Macular Society
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Here's some good news . .hope it provides encouragement !

Just to say that after a year of Eylea treatment - first injection last June, every 4 weeks until Christmas, every 8 weeks until this June, I have now been moved onto every 10 week injections. So all going in the right direction! I have to keep an eye on the other eye (?!) In case it goes from dry to wet but it does feel good to have that longer time between injections.

I did take vitamin supplements of Macushield, though only 2 tablets daily as they are really expensive and now I've found equivalents derived from blueberries, to take.

I've found injections variable in their application but have discovered that relaxing as much as poss helps as well as telling the nurse that I am nervous and have had pain in the past so get enough numbing drops. Afterwards I take a couple of pain killers and use eye drops copiously whenever needed, so there is no gritty build up.

The only visual disturbance is a tiny 'blip' now and again..

So I just want to say a big thanks to the NHS fir their prompt, friendly and efficient rratment!

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Thank you Cateseyes235, so good of you to post some positive news. So happy all is going well for you.

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So happy for you I am relatively new to eyelea I went thru a series of 3 injections in each eye seemed to help a lot then they decided to keep me on maint plan of every 7 weeks hopefully building up to 10 weeks I am due to receive 2nd injection of the 2nd series and doesn’t seem like it helped as much as first series I have read in here sometimes one injection doesn’t help or even makes worse then the next clears it up I hope and pray this is the case for me thanks for your info gives me hope

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I do hope it works for you. We are all different and my condition was caught very early. I got checked out as both my brothers have AMD, oldest is registered blind but he developed this pre Eyelea and as he kept smoking, what treatment he received was a bit wasted? My other brother has also reacted well to Eylea now in his 3rd year of treatment with injections 8 weeks apart. Good luck with your treatment!

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What kind of macushueld do u take I saw several on amazon I take lutein with zeanathin and I also take lutein 24 with bilberry and blueberry thanks

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Yes I've also found the same sources of lutein and zeanthenin!

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Macushield Gold which I was advised to take (though none of the specialists have asked if I am taking it!) is even more expensive and I am pretty poor! It's not just a few pennies to me. The active ingredient - zeanthenin and lutein can be found in other supplements and derived from blueberries and marigolds. I also take other supplements for arthritis and thyroid . . (Yes eyes good,..... knees rubbish ) so it all mounts up!

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Yes and I have been having Eyelea for nearly a year after changing from Lucentis which was making little difference, I have an injection every six weeks. The staff are excellent and it has improved a lot and the fluid began to shift and move after second injection. It is still a little wet but I am hopeful, I too take macushield gold and seven seas joint supplements. I also have lost weight exercise and try and eat lots of blueberries, kale etc. I cannot thank the NHS enough, both my parents were on the blind register so I consider myself extremely lucky.

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Any good tips on weight loss? I have a very good diet, cook from scratch , no junk food loads of veg and fruit but it's the painful knees that prevent the level of excercise I'd like. I do take cod liver oil etc. but still need painkillers before a day's walking (usually bird watching or bug hunting).

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Hi, I go to Slimming World weekly and help the Social Team with the shop. This makes me keep to my target weight and be good most of the time. I've also made some lovely friends and we all support each other.

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Thanks for that. Not sure groups are for me. I think if I can use pain killers for my knees ( talked to my doc who reassured me I was worrying unnecessarily about taking 2 painkillers once or twice a day) I should be able to get more exercise. I don't have a sweet tooth, hate creamy stuff and avoid pastry, too much refined white flour or sugar and cake to stop acid reflux but I know my weakness is crisps and cheese!! I did treat myself to home made quiche for my birthday and used tofu instead of cream . .worked well!

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There is no harm in requesting an alternative injection as sometimes different medications have different effects on different people. Explain to the staff that you are worried regarding your eyesight may deteriorate. Most hospitals follow a protocol for treatment. I actually asked if I could change to Eylea, I think my local hospital is using eyelea more now.

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Hello again, I was overweight, my local chemist was running a 12 week free weekly weigh in and diet sheet. You go into a small room seen privately and given help. This is still available at chemists now, also they have online help as well. I lost 1stone in 12 weeks. This may help. I’m now in a size 14 dress.

Cheers Pauline.

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Hi Catseyes235,

so glad to hear Eyelea is working well for you. It's such a wonderful feeling when we get even a short break from the injections.

As far as the weight loss is concerned, it sounds as if you are doing all of the right things already. A couple of years ago I started losing weight and managed to lose 6 stone but instead of putting it straight back on again (which has always happened before) I've had a stable weight for more than 12 months now. I eat 3 regular meals a day but delay my first meal until mid-day and rarely eat after 9 pm. I know that's not for everyone, but it has helped me. I also eat more sensible portion sizes now, apart from scoffing mountains of greenery and veg at every meal. Walking is my exercise of choice and I love dancing too; it must be frustrating for you to be in pain a lot of the time. Good luck with your eyes and your waistline; I hope you're enjoying this wonderful summer x

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Thanks Kalahuchi. There may also be some link for me with thyroid meds as lots of us thyroid sufferers gain midriff weight but if take T3 it drops off. Except T3 has been disallowed by NICE. Haha having a few conditions to think about stops me worrying about one thing. Could be worse though . Worse things happen to people.

