Age related macular degeneration.

[Bob McParticipant @bobmc91481]

Hi all…

I think that there are many model engineers who are in their more mature years of life and I class myself in this group; I am sure that some of you may have heard of 'aged macular degeneration AMD' which I started to suffer from nearly two years ago.

The condition causes dark areas and distorted vision, just what is NOT required for model engineering, fortunately there is treatment for some types of the condition which includes injections in the eye, and I have had quite a number of these. There are also some medicinal tablets which used to be free for OAP's on prescription, now however the free prescription has been withdrawn and I received a letter from the NHS stating that the tablets are not necessary for people who have a balanced diet.

In my opinion the tablets which can be bought at the pharmacy without prescription DO make a difference and I can't understand why older people are not made aware that they could avoid the condition if the tablets were taken even if your eyesight is good, in my opinion.

I don't want to put anyone off having the treatment there is no pain you don't feel a thing…but the thought was enough to make my hair (whats left of it), stand on end.

I would urge anyone in our age bracket to consider taking the pills which have as a main ingredient 'Lutein' found in Kale I believe.

I must make it plain I am not in any way connected with the medical profession so I can only say seek medical advice if you are considering taking these tablets.

Rgds…Bob…

[Bob McParticipant @bobmc91481]

My opinion that it can be avoided.

[Michael GilliganParticipant @michaelgilligan61133]

Thanks for sharing this, Bob

Fortunately, I have no sign of AMD … but I am generally interested in eye disorders.

A quick search turned-up several useful references, including these:

**LINK**

https://www.nhs.uk/news/food-and-diet/foods-to-stop-you-going-blind/

**LINK**

https://www.macularsociety.org/news/nhs-consulting-plans-scrap-£15m-spend-lutein-supplements

**LINK**

http://cochranelibrary-wiley.com/doi/10.1002/14651858.CD000254.pub4/abstract

.

MichaelG.

[Ady1Participant @ady1]

A lot of these herbal things can be good as well

My dad spent too much time on his feet and didn't look after his legs when they ached

It eventually became agonising for him to be on his feet and the doctor wasn't that interested

A relative gave him some Rutivite and that was nearly 20 years ago, it really saved him a load of grief

So consider seeing a decent herbalist as well, some of their stuff does work

[Bob McParticipant @bobmc91481]

Thanks Michael,

I had not seen that study by nhs.uk/news….. but it seems to confirm my views about taking the supplements.

if I had known about it previous to having this condition I would have gladly taken it and believe me when I say that when you wake up one morning and there are dark patches right in the centre of vision and then find out it can cause something akin to blindness you start to think that your life has virtually finished.

The condition for me has improved due to the fantastic treatment by the NHS opthalmic surgeon and I would not have written this forum post if I had not had the experience of stopping the supplements only to find that the condition worsened, after a week or so of resuming taking the supplements my vision responded quite well again.

The consultant I have for treating the condition was quite adamant that the NHS were totally incorrect is making the statement that the supplements did not make a difference.

….Bob..

[herbert punterParticipant @herbertpunter99795]

I have a similar condition except that mine is Macular Dystrophy, which is not thought to be age related.

The only treatment for it is supplementary pills like Macushield Gold, not particularly cheap at a quid a day, but better than nothing.

One of the effects of this condition is that straight lines have bumps in them, it seems strange at first to see power lines with these impossible features.

Bert

[mick70Participant @mick70]

got to agree with herbal.

drs useless at sorting my knee problems then friend said try turmeric we use it on our horses.

very little pain or discomfort these days.

[Bob McParticipant @bobmc91481]

Thanks Bert and Ady1….

these are the things that people generally don't really want to know about until its too late… better at least to have some knowledge of what can be done to avoid them.

Thanks…rgds…Bob…

[Neil WyattModerator @neilwyatt]

The macular society link appears to be broken. (404)

Neil

[IVATTLMSParticipant @ivattlms]

What is the name of the stuff

[Ketan SwaliParticipant @ketanswali79440]

Timely post Bob, thanks for the information. Just ordered some for someone.

Ketan at ARC.

