
Wow, Mike how can I thank you enough for your care and I am just amazed that you would go out of your way to contact Dr Foster on my behalf. Thank you from the bottom of my heart.
I will go to the MERSI site and send off an email in the first instance to try to set up an appointment and follow up with a phone call. It is 9:15am Wednesday morning here and 8:15pm Tuesday in Boston so the time difference makes contact a bit difficult. I can't believe I am even contemplating going to the other side of the world!
I believe this is a meant to be blessing and I intend to follow the path set out wherever it may lead and I pray with as much grace as possible.
Thank you all so much for your support and I will let you know outcomes. Blessings to you all.

Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Re: Autoimmune Retinopathy AIR

Post by Mike Bartolatz » Wed Nov 19, 2014 11:28 am

It isn't 'out of my way' to try to hook you up with competent care or to ask for guidance from a 'friend'. I wish I could meet up with you when you come to the States, but I am on the Pacific side of the USA. 2,800 miles from Boston. the Uveitis.org website has a list of hotels close to MERSI along with directions on how to get on the subway and get to both MERSI and local hotels from the Airport. One hotel is next door. Expensive though.

wish you a safe trip,
Mike
Mike Bartolatz
Moderator

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

Re: Autoimmune Retinopathy AIR

Post by Matilda » Mon Nov 24, 2014 7:00 am

Good Evening All
I am full of excitement and trepidation but mostly for the first time in a long time - hope. I leave Australia Monday 1 December and have an appointment to see Dr Foster Wednesday 3 December and start the journey back home 5 December.
This Forum and you very special and extraordinary people have been such a blessing in my life. Thank you so much.
Mike I pulled out an atlas to see where I am going and whilst it would be wonderful to meet you it is not going to happen this trip as I can appreciate how far one city is from the other.
Who knows where the journey may ultimately lead. I will let you know how this part turns out.
Blessings to you all.

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

Re: Autoimmune Retinopathy AIR

Post by GAL » Mon Nov 24, 2014 8:43 am

Hi All,
Matilda, I think you will be happy with him - he is one of the best doctors (maybe best) that I have and lately it has been a lot! My appointment is Dec 2 but we are not staying overnight. Between your jet lag and my uncertainty of how long my appointment goes - maybe we can meet somehow? Mike are you able to send her a message with my email so we can connect - if Matilda is interested (don't like to post my email publically)? It would be great to meet and share even if we only have 1/2 hour as this is a lonely disease! And I totally understand that bit about hope, it makes a huge difference in life.
Best wishes to all and to those in the US that celebrate - Happy Thanksgiving!
Ann

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

Re: Autoimmune Retinopathy AIR

Post by GAL » Mon Nov 24, 2014 10:12 am

Joe,
I hope this new treatment helps you out. I am keeping my fingers crossed for all of us.
Ann

Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Re: Autoimmune Retinopathy AIR

Post by Mike Bartolatz » Mon Nov 24, 2014 11:37 am

ann,
click on Matilda as author of her note and you can private message her through this site so that you can provide her with your phone and private information.

Matilda,

Hopefully DR Foster will be able to help you to get a plan together to stop the progression of your AIR. this is a VERY expensive thing for you to do and I wish there was a way to help you financially.

My best,
Mike
Mike Bartolatz
Moderator

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

Re: Autoimmune Retinopathy AIR

Post by Matilda » Tue Nov 25, 2014 7:51 am

Good Morning
Ann it would be wonderful if we could meet up somehow. I am due to arrive at Logan Airport at 2:30pm 2 December and will be going straight to the hotel which is apparently across the road from Dr Foster. I am not sure how this may work for you but if it could happen I would love to meet you. I am not very technical so don't know how to do the message thing or how I pick up your message.
You know Mike it is very expensive but I was so blessed as when I checked on our mortgage we are ahead enough in the payments to be able to redraw sufficient to cover this expense. I consider that an enormous blessing. How fortunate am I that I can afford to take advantage of this amazing opportunity!
I said to my husband the other night what happens if I go all that way and spend this money and then decide that the treatment is too aggressive or for whatever reason decide not to go through with the treatment. God love him, my husband said that at least we will know that we have done our very best and chased down every avenue possible and that is priceless. See how fortunate I am to have such a wonderful and supportive husband.
I had my mobility assessment today and am now the proud owner of a white cane. I saw the oncologist yesterday and Praise God continue to be cancer free.
Now if I can find some warm clothes to wear over there all will be good. In Perth today is was 35 degrees Celsius which is about 95 degrees Fahrenheit. I believe in Boston next week they may even be expecting snow, how strange to contemplate snow on such a hot day.
Joe I will continue to keep you in my prayers.
Cheers, Matilda

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

Re: Autoimmune Retinopathy AIR

Post by GAL » Wed Nov 26, 2014 3:30 pm

Matilda,
Meeting up would be great. Hopefully you got my email and will send another one later tonight with details of how we can maybe pull this off!
Thanks, Mike, for teaching us slow folks how to use the site:)
Take care all.
Ann

Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Re: Autoimmune Retinopathy AIR

Post by Mike Bartolatz » Wed Nov 26, 2014 4:01 pm

anything to help Ann.