Latest dietary thing is totally anti-carbs and pro fats and proteins. Apparently can reverse type 2 diabetes. Gets quite confusing but yes I could cut down portion size more though don't eat as much as when my thyroid was overactive and the I hated being skinny! Can't win . .

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Hi catseyes, fruit and starchy veg both contain sugars which the body turns to fat. Limiting these will help.

I just watched a very scientific tv prog about beating diabetes through diet.( 'quick fix diabetes' on itv I think) There was a strict version which I cannot contemplate but also a couple for those at high risk but not diabetic yet ( like me). I am following the 18:6 where you take all your food in a single 6 hour period (foods that are 150 cal per 100 g or less ). I was pretty much doing that anyway on work days so it's been fairly easy to extend to the full week. Lost 8 lb in 2 weeks and feel good.

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Yes done the science but the difference is that starch only releases/ changes to sugars slowly. The programme didn't really reflect different lifestyles and excercise levels. E.g I've seen what old time, a active farmers ate in Scotland and they would not have survived on a low carb diet and without their porridge. Today we have far more sedentary lifestyles but haven't left our appetites behind . . But now they are saying all the fats I love are fine . Not so sure the innards agree but sounds more like Atkins revisited!

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I'm really interested that a change to Eyelea has helped you. I have had 11 Lucentis injections but was told at my last consultation that they were not working. The consultant implied that as I had not responded they would stop giving them to me but said there was at the moment no alternative... as Lucentis is the gold standard at this present time. I have been wondering whether a change in the type of injection would at least be worth trying and as I have a consultation next Tuesday I'd like to be armed with the right questions.

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Sorry I've never been on anything but Eyelea. Are you in the UK? I've always been led to believe that Eyelea is the gold standard! Pretty sure it was last to be licensed in UK. I would go back and demand Eyelea.

My brother started on Eyelea then because he had a reaction to an injection, which hospital thought might be Eyelea he was given an alternative. However this was not as effective so they changed back and he's been fine and now on every eight week injections. Maybe do some research but I think your consultant needs updating and ASAP .... Good luck!

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Maybe the administrators here can confirm which treatment is proving mist effective.

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Hi Chinsie,

what macular condition do you have and are you from the UK? Initially I had Lucentis but the injections got closer and closer together and eventually became ineffective. I was switched to Eyelea in the nick of time, but had to fight like crazy for access to the drug as my condition is myopic cnv and not wet AMD. Eyelea was only approved for myopic cnv in November but many doctors simply don't know they can use it now - I had to be quite assertive both with medical staff and my local Clinical Commissioning Group when they denied me the drug early this year. The Macular Society are great for advice (0800 3030 111) and also my MP became involved. Eyelea has dried up both eyes for the last 3 months so it is certainly worth a try.

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Thank you Kalahuchi and Catseyes235 for your replies. It is so helpful to hear from someone who has had treatment for a while and to find it is working for them. I have wet AMD in my right eye and macular oedema in the left. The left eye is a complication of a cataract OP and is treated with eye drops. I shall definitely ask regarding a change of medication for the right eye as I think it is quite possible that people respond in different ways to different things. The consultant I saw at the last appointment was new to me so maybe if I see someone on Tuesday who I have seen before, they will speak differently. Thanks so much for your replies.

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I have had 12 injections over 2 yrs and went to see the consultant last Friday and was told they are happy with the treatment will not need any more injections will be monitored now and see how things go on. Got to see them in 8weeks time

Good Luck

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It's been difficult to pin them down as finding an absolute cure though it was hinted this may be possible. I think they are quite rightly cautious about declaring cures but injections every 12 weeks is what they are aiming for and if that is what it takes to keep this condition at bay I'll be happy with that! Catching the condition and treating early seems to be the way to go. Those I've met in the clinic on frequent injections for years were not I think picked up early enough.

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I hope you let us all know the outcome!

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Very glad to hear of your progress with Eylea, Catseyes! I hope you can get to the 12 week intervals. Because of the silicone bubble in my eye from a recent Avastin inj, the doctor has agreed to try me on Eylea instead. I will get my first Eylea inj on July second. I hope I do as well as you with it.

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Nice to hear from you but so sorry to hear the bubble is still with you. Have you got used to it or is it still irritating? Good news that you're being put on Eyelea - about time too when It's supposedly better and you . . or your insurance . . is paying for the pleasure. Not sure why you have to wait until July though? Let me know how ut goes. One thing I know isn't good for my eyes is the exam invigilating I've been doing. Concentrated watching is exhausting! All the best. .

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Thanks, Catseyes. Yep, the bubble is still with me, and always will be according to the doctor, unless I want surgery. It is annoying, but then so much in life is (ha)

I think the Eylea will cost me a much larger co-pay each time. But I am not sure.

I was not due to have another Avastin shot until July second, so the doc decided

to just start the Eylea then instead. My eyes get very tired from looking at too

much detail - tv, books, or the internet for instance. Fortunately there is little I

absolutely have to read. My attention to detail is kind of fading with age anyway.

Cheers.

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'My attention to detail is fading with age' . .I may put that on a t-shirt!!

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Ha!

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Glad you are coping with it all.

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