Drusen, dry AMD and AREDS2: I've been... - Macular Society

Macular Society
3,144 members1,545 posts

Drusen, dry AMD and AREDS2

ElviraKate
ElviraKate
23 Replies

I've been reading these pages for weeks now, but this is the first time I've posted a question. I was referred to Moorfields by my optician who was worried about 'hard drusen' in both eyes and double vision in one. I have been myopic since childhood and now have incipient cataracts which so far give glare but no colour change, and which in one eye is responsible for the double vision. The cataract clinic at Moorfields does not want to operate yet and sent me to the refraction clinic to get an improved reading glasses prescription. The retina clinic at Moorfields said there was no damage yet from the dry AMD but I should take AREDS2. So I ought to be ok with all that but of course I am terrified - I'm 66 and an artist and writer.

My question is: what are your experiences with AREDS2 supplements? I have another retina clinic appointment in November - by then I will have been taking the supplements (Bausch&Lomb Preservision) for 3 months. Do you think there is likely to be an improvement, or is stability the best I can hope for?

There are some wonderful people on this site and I find you genuinely inspiring. I hope I can manage any eventual sight impairment with half of your courage.

Kate

23 Replies
oldestnewest
RandyM

Hi Kate,

I took AREDS2 for 8 months and did not notice any improvement, but everyone is different. I know many seniors who said they had AMD 20 years or more and it never got worse. I used to work in a senior living facility. Yours may never need treatment but I would still take the AREDS2 or one with meso- zeaxanthin as my doc advised. Eat a lot of green veggies and get brighter light bulbs. Brighter lights helped me to see much better. Good luck to you!

8 likes
Reply
fed13

Welcome to the site ElviraKate. Do get in touch with the macular Society. I found them a great help and comfort, and a huge source of information. They have regular bulletins about everything you could possibly want to know. (Helpline0300 3030 111. The verdict is out as to whether we need to take supplements or not.. I do; recommended by my eye clinic consultant. But that's just me.

4 likes
Reply
eyesright

Sending you a hug Kate x

Can't say I've seen any improvement using supplements ( not areds2 formula) but equally not worse. i feel the macushield I take is easier than the green veg smoothies I was having!

Monitor your sight regularly with an amsler grid, that will both reassure you and provide early warning of any changes.

Enjoy your art and writing, best wishes going forward x

3 likes
Reply
kevinaki

Your retina clinic advised you to take vitamins for your eyes...........

See also:

macularsociety.org/sites/de...

macularsociety.org/news/res...

macularsociety.org/sites/de...

=======================================================================

Reply
Pumpkin71

Hello,

I'm in the US and I have early stage AMD. I've been taking an AREDS2 supplement for a year, on the advice of two doctors. Both doctors stated that these supplements will slow down the progression of the AMD. I've also read a lot, both on US and UK sites. US sites tend to state that the AREDS2 supplements WILL slow down the progression between the intermediate and advanced stages of AMD, whereas the UK sites state that the progression MAY be slowed down. I don't know what's behind the difference in position. I haven't seen any information suggesting that these supplements can improve dry AMD. Nevertheless, I will continue to take them and I'll eat kale by the bushel because I can't just do nothing. So far, my AMD hasn't progressed.

6 likes
Reply
AMD6yr
AMD6yr
in reply to Pumpkin71

Have NO idea where this post will end UP on this site, but want to bring "pumpkin71" up to date on my effort to resolve my eye problem! Here's what transpired yesterday after seeing the cataract specialist we were expecting would help this process along! Here are my notes from today's meeting with the cataract specialist in town:

October 9, 2018 Tuesday 1:15 Dr. Amin, Yuba City

---ultimate result of conference - he won't do surgery for me. I expect too much, the cataract is huge - "Why did you wait so long?",

surgery is complicated with no clear prognosis of success. He" is old and isn't capable of working on such a large cataract......." Would have implanted a "regular?"/"normal"? lens, not a multi-use one anyway. I'd need glasses the rest of my life (THAT's not any different than what I have now...........) "Find yourself another doctor."