[Ketan SwaliParticipant @ketanswali79440]

Posted by IVATTLMS on 11/07/2018 15:56:59:

What is the name of the stuff

There are plenty of brands available if you google… with different levels of potency.

[larry phelan 1Participant @larryphelan1]

Doctors are not really too interested in you when you reach a certain age [our age ],and you can see it in their attitude when you need to visit them. It,s like someone bringing in a clapped out item in to you to get it repaired and you know there,s nothing you can do with it. They just want you out of there,so they give you a few pills and tell you to take one three times a day and come back next month or the year after.I,ve been there,done that,and still have the tee shirt !.

I get better attention,and results,when I bring my dogs to the Vet !.

[Brian Sweeting 2Participant @briansweeting2]

Is your condition 'dry' or 'wet' as a friend of ours has wet and any info is useful.?

[Gordon WParticipant @gordonw]

An easy way to get treatment free is to move to Scotland. I'm type 2 diabetic so have some experience, but diet does most good. I grow kale but it gives me gout, the joy of aging.

[Ian Skeldon 2Participant @ianskeldon2]

Sadly I do work in the medical proffesion, here is what I know about AMD.

It can effect men and women equally, it can start as early as in your fifties but may go un-noticed. Smokers are affected much worse than none smokers and taking suppliments while still smoking is almost a waste of time.

 

Diabetics, please try really hard to control your blood sugar levels, avoid highs and lows. A slightly high norm is better than fluctuating levels.

Anyone with hypertension, start to gradually take exercise and try to naturally lower your pressure.

Lutein and zeaxanthin along with a few other extracts are usually used in the food suppliments reccomended. Macushield Gold is indeed something that is reccomended, it has been withdrawn from the NHS list of prescribed medications as they (the NHS accountants) claim there is no real evidence that it works. I am a mere sixty and take one tablet every day at my own expense, I really wouldn't bother if I thought it was not worth it.

There are at least three types of medication injected into the eye, Lucentis (ranibizumab) and Eylea (aflibercept) being teh most common ones used, Azorp or similar is sometimes used.

Wet can be treated, dry is usually monitored and cannot be treated.

If I were to pass on advice it would be as follows,

1. Anyone who does smoke, STOP ! it's no longer a hunch that smoking is bad for you, we very rarely treat old aged smokers cos they die before they get old, it really does cause a lot of damage to your body.

2. Take suppliments containing Lutein and Zeaxanthin (20mg a day is best, but 10mg a day is better than nothing).

3. Wear sun glasses especially if you have pale blue or grey eyes.

Companies are working on improving treatment for AMD all the time but prevention is really better than cure as we can't actually cure it, only try to stop it getting any worse.

Surgery closed now !

Edited By Ian Skeldon 2 on 11/07/2018 16:53:09

[Michael GilliganParticipant @michaelgilligan61133]

Posted by Neil Wyatt on 11/07/2018 15:49:21:

The macular society link appears to be broken. (404)

.

Sorry, don't know why

Try this: **LINK**

https://www.macularsociety.org/search/node/lutein%20supplements

MichaelG.

[Fowlers FuryParticipant @fowlersfury]

Re; "Doctors are not really too interested in you when you reach a certain age [our age ],and you can see it in their attitude when you need to visit them. It,s like someone bringing in a clapped out item in to you to get it repaired and you know there,s nothing you can do with it. They just want you out of there,so they give you a few pills and tell you to take one three times a day and come back next month or the year after."

It is unfortuate that Larry Phelan should feel that way about his treatment by GPs, but surely it is a gross generalisation. The local GP practices I've known have excellent attitudes to geriatric care.
Over the years I had eye surgery followed by complications for cataracts, detached retina, haemorrage and now glaucoma. The NHS as the local GPs in our health centre and the big teaching hospital's opthalmology dept have been caring, attentive and supportive.
Whilst knowing nothing about Larry's mobility or distances involved, perhaps he should consider changing GP.

I'm ever grateful for digital displays in the workshop these days and marvel at the workmanship of elderly watchmakers etc 200 years ago.

[Bob McParticipant @bobmc91481]

Hi all again…

Brian Sweeting….I have Wet AMD… this is treatable.. I can vouch for that, I am indebted to Herbert Punter who mentioned Macular Dystrophy and Macushield Gold I have not heard of it as yet and thanks to Ian Skeldon2, I will ask at the opthalmic clinic if I should get some.

