In the back of my mind, I have a little hope that stem cells could repair my left eye. Has anybody here done any research on this?
Stem cells for vision loss - someday ?? - PMRGCAuk
Stem cells for vision loss - someday ??
Written by
missmylefteye
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PMRproAmbassador
It depends on the cause. There are techniques I believe that could repair retinal damage by stem cells being introduced into the eye and then specialising as retinal cells.
But in GCA there are no techniques that can repair the damage - it isn't the eye per se that is damaged, it is the optic nerve which has been damaged so badly that it dies and cannot transport the electrical signals to the brain. There are not yet techniques to remove damaged sections of nerve as you can with blood vessels. Maybe there will be in the future.
Yeah, getting past my pulsating pain, nerve buzzing, & inability to do much exercise probably would improve my life more anyway. May need 80mg of pred. This is a crazy rollercoaster.
Yeah, my left optic nerve is pale pink now, atrophied.
DorsetLadyPMRGCAuk volunteer
Hi mmle,
As a fellow one-eyed wizard, I understand your search for a remedy, but unfortunately, as PMRpro says in the case of GCA it's not the actual eye that is damaged, it's the optic nerve behind it that's beyond repair.
Four and a half years in, I can say that being mono-sighted has not had such a devastating effect on my life as I expected in the first few months. True it is very frustrating at times when I want to do close work - needlework, craftwork etc, but I was never a Michaelangelo before, so does it matter I'm not now!
I can still drive (although I get tired more quickly due to extra concentration), I can still appreciate a beautiful sunrise or sunset, I can still read or play with my younger grandchildren, email, facebook my older grandchildren, fly around the world (done once, going again next year).
My arthritis is more problematic than my one-sightedness.
I enjoy my life, and intend to continue doing so as long as I can. I can't get my right eye back, so why waste time worrying about it!
I appreciate you may be younger than me, and not as 'accepting' at what life has thrown at you, but don't ruin today by worrying about what 'might be' tomorrow.
I agree, I am still in so much pain & compromised functionality that that is more important too me. Pretty sure I have trigeminal pain, too. I see the neuro-opthamaligist tomorrow, but he didn't help me much a month ago .. I will resort to begging him to send me to a neurologist. Thinking about bringing kneepads. I have been blown off by neurologists & rheumatologists. The US sucks for healthcare. Anyway, way off topic here.. just wondering about optic nerve regeneration. I'm 57, and I was an adjunct professor for a bit. I had the goal of getting a PhD, tough to right now. Big cataract in my good eye, maybe if I can get that fixed successfully...too scary right now. 😃
Yes I know. Had mine done about 18 months in - and very scary to think about. But sometimes you just have to bite the bullet! But maybe not at the moment for you, too many other things to think about.
I wish you well.
How did it go?
Brilliant. You don't realise beforehand how dull and misty everything has become.
Everything seems much lighter, and the colours are fantastic again!
Op only takes about 20mins, and although a little weird, no pain!
Sounds great. What was your vision before you got it done? Opthamaligist says I should probably wait till 20-40,20-50. How much pred were you on? Does that matter? Thx
Don't know exact readings. All I know is that optician said she couldn't increase the strength of the prescription, and I was about coming to the stage where I wouldn't pass the UK driving sight test.
Surgeon said he would prefer to wait a bit longer, but made an exception - a. no sight in other eye, and b. going to New Zealand in near future (7 weeks) and c. I nagged a lot! Was on 6mg still the time, but they were particularly bothered about that. Obviously lower is better, but others have had it done on higher doses.
Hi, I'm in the U.S. As well and have not had any trouble with insurance. I can go to the doctors I want with one exception that demanded a referral. (The doc not the insurance). My complaint was the wait, but I've learned here that one month is nothing compared to others experiences. Check on your insurance, you may be able to go to whoever you want to. Each plan is different. Good luck!
You are lucky then. I was already disabled so could get medicaid, many private specialists refuse to see me, there are shortages of ones I've needed, and they are in large groups, so I can't see anyone in these groups. Not many individual practices I'm town.
Can I ask what state you are in? I am in Colorado.
I'm from CT and still working. I have a high deductable insurance which has been tough getting used to financially but I do have some freedom to see who I need to. I've chosen to drive 1 1/2 hours to my rhuemetologist because the more local one didn't seem to understand PMR and I was worried that I wouldn't get a "fresh look" with another doctor in the same practice.
There's a spot on top in the drop down by your name where you can find people who live near you. It might be helpful.
Good luck and keep reading and posting here. It's been a life saver for me.
Me too. I love this site. My ENT told me yesterday that there is a shortage of rheumatologists all over the country right now, Chicago, Boston etc. My esr is normal, and a long time ago they diagnosed me with fibromyalgia & have no interest in helping me. In July I got a few minutes with a rheumy, I begged him to help me, I begged him to let me try methaltrexate. He refused. I feel like I could have saved my left eye if he had helped me.
Never mind all over the country - all over the world is more like it!
If it helps (I don't imagine it will but...) methotrexate almost certainly wouldn't have made any difference. The only simple answer is corticosteroids. Tocilizumab may help get of the pred - but it is unlikely it will be used alone for some time. Wouldn't be ethical.
Thx, pmrpro. I guess that makes me feel a little better that my idea to try methaltrexate may not have helped avoid this anyway. I had become a pred seeking machine in the last year, kept asking for it for anything I had going on...
Is your ESR high?
I have "classic" PMR symptoms. My SED and CRP levels reflect the inflammation I feel, at least somewhat. I should add that they went up with a sprained ankle and a cold. I'm doing ok with the prednisone so don't want to add anything else. I seem to be sensitive to it so am trying to be more careful with reducing dosage. It's hard to pace myself at times.
My current goal is to regain some muscles and lose some weight. I'm trying to be patient as its slow going but at least I'm making progress now. Have a great weekend.
You too. By the way, I am originally from NJ 🐹