I was left with the impression of similarity to a doctor many years ago, who disowned(!) me as a patient "because I was not cooperative" (meaning I asked too many questions and wanted too much information, diagnosis/prognosis - on my condition - colitis - and what the procedure - colonoscopy –entailed.) Dr. Amin's nurse conceded that is his attitude - go along, don't ask questions, don't expect answers. I am devastated at the moment.

I can't find answers to the questions that now come to mind: 1-why DIDN'T Dr Chang order the cataract surgery as she said she would on Aug 22? 7 weeks ago

2-2How big WAS the cataract when I was advised I had one that needed attention on Aug 7 with Dr. Reed? 9 weeks ago.

3- How long does it take for a cataract to grow? I am told this one is now huge, likely compromising the outcome.

Stay tuned, "pumpkin71"!

Reply
AMD6yr

Hello!

Assuming "ElviraKate" is "pumpkin71" . I'm not too computer-literate when it comes to replying, etc. I, too, am in the USA and I have dry AMD in my left eye and wet AMD in my right. Have been treated with eye shots (four different compounds) in the right eye for over 6 years, and was doing fine until the last shot on Aug 2 left me with a massive eye infection and total loss of sight! (Had a new doc and a new office for the same company-augh!) Treating the infection with steroids caused a small cataract to grow and now require surgery. After THAT is done next week, a second surgery to clear out the debris left behind from the infection will HOPEFULLY restore my eyesight. Can't see a THING out of that right eye since the infection started. DON'T BE DISCOURAGED ABOUT GETTING EYE SHOTS, just be SURE your eye is flushed out completely following the procedure. Would like to keep in touch with "pumpkin71", and others in the USA but also the UK for updates and new information. Wish me LUCK! User name "eyedoc123"

3 likes
Reply
AMD6yr

user name isn't eyedoc123; told you I'm computer-stupid!

3 likes
Reply
ElviraKate
ElviraKate
in reply to AMD6yr

Hi AMD6yr - pumpkin71 and ElviraKate are two separate people :) Pumpkin is in the US and I am in the UK. But we both seem to be at a similar stage of early dry AMD. Wishing you all the best and hoping that when the cataract is cleared your sight will return as well.

All very best

Kate

Reply
eyesright
eyesright
in reply to AMD6yr

Hi amd6yr, sending you a hug x

What an awful thing to happen.

I too have developed cataracts due to steroid eye treatment so I sympathize x although I knew it was a risk it was still a shock and made me angry and upset. Very best wishes to you on your infection clearing up and upcoming cataract surgery, mine is hopefully next month - we can do this!

Come back and let us know how you get on.

Reply
ayayay

Hi Kate

It seems very odd to me that some consultants recommend supplements and some do not. Supplements have never been mentioned to me (only greens) by by any of the consultants I have seen over the past 2 years or so. And so, although aware of them, I have never taken any since I am not keen on taking anything anyway. I do not think I fare any better or worse than most patients. It would be difficult to prove that I would have done better had I taken them. We simply cannot compare one patient to another as all our conditions and responses to the injections are different and differ even within one patient from treatment to treatment. I think we just need to do what feels right for us as individuals. May I just say that 'hard' drusen are more likely to turn to wet AMD than 'soft' drusen, but it does not necessarily follow. I wish you all the best, Kate.

Reply
wheezyl
wheezyl
in reply to ayayay

Hi Ayay,

You have this the wrong way around.

Drusen are yellow deposits under the retina. Drusen are made up of lipids, a fatty protein. Drusen likely do not cause age-related macular degeneration (AMD). But having drusen increases a person’s risk of developing AMD.

There are different kinds of drusen. “Hard” drusen are small, distinct and far away from one another. This type of drusen may not cause vision problems for a long time, if at all.

“Soft” drusen are large and cluster closer together. Their edges are not as clearly defined as hard drusen. This soft type of drusen increases the risk for AMD.

2 likes
Reply
StokeySue

The problem with supplements is that they are not medicine and they don’t necessarily improve existing damage. They may help slow deterioration and the CREST study did show a mild improvement, but probably not enough to show up against existing retinal disease.

