First Post, DME sufferer with approx. 40 i... - Macular Society

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First Post, DME sufferer with approx. 40 injections

tess4344 profile image

Diagnosed approx. 4 years ago, diabetic for the last 30 years. Had avastin injections in left eye for a while, then both eyes were treated and the right eye cleared completely after about 12 injections but left eye still has leakage. Ophthalmologist recently switched to Eylea so I think I'm on my 6th injection which is given monthly.

Really didn't have any complications with Avastin other than some pain and discomfort which usually disappeared after a good night's sleep. Have had many haemorrhages, never know when a blood vessel will be ruptured. There was one time where the ointment given after the procedure did give me extreme pain that I couldn't shake until I applied hot compresses over my left eye and then the ointment started oozing out relieving my pain so no more ointment for me.

I found the Eylea injections more painful and then 2 months ago I experienced the worst pain ever after the freezing wore off. I did need painkillers but did not really help for approx, 24 hrs. and then my vision was blurry for another 3 or 4 days. Reported this to my ophthalmologist and he stopped using Iodine and switched to Chloro something, I forget. Anyhow, night and day difference, last injection was basically pain free, I was able to do normal things that day for the first time in a long time. Vision in right eye is 20/20 and 20/30 in left eye.

Things are definitely improving, read a book by Jason Fung called "The Diabetes Code" and that has helped me lower my insulin resistance thus also helping my vision.

17 Replies

Hi tess4344, glad the chlorhexidine and inj are working for you. Best wishes going forward.

tess4344 profile image
tess4344 in reply to eyesright

Thank-You eyesright, wasn't 100% sure what disinfectant was being applied as my optho mentioned it in passing but he does want a progress report next time I go in. He said that some people don't handle the iodine well and I am one of them.

Welcome to the site Tess. You wil find that there are some wonderful people on here. Glad things are improving for you

tess4344 profile image
tess4344 in reply to Patjo

Thanks Patjo, after reading many posts, I agree that there are great folks here.

Hi tess

So glad for you that things are improving even if, at times, it seems to be a never-ending journey and it may well be so for the foreseeable future.

I agree with you that reading up on our individual conditions can be helpful. I am sure you have learnt a great deal in that way, as I have done. As long as we guard ourselves against filling our heads with imaginations and jumping to conclusions, which is easily done, it can be very useful and reassuring.

Hope your progress continues.

tess4344 profile image
tess4344 in reply to

Thank-You ayayay, one must take guard against misinformation since there is no shortage of that on the internet. As a child, I watched helplessly as my grandmother lost her sight with DME and wondered why nobody could help her. She didn't realize she was diabetic till well into her 60's. If only this treatment had been available back then, she could possibly have avoided so much anguish.

in reply to tess4344

That is so sad, tess. And yes, you are right. Things back then were so much more difficult. People were just left with to cope the best way they could. There is still a long way to go before the NHS will be perfect, if that ever happens, but still, we are fortunate to have what we have. At least we have hope.

Best wishes, tess, and thank you for sharing this with me.

tess4344 profile image
tess4344 in reply to

You're welcome ayayay, this site is a great tool for members to compare treatment options and necessary information for their individual conditions.

Thank-You for your responses.

That’s great news! Happy for you!

tess4344 profile image
tess4344 in reply to arwmd

Thanks arwmd.

Hello!

I, too, have had injections from Eylea, Avastin and Lucentis (not sure the spelling here). Had been having Eylea for several years, and experienced an "irritation" after a recent injection, and then a devastating infection after the next one, that destroyed my sight. That was August this year (2018), and a cataract got stimulated after the steroids prescribed to clear the infection. NOW I'm waiting for the cataract surgery (whenever they can fit me in...) and THEN a second eye surgery to clear out remaining debris from the infection. THEN and only then will they have some idea if I will gain some or all of my sight. Lesson here: rinse, rinse, rinse following an injection. I have NO idea if they can tell if the Eylea caused the infection (it CAN, according to their disclaimers) or if it was lack of sufficient rinsing. Also, fyi to everyone: the drops given to you following an injection (priced at $50!) are the SAME as the eye drops you can buy over-the-counter (in the USA). Nothing more. They both work the same magic, easing discomfort from an injection. Good luck with your continuing injections. I will have to continue some, too, as needed.

tess4344 profile image
tess4344 in reply to AMD6yr

Hello AMD6yr, sorry to hear about your devastating infection and subsequent complications. I was told during my first consult not to open my affected eye during a shower for 4 days after the injection for fear of infection.

I have been taking 6000 up to 12000 milligrams of vitamin C daily along with many other supplements for the last 10 years. Vitamin C is also known for its antihistamine, antitoxin, antibiotic and antiviral properties as per Andrew Saul, Linus Pauling and many other experts. I swear by it and do not usually get colds or infections but if I do, I increase the dosage and they are short lived.

Hoping that your second surgery goes well and your sight is restored AMD6yr.

God Bless and Take Care.

AMD6yr profile image
AMD6yr in reply to AMD6yr

Hello again!

My Mom worked with Dr. Pauling in Palo Alto in the 60's. Super nice guy in addition to being SMART! I will consider a Vit C supplement (water soluble so you can't get too much!) and I "do" lots of citrus. Plus the Preservision Areds pills and Lutein AND Flax and D (my old bod doesn't make enough, even when outside a lot.) Hadn't been told to keep my eye "dry"for four days after an injection, but hey, can't hurt, so good idea. Will letcha know what happens after I get the cataract and second surgery --- could be next YEAR before that happens, but hoping for sooner!!! Any delay from now on just increases the chances of NOT regaining full sight. You'll probably hear a loud "WHOOPIE" when/if that happens!

tess4344 profile image
tess4344 in reply to AMD6yr

Water soluble is correct AMD6yr but once you reach bowel tolerance (loose stools), you know the upper limit has been reached and maybe need to cut back that day.

If one has a bad cold, flu, infection, the body needs more Vitamin C and can tolerate higher levels.

I did have a bad cold a while back so I increased the dosages considerably and was able to recover within a day or two.

Vitamin C is usually fast acting but also diminishes quickly so try to spread it out during the day with meals or buffer it with water.

Hope your caregivers don't delay giving you the care that is required.

Do please let us know about your progress and looking forward to a "WHOOPIE" headline from you.

Catseyes235 profile image
Catseyes235 in reply to AMD6yr

RE water getting near your eyes I always wash my hair before treatment so no risks of contamination after. Tap water is great but needs to be boiled and sterile fir washing round your eyes.as you shouldn't keep the hypomellise drops long once opened I just use those to wipe around my eye. It takes about 5 days fir the site to heal so baths or strip wash at the sink until after day 5 .

tess4344 profile image
tess4344 in reply to Catseyes235

Agreed Catseyes, never knew how much bacteria could be in tap water until it was pointed out to me, most of the time it's harmless but a recently injected eye is definitely vulnerable.

Great idea using hypromellose drops to clean around eye - I hadn't thought of that!

Fyi - hylotear drops can be used for 6 months after opening.

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