Retinopathy

[r1tom]

hi all, just wandered if there was anyone else on here who has this?
I am 29 and type 1, ive been having treatment for retinopathy for a few years now, lots of laser and avastin injections, never met anyone else in the same situation, Tom

 

[janabelle]

HI,
I'm so sorry to hear you're suffering with retinopathy at such a young age. I haven't got diabetes related retinopathy,but a different condition also related to the retina.
I've been type-1 for nearly 21 years, but losing my sight to a Retinitis Pigmentosa, which is completely unrelated to my diabetes. I was diagnosed with RP 10 years ago, inherited from my mother, and my kids have 50/50 chance of having it too.My sight has deteriorated more over the past few months and I now use a white symbol cane when I need it in certain situations such as dimly lit busy places. Does your condition also prevent you seeing in dim light?
I've never heard of the treatment you mentioned, but am interested in anything that could halt the progression. I live in hope of stem cell therapy for a cure, and hopefully we'll both get lucky then.
Jus

 

[kegstore]

Tom, bad luck on the retinopathy, and laser's no fun either eh? I started receiving laser treatment aged 31 (10 years ago), but I'm happy to report that it was enough to kick me in the behind just when I needed it. I had barely tolerated diabetes for years, and despite some quite amazing (good) blood numbers every time I visited clinic, the damage was already done. I've had about 6,000 hits on each retina, but none for a while and they appear to have stabilised, finally.

Couple of things to note: Firstly I always say this in response to any post involving a microvascular complication - good blood pressure control is vital in minimising further damage, my team reckon it's more important than blood sugar control once deterioration has started, although clearly don't let your bg levels slip! Secondly, the eyes seem to take much longer to settle down than other organs/functions, certainly did with me and the others I speak to.

I've been taking Vitamin C (1000mg) once a day for the last 6 months, there's been some interesting research and results on it's efficacy in assisting microvascular repair. And I haven't had a cold either!

 

[goji]

Hi Tom

I'm early 30s and Type 1 and just found out last week that I have retinopathy in one eye. I'm in shock really as I use to have worse control and no retinopathy and now my control is tight and I get retinopathy!!!

I'm curious to know how bad retinopathy has to be before they start lasering? Apparently one eye is perfect (R0) but the other eye is R2.

Thanks
Goji

 

[cugila]

Here is a link to a website all about Diabetic Retinopathy and it's treatments.
http://medweb.bham.ac.uk/easdec/laserdi ... thy.html#i

Here is a further link which explains the grading system.
http://medweb.bham.ac.uk/easdec/gradingretinopathy.htm

There may be people on here who have had some experience of this and will be able to answer your question as to how bad it has to be before treatment is needed.

 

[phoenix]

When I was at the opthamologists for a checkup last week, I was talking with a man who was having avastin for maculopathy. To me it sounded rather nasty(but then I have problems even putting drops in my eyes) but he said it was working well and not too uncomfortable.
There is some info on it on the Birmingham site referenced by Ken. It's not yet licensed for this use in the UK so it may depend where you are. (and Nice has just refused to licence it as a cancer drug)They have however recently licenced lucentis which works in a similar way ...and costs more than Avastin!
http://www.guardian.co.uk/society/2008/aug/27/nhs.health


Janabelle, I also found that it is being trialled for use in retinitis pigmentosa
http://www.euretina.org/site/euretina-brief/default.asp?id=10

Sorry Tom, this doesn't really answer your search for other people with similar experiences. Though your experience may help other people. I think most people with diabetes are concerned about retinopathy, lots like Goji are told they have some background retinopathy but often very little info about it .

 

[r1tom]

i have been having avastin injections done at my consultants private clinic, i know it isnt available on the nhs and has cost me about 18 grand so far! it works wonders though, seems to completely stall the retinopathy process for a while, ive had that much laser done though that my eyes are extreemly sensitive to light and i cant see at all in the dark and i get bleeding after the slightest knock or strain :roll:

 

[janabelle]

Many thanks for the link Pheonix-knew nothing about it, I'll do some more digging.
It's shocking you're having to pay so much for your treatment Tom, hopefully it will be made available on the NHS very soon.
all the best
Jus

 

[bonerp]

Hi I've had diabetes for around 32 yrs and retinopathy for around 10/11 yrs, and had laser in all that time.
I still get bleeds and although I'm now on a pump and got hb1a's down to 7 I still get them. Lately seem fairly regularly too. I've had so much laser that there isn't much room left for much more so they are reluctant to do it for small bleeds.
Last thurs I had one, had appointment on fri and they did nothing, then yesterday had a biggy. Its a PITA cos will take over a week to clear now.
Have also been told no more gym/weights. Ever.
Pretty PO at the moment.

Heres some info i found on the web - treat with care. Although I have ready the bits around Vit E, bilberry and Ginko around a few places. I am trying Bilberry and Vit E. Interesting on 1000 Vit C - makes me feel terrible whenever I've tried it.
******
Home Remedies for retinopathy #1: Vitamin A and carotenoid are needed to keep healthy eyes and to improve night vision.

Home Remedies for retinopathy #1: Take Ginkgo Biloba to increase the delivery of oxygen and nutrients to the eye and to clear toxins. It is very helpful in retinopathy.

Home Remedies for retinopathy #1: Bilberry strengthens and protects veins and blood vessels, protects the retina, reduces pressure in glaucoma and damage cause by diabetic retinopathy.

Home Remedies for retinopathy #1: Grape seed extract contains procyanidins which strengthens retinal capillaries and prevents clots or bleeding, provides vital nutrients, increases night vision and slows eye ageing. It also prevents and treats retinopathy and arteriosclerosis in the eye.

Home Remedies for retinopathy #1: Eat spinach and take Lutein or spinach extract. They contain carotenoid needed for retina and eye tissue and sometimes reverses many eye conditions.

Home Remedies for retinopathy #1: We recommend that you check Diabetes for important herbs and nutrients needed for diabetes and to prevent diabetic retinopathy.
***
Interesting about Avastin - but whats the point if you still get bleeds??? Isn't this the whole problem with retinopathy???

I've had over 15,000 zaps in each eye. i'm guessing next step may well be a vitrectomy....gulp.

Paul