have a wonderful thanksgiving.
Mike
Mike Bartolatz
Moderator

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

Re: Autoimmune Retinopathy AIR

Post by Matilda » Fri Dec 12, 2014 7:58 am

Hello All
A quick update on my roller coaster ride. Ann and I managed to meet up and spent some precious time together.
Dr Foster and his fellow Dr Swan were exceptional. From the moment I walked into the office I felt as though these people genuinely cared. Whilst advising that there are no guarantees Dr Foster recommended starting treatment as soon as possible with a view to halting the progression of the disease.
I am flying off to Sydney next week to see a Dr McCluskey a colleague of Dr Foster. The only reason I was able to get an appointment so quickly with Dr McCluskey is because Dr Foster intervened. I am hoping that Dr McCluskey will be able to make arrangements or commence treatment as per Dr Foster's protocol. I just hope that Dr McCluskey is a decent person and that he will treat me with as much respect as Dr Foster and that he will agree to commencing the treatment.
My experience up to this point with the doctors in Australia is that they have only wanted to track deterioration. So I feel very nervous about this upcoming appointment.
You have a wonderful country even though I was only there for a very short time it was an absolute pleasure to meet so many wonderful people.
I am doing my best to stay in the day, to count my many blessings and keep my faith.
Thank you to you all for your support and care.
Hoping you are all having the best possible day.
Cheers, Matilda

Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Re: Autoimmune Retinopathy AIR

Post by Mike Bartolatz » Fri Dec 12, 2014 12:59 pm

Matilda,
thank you so much for your very kind words. Yes MERSI and DR Foster are wonderful but they are an exception to the norm throughout the World. He does care about all of his patients and he will go outside the box to try to get them to remission if at all possible from this horrible disease process that you have going on. His wife, Frances Foster had uveitis related to Juvenile Rheumatoid Arthritis. she became a patient of his after being only treated with corticosteroids which caused damage to one of her eyes. He started Immunomodulation and it saved what vision she had remaining in her good eye. Today they are a picture perfect couple working very hard through their online support of all with Ocular Inflammatory Disease processes. DR Foster has won prestigious awards for his compassion and getting the latest research into practice and he is on the Who's Who list of ophthalmologists here In the USA.

I am part of the online support network at http://www.uveitis.org and have worked with him since 1999.

wishing you speedy treatment through MODERN medicine,
Mike Bartolatz
Mike Bartolatz
Moderator

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

Re: Autoimmune Retinopathy AIR

Post by GAL » Sat Dec 13, 2014 2:54 pm

Hi All,

It was so wonderful to meet Matilda, absolutely amazing that we managed to pull it off! Our world is truly small and I hope our paths cross again someday. It would be wonderful to meet everyone at this site someday.

Not much to report so far, I am doing well on a low dose of Cyclophosphamide and have no side effects. Hoping that this is able to stop the progression or at least slow things down while awaiting the hopeful approval of Rituxan. This fall for the first time since the start of this journey I feel confident that I am pursing the right course and treasure all of you for making it not a lonely journey through sharing information and support.

I will keep everyone in my thoughts and prayers. Matilda - safe travels and will be keeping fingers crossed for it all to work out in Sydney.

Best always,
Ann

Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Re: Autoimmune Retinopathy AIR

Post by Mike Bartolatz » Sun Dec 14, 2014 2:35 pm

Ann,
I hope the Rituxan is approved for you soon if that is what CSF wants you on. you are under great care.

wish you the very best my friend,
Mike
Mike Bartolatz
Moderator

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

Re: Autoimmune Retinopathy AIR

Post by Matilda » Tue Dec 23, 2014 10:22 am

Hi All
I returned from America with a head cold that I have been unable to shake despite two courses of antibiotics.
I am now back at home with my wonderful husband and son after an appointment with the doctor in Sydney. He said that Dr Foster is at one end of the spectrum where doctors believe this disease should be aggressively treated. He said that he could introduce me to doctors who are just as passionate that no treatment is warranted.
In short he said that no one knows with an absolute certainty what treatment protocol works and the experts in the field cannot agree.
Having said that he feels that cyclophosphamide and he also suggested steroids may be warranted in my case. He will not commence any treatment until I have seen an immunologist to ensure there are no other auto immune diseases or issues involved. I agree that seeing an immunologist is the way to go but am angry as I asked my specialist to send me to an immunologist a year ago and this was refused saying that an immunologist does not know about eyes! So although after my research I am hesitant about steroids at least this doctor is looking at the cyclophosphamide BUT I now have to wait again and travel back across to Sydney 12/1/14 to see the immunologist.
I wish I was able to stay with Dr Foster and have the treatment with him that he has outlined and recommended. I have to say that throughout this whole time the doctor in which I have the most confidence is Dr Foster.
I was very upset after seeing the doctor in Sydney and felt really low. My dear friend Ann sent me an encouraging email and after some time and perspective I have picked myself up and dusted myself off and will carry on AND count my blessings AND try to stay in the day.
To each of you I wish you a Merry Christmas and for us all amazing things in this journey of life in 2015.

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

Re: Autoimmune Retinopathy AIR

Post by GAL » Sun Mar 08, 2015 11:23 am

Hi All,

Thought I would update everyone. After a long battle I received 8 weekly infusions of Rituxan with few issues except for slight fatigue. Thankfully I received these in my hometown as travel to Boston this past two months weekly would have been impossible on a weekly basis! The cyclophosphamide dosage has changed with CBC results and I hope that this is normal to have to start and stop and not a sign of intolerance building up preventing further usage of the drug. The infusions will now continue monthly as clinical evaluations at the end of those first 8 infusions show improvement in my mfERG. The antibody results are still not in however I expect that they will reflect the same.

So I am cautiously optimistic that I am at the start of a long road to remission but aware that there will likely be many ups and downs and still the possibility that it doesn’t work. However, I am grateful for the opportunity to be given the chance to try to save my vision and to add to the knowledge base that may help others down the road. I hope that my experience helps to give someone out there the courage and determination to help them find their path.

Ann

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