So if you take the supplement it may we’ll be helping to maintain your existing vision, but there’s no way of knowing that for any individual. That’s why the AREDS studies were so big, you need a lot of data to show a long term and fairly marginal effect v

This true of all supplements, not just AREDS /CREST. If you start taking any vitamin supplement it really shouldn’t make you feel better in the short term, unless you were actually seriously deficient in the first place (conditions like pernicious anaemia treated with B vitamins)

Reply
ElviraKate

:(

1 like
Reply
Rosalyn-helpline

Dear ElviraKate,

I am copying a link to our Nutrition booklet:

macularsociety.org/sites/de...

Please do not hesitate to contact us for further discussion.

The Macular Society helpline is open 9am – 5pm Monday to Friday on 0300 3030 111.

Alternately, you can contact us via:

help@macularsociety.org

Kind regards,

Reply
StokeySue

I do take the supplements

Consider some imaginary numbers

Suppose I have 40% of “normal” vision

Taking supplements may stop or slow my vision dropping from 40% to 30%

But I’ll never be sure why it’s holding up or if the supplements have made a difference

I probably shoul have said this in the first place

1 like
Reply
ElviraKate

Thanks Sue and everyone else. I'll be ecstatically happy if it stays the same since there is no actual damage yet! But am still terrified and every odd floater (I have loads) or retinal after-image makes me pause.

Does anyone have a recipe that will make kale edible? :)

1 like
Reply
eyesright

Taken from my Ninja cookbook:

2 dates halved ( soak in warm water 30 mins), 1 stalk celery quartered, 1 ripe kiwi, 40g kale, 375ml hazelnut milk, 250 g ice. Blend.

110 g pineapple chunks, 110 g fresh mango chunks, 1/2 ripe banana, 5 g baby spinach, 5 g chopped kale stems removed, 125ml water, 250g ice. Blend.

10ml xtra virg olive oil, 1 clove garlic chopped, 1/2 small onion, 70g celery root peeled cut small, 85 g kale, 1 g salt, 1 g ground black pepper, 950 ml unsalted veg stock. stir oil, garlic, onion in pan until translucent, add over ingredients bring to boil, reduce heat to med cook 20-25min. Cool then blend. Simmer until heated.

I'm lazy - one supplement a day is easier lol

Reply
Rosie102

Hi ElviraKate

I have been diagnosed with Drusen. 4 weeks ago, I had 2 Surgeries in the one day, one for a new lens and Cataract removal, the other was the primary surgery which was for a Macular Hole,...a Vitrectomy

When l met with my Surgeon, two weeks later, l asked him about the Drusen and what this may mean for me in the future. He said that it may never develop further into AMD. My Optician had mentioned in September 2017 l had yellow spots but never went into much explanation. I

Please speak to the Macular Society helpline. It was during a phone call to them 're my Macular Hole condition, l mentioned the yellow spots and l was advised to ask my Surgeon if it was Drusen. That was the first time l had ever heard of this. They are extremely knowledgeable and caring.

I take Holland and Barrett Lurigold extra which contains Lutein and other ingredients pertaining to the Macular. I have heard Kale, blueberries an blueberries are also good. If you Google information on what is good for the Macular you will lots if fruit and vegetables mentioned.

God bless.

2 likes
Reply
Rosie102

Sorry, l meant Lutigold. Meant about Macular Sociey being very helpful, knowledgeable and caring, and l can honestly say so was my Suregeon

Reply
Argee

I am currently taking Swanson Kale capsules because I'm not fond of kale itself.

I'm hoping I can get the benefits of kale that way.

Reply
Melene

One more Reply!

The supplements can’t undo retinal damage but they will slow it down.

Obviously, a healthy diet is always beneficial.

I too am an artist and photographer and must think positively and appreciate everyday that is given to me.

1 like
Reply
Depoefan

I think Areds 2 does not go far enough. I definitely see improvement in black spot either partially or completely. when I take lutein and zeaxanthin. Even before Areds, I took multivitamins daily that gave higher amount than in Areds. And, I still got AMD. The first time I had a black spot it really scared me and I started doing a lot more research. Now, I do not take an Areds. I take a good quality multivitamin and mineral daily. I add to that 20 mg Lutein and 5 of zeaxanthin. It helps me.

Reply

You may also like...