Autoimmune Retinopathy AIR

[Mike Bartolatz]

Well I was told on wednesday that I had a Neuro opthalmolgical exam scheduled for this morning only to have a friend take time off work to drive me 30 miles to Seattle to find out I wasn't in the 'computer' and to go home.
to say the least I am disgusted with the Veteran's Administration medical systm right now.

so I'll update when I finally learn something,
life sucks and then there are the bad days,
Mike

[lizj56]

Hi, Well I was told I might be a candidate for the ritux trial but that will be determined by the doctors and I will not know until after the 4th of July. If I am selected I will need to go to the NIH and be evaluated. Was wondering what the evaluation looks like and how many visits are required. Also does one take prednisone or any other oral autoimmune pills while going through the trial. Does it hurt afterwards and if so how long? Any info would be appreciated. Thanks Liz

[lizj56]

Hi Mike .. that really does suck.. you don't deserve that and hope you get in quickly again.. VA system is not so great sometimes.. keep us updated as we care... Liz..

[Mike Bartolatz]

Liz, you would have to go to the Trial list at the national insitute of health to find out what drugs will be given in addition ot the rituxan. there is also the double blind placebo issue with any trial. some get the drug and others don't. I would assume no steroids would be given as the baseline is usually to see if the drug does any better than steroids or placebo.

I'm really down right now. I've been going through so many unexplained symptoms for so many years that I had my hopes up that someone would finally figure out WHY I am having all of this happen. the phenomenon is most often associated with my form of uveitis, pars planitis when the underlying cause is from MS. this would explain ALL of my issues along with my PP and optic neuritis event. this would in turn allow one of the ABC drugs to be used which might help stop my symptoms instead of mask them.

Thanks for caring about me Liz, sometimes I need support too as my family doesn't want to hear about 'it'.

wishing you the very best,
Mike

who is running the trial, DR Smith or Dr Nussenblatt at NEI? msb

[lizj56]

Hi Mike, I feel bad the family does not want to hear about your condition but maybe it is just too painful for them to hear about it.? I remember when I first learned I had something serious how everyone kept telling me it would be okay but all I could hear in my head is I would be going blind and how many years do I have of good sight and how much I would miss seeing what I always took for granted. I was diagnosed at first with retinitis pigmentosa simplex and still not sure if I have it or not but the reality is you end up being strong for the family ironically and holding it all inside and it eats at you so you frantically search for answers. I think that is part of why we join groups to learn but also ride the storm together. It is like grieving and at some point it has to come out or you end up really breaking down. There has a been a few times I really just broke down and somehow I felt better afterwards to keep on searching and reaching out. You have really developed a great network here and I hope in your case you can obtain the ABC drug you are needing. Your connection with the doctors is really impressive and by the way the doctor is Dr Nussenblatt according to Dr. Heckenlively. Don't like the idea of possibly getting a placebo since I have been at least stabalizing with the meds I am currently on and for some reason seem to be tolerating them so far.. have blood tests monthly for my kidneys and white blood counts. I wish they could guarantee that you would not get the placebo as I really was losing sight fast before I started taking the pills they have me on now... maybe I should just stay with what I have... nothing is easy is it.. But oddly enough because of what I'm going through I think I look at life differently and I think I'm somehow better because of it although I really don't want to lose my sight I have gained insight of who I am and more of what I'm all about.. I just simply appreciate more now and don't take anything for granted. I love more deeply, have a kind of peace of mind I never have had before despite the storms all around me I have an inner peace that was lacking before. Okay I'm rambling.. must be the prednisone.. I just think somehow things will end up being okay no matter what.. you can't change anything by worrying and so why not appreciate and enjoy the here and now.. okay enough.. it seems you have pretty much figured out what your problem is and it seems it is just a matter of getting what you need.. keep me posted as to the progress you make.. play the song Bad Day by Daniel Powter.. Music helps me.. Wishing you the best, Liz

[Mike Bartolatz]

Liz,
If the drugs you are currently taking quit working, then consider the trial. the placebo part of the equation would be what I would get with my luck if you know what I mean

I was told I would be blind in less than a year back in 1974 so I truly understand what you have felt in the past. my goal here is to provide information on treatment so that others won't have to hear the 'you will be blind' comment from anyone. the tailspin that one undergoes is terrible. my brother went blind, my dad went blind, I don't want that to happen to me or anyone else if I can help prevent it. my brother's case was diabetic retinopathy and he died when he was 52 from complications to diabetes. my dad had a stroke at 65. I'm 60 so those milestone years have been difficult to approach without apprehension. the odd thing is that I was told I would be go blind at 23 and so far this hasn't happened... many years before they went blind.

TAke care,
Mike

[BHM]

Liz,

There is no placebo in the Rituxan study. I can give you the email address for the study nurse and maybe you can also give her some information ahead of time and say that you really hope they will accept you. I'll be there this week if you want me to mention that your doctor will be contacting them. Here was my study schedule briefly:

Baseline at entry of protocol which includes physical exam, lab work, fundus pictures, autofluorescence, fluoroscein angiography, OCT, ERG, HVF, Goldman VF. There is a possibility that you can get the Rituxan at that appointment. If you do, you get the infusion and then

2 wks later another infusion and physical exam.

6 wks - physical, dilated eye exam, some pictures

3 month- same as baseline

6 month- if you've improved or stayed basically the same you're eligible for anothe round of Rituxan.