I would also again submit my praise for the NHS, the care I have received has been excellent and I was told that the injections/surgery each time cost around £1000, I have had 8 treatments so far!

One thing I would like to find out is how many people per head of the population are affected by this condition? when I go to the clinic there always seems to be a long queue, it must be a very common complaint.

rgds..Bob..

[Ian Skeldon 2Participant @ianskeldon2]

I'm afraid that all doctors are capable of having an off day just as engineers are, I know that's not a lot of help to Larry and maybe his GP could be a little more caring. The NHS spends more per head on over 60's than under 60's so care is not withdrawn or tapered off because of age. Sometimes with age comes weakness and so treatments that would have been available when the patient was younger may not be advised or offered for that reason.

AMD is on the increase because we are all living a bit longer, it's the same story for all of the age related conditions such as dementia.

Bob your well informed, the cost per injection is around the £1000 mark, but if it saves your sight, it's money well spent. AMD and other conditions such as Glaucoma is also on the increase along with diabetic retinopaty and again is largly down to living longer.

[Michael GilliganParticipant @michaelgilligan61133]

Posted by Bob Mc on 11/07/2018 18:02:27:

One thing I would like to find out is how many people per head of the population are affected by this condition? when I go to the clinic there always seems to be a long queue, it must be a very common complaint.

.

Bob,

Here are some statistics, from a US source: **LINK**

https://www.brightfocus.org/macular/article/age-related-macular-facts-figures

… Not happy reading.

MichaelG.

Macular degeneration is widespread.

• As many as 11 million people in the United States have some form of age-related macular degeneration. This number is expected to double to nearly 22 million by 2050.
• The number of people living with macular degeneration is expected to reach 196 million worldwide by 2020 and increase to 288 million by 2040.
• Age is a prominent risk factor for age-related macular degeneration. The risk of getting advanced age-related macular degeneration increases from 2% for those ages 50-59, to nearly 30% for those over the age of 75.

[Dick HParticipant @dickh]

Many thanks to Ian for the clear explanation.

As too the injections, a friend had a brush with these injections some years ago in trying to save an eye. At the time the clinic here in S. Germany was using Avastin in an off-label use and diluting it themselves. They had patients set up on a production line, the injections had to be given under full operating theatre cleanliness conditions. Thus one vial of this stuff (Avastin) went a long way. The cost difference between Lucentis and Avastin still makes me wonder. The question was debated in 2015, with even the BBC taking notice.

As to my friend, in the end the problem had another cause so the treatment didn´t work.

Perhaps a reference to the "Amsler Grid" would be useful as it is something that can easily just be printed out.

DickH

.

[Ian Skeldon 2Participant @ianskeldon2]

I would advocate that everyone aged 60 and over along with anyone who has a family member with Glaucoma, to have regular eye tests, any good optician will pick up AMD, raised IOP, Cataracts and diabetic retinal changes along with other conditions,early on. If the refraction test shows that you need a new perscription, you don't need to buy your new glasses from that optician, and the perscription is yours to take away.

As Dick has said, if you google 'Amsler Grid', you should be able to print one out, if the lines are distorted in any way, get someone else to look at it, if it all looks square to them, you need to see an optician, fairly quickly.

Edited By Ian Skeldon 2 on 11/07/2018 22:19:07

[Nick Clarke 3Participant @nickclarke3]

A word of caution –

Although I work with the blind and visually impaired every day I'm afraid I made a daft mistake.

My optician gave me an Amsler grid to monitor my sight and it was very distorted – when I looked at it through my varifocal glasses!

After a moments panic I looked at some print and realised the issue was with the glasses not me! – subsequently confirmed by my optician.

[herbert punterParticipant @herbertpunter99795]

One thing I should mention which is common to all forms of sight loss including macular degeneration and cataracts is that when the brain doesn’t receive the expected signals from the optic nerves, it can make up its own visions from the memory. This is known as Charles Bonnet Syndrome and can be really alarming if you aren’t prepared for it.

Bert

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