The study goes for 18 months. Months 9, 12 and 18 are much of the same types of stuff..pictures, OCT, etc.

I had absolutely zero reaction or side effects from the Rituxan. I know many people on it because I also have an autoimmune disease (Sjogren's syndrome) and have friends who are also on the drug. No one has had any side effects except for one who was tired after the infusion. There is no pain with the infusion at all.

Liz, NIH is the most fabulous place I have ever been. They truly care about their patients and make you feel important. While Nussenblatt is head of Oph Immunology, it will be Dr. Sen (pronounced Shen) that you will be seeing.

If you want my study nurse's email why don't you email me at DWBHM1@aol.com. You can tell her I gave it to you.

Bobi

I just found the protocol on-line.
http://clinicalstudies.info.nih.gov/cgi ... etinopathy

[BHM]

Mike, this is just terrible that your appointment was not in the system after getting someone to take you all that way. This whole vision thing is so unnerving as well as depressing. A person always is so apprehensive about an upcoming appointment, of this magnitude, yet it's welcome because you want to hear good news or at least get some solid news about what's causing it. My family is like yours. No one wants to hear anything about it. When I come out of an appointment my husband never even asks what they said. I think because I still see that it's not an issue to them. I don't know. It's just a guess.

Please let us know when your next appointment is. Like Liz said, we care. We're in it together and understand what the loss of vision means.

Bobi

[BHM]

Liz, I spoke too quickly when I said you'd be seeing Dr. Sen and not Dr. Nussenblatt. I should have said I think you probably would be seeing Sen. In any case, whomever you see, they are all good. Also, I took 20 mg of prednisone daily for the first two weeks during the infusion time. That was it. But, maybe your situation would be different. I only know in my case that's what I took.


Bobi

[lizj56]

Hi Bobi, Thanks so much for the information. Is really good to know there is no placebo as that gives me a much better feeling for the trial. Would love not being on prednisone if that would be eventually be the case. It is really hard stuff to be on. I will contact the nurse you gave me the email of to ask a few questions I have and really appreciate the help. Glad to hear the injection is painless and I'm guessing it is painless still the next day I hope. I will be hearing from Dr. Heckenlively's office after the 4th of July weekend so will let you know the status when I hear. I was leery of the placebo and to hear they do not do that is a very good thing. I guess they give you injections in both eyes and not just one. Glad to hear nobody has had any side effects except the one which seemed quite mild. Thanks so much for the information. If you want to mention to the study nurse I'm trying to get in I'm thinking it would only help. I'm sure the two doctors will be going over all the tests I have already had which will determine if I can be part of it also. Dr. Heckenlively also talked of a drug from Allergan they are going to do some clinical studies on but recommended I wait for the first rounds to be done on others for some reason. Mike I am so glad you have started this site. It is the only one where I have really received any really good information. Best to all of you always... Liz

[BHM]

Liz, that was my email address that I gave you (not the study nurse's) so you could email me and I'd give you her email. I didn't want to post it on the list. So, should you decide to contact her, just email me. I will mention to her that she might be hearing from you. Also, I didn't mean to imply that Rituxan has no side effects. It does. It's just that I, or anyone I know who is on it, have not had any. They will go over all the side effects that might occur. Let's face it, even aspirin has side effects.

And, Mike, I hope you're feeling a bit better after your very disappointing experience recently.

Bobi

[Mike Bartolatz]

i've calmed down a bit since friday's disappointing event. still having balance problems though walking into stuff, stumbling and beint a bit disoriented. my vision has improved but things are still a bit fuzzy out of my left eye and things appear darker out of my left eye. still headache and stiff neck but that's been like a normal occurance for several weeks. leg strenght is improviing and I was able to mow my lawn yesterday without overheating.

that's good news that the rituxan trail doesn't have the placebo and that there are minimal side effects. I sure hope it works!

thanks for your support too.

Take care,
Mike

[BHM]

Hi Bobi, I guess they give you injections in both eyes and not just one. Glad to hear nobody has had any side effects except the one which seemed quite mild. Thanks so much for the information. If you want to mention

Liz, I'm confused. Are you talking about Rituxan? Rituxan is an IV infusion. That is the drug I am talking about. There are no injections into eyes. The infusion takes anywhere from 2-5 hours. The first one is the longest because they watch you to make sure you don't get any side effects (like hives, etc.) so they do it slowly.

Mike, I'm glad to hear you're feeling a bit better after what happened. It surely can take a lot out of you.

Bobi

[lizj56]

Hi Bobi, I guess I was confused and did not realize this was an infusion which is exactly what I was told.. I guess the confusion came in when I was told in the beginning (my first visit with Dr. Heckenlively) that I would either be put on oral meds, an eye injection or nothing. So it was in my head that this new infusion was an injection into the eye and why I asked of the pain... must of thought I was a big baby.. lol I'm glad it is an infusion instead of an eye injection to be honest.. have had a couple of infusions so now I am more clear.. thanks for the helping me clear my misconception up.. But I do know I am talking of the same clincal trial as you.. And I will email you to get the name of the study nurse.. you have been most helpful and I'm really glad to hear it is not an injection in the eye... Thanks, Liz

[Mike Bartolatz]

over the past 37 years with pars planitis, I've had many steroid injections both to tissue surrounding and behind the eye as well as one into one of my eyes. they aren't fun but sound allot worse than reality if properly done. holding still while a syringe comes at you is a bit difficult the first time but after that it really isn't that bad.

wish you the best,
Mike