Retinal Vein Occlusion (eye stroke)

[PenguinMum]

I was diagnosed with the above and I am starting a course of antiVEGF injections in a couple of weeks. While reading up on this online, too many places to mention, there seems to a risk similar to that of a TIA of a cerebral stroke in the next few months (1 : 100). My question is to anyone who has been through this should I go on statins. I never intended to prior to this but now I am concerned. Thanks.

 

[PenguinMum]

Sorry but forgive me if I bump this up thread. @BibaBee are you able to give any guidance

 

[Dark Horse]

Were you advised to take statins before your RVO? The Royal College of Ophthalmologists say, "There is no clear evidence that a different therapeutic approach for medical risk factors is warranted following a retinal vein occlusion than would be recommended anyway." https://www.rcophth.ac.uk/wp-conten...l-Vein-Occlusion-RVO-Guidelines-July-2015.pdf

 

[Bluetit1802]

Statins lower cholesterol. I am not aware they help in other ways. Does yours need lowering? Do you believe lowering cholesterol reduces CVD risk?

I am so sorry to hear about your diagnosis - what a shock that must have been.

 

[PenguinMum]

Were you advised to take statins before your RVO? The Royal College of Ophthalmologists say, "There is no clear evidence that a different therapeutic approach for medical risk factors is warranted following a retinal vein occlusion than would be recommended anyway." https://www.rcophth.ac.uk/wp-conten...l-Vein-Occlusion-RVO-Guidelines-July-2015.pdf

Thanks for replying. When I was dxd T2 with HBA1c 53 eighteen months ago I was offered Metformin and statin as standard but declined to try and reduce BG by diet. Since then I have reduced BG and kept cholesterel ratios good and blood pressure also.
But I do think thereis often a lack of joining up of the dots and if vein occlusion is due to atherosclerosis I have a problem with cholesterel that I cant ignore.

 

[PenguinMum]

Statins lower cholesterol. I am not aware they help in other ways. Does yours need lowering? Do you believe lowering cholesterol reduces CVD risk?

I am so sorry to hear about your diagnosis - what a shock that must have been.

Thank you. I dont know what to think if I am honest. The hospital are not forthcoming with any info other than whats in front of them. I cant get an appointment with my GP for weeks though have a phone appointment next week. I am hoping someone on the forum who has come through this will be able to give me some info.

 

[BibaBee]

Sorry but forgive me if I bump this up thread. @BibaBee are you able to give any guidance

Mr B has been diagnosed with Diabetic Macular Oedema rather than RVO, but I understand the treatment is the same. In terms of statins, I know that cholesterol is something that needs to be kept under control in cases of diabetes retinopathy / maculopathy. We've managed to avoid statins so far, but one of the eye hospital consultants did question our reluctance for Mr B to take them. He has his 6 month review with GP soon, so we'll see how that goes. I'm sorry I can't be more help. Keep in touch....I know this is all very stressful for you.

 

[PenguinMum]

Mr B has been diagnosed with Diabetic Macular Oedema rather than RVO, but I understand the treatment is the same. In terms of statins, I know that cholesterol is something that needs to be kept under control in cases of diabetes retinopathy / maculopathy. We've managed to avoid statins so far, but one of the eye hospital consultants did question our reluctance for Mr B to take them. He has his 6 month review with GP soon, so we'll see how that goes. I'm sorry I can't be more help. Keep in touch....I know this is all very stressful for you.

Thank you @BibaBee that is very helpful and thank you for being so kind. I am prepared for the injections and grateful they are available but am just looking at my life now to see if there is any more I can do to help myself. I will keep in touch.

 

[DCUKMod]

I was diagnosed with the above and I am starting a course of antiVEGF injections in a couple of weeks. While reading up on this online, too many places to mention, there seems to a risk similar to that of a TIA of a cerebral stroke in the next few months (1 : 100). My question is to anyone who has been through this should I go on statins. I never intended to prior to this but now I am concerned. Thanks.

PenguinMum - I'm sorry you're having to go through this.

The reading you have done, where you read about the increased risk of a TIA/Cerebral stroke, do you have links to that? I'm curious whether the risk is considered elevated due to the RVO itself or the treatment received for it. I'm just curious.

 

[PenguinMum]

I

PenguinMum - I'm sorry you're having to go through this.

The reading you have done, where you read about the increased risk of a TIA/Cerebral stroke, do you have links to that? I'm curious whether the risk is considered elevated due to the RVO itself or the treatment received for it. I'm just curious.

Hi I have no idea how to link in websites here using my ipad. However if you google “eye stroke linked to risk of cerebral stroke” you will find lots of info. One of the ones most coehesive is the British Heart Foundation and Sciencedaily.com but there are others. The main reason for vein occlusion is altherosclerosis (plaque) so other CVD tests are recommended plus of course maintaining safe blood pressure and cholesterel levels. The only advice at the hospital was keep tight control of Diabetes and BP and chol. As far as I understand it the injections are just to control sight loss.

 

[NinaB73]

Hi @PenguinMum, I know exactly what you are going through!! I had a Central Retinal Vein Occlusion about four years ago.
I don't post much these days but still look from time to time and thought I really need to respond to this!

Scary! Is an understatement! When I first had mine I was told by a registrar to 'go away and see if your vision clears and we'll see you in a couple of weeks!' They were the worse couple of weeks... I don't know how your occlusion is affecting your eye sight? But mine was hopeless and I even gave up driving at that time and was scared to death that I was going blind!

When I returned to clinic, which you are scheduled to do, I saw my consultant and they they went into overdrive! Basically checking that everything else in my body was okay. So I had numerous blood tests to check my stroke risk and an angiogram to the back of the eye. This involves putting fluorescein dye into a small cannulla in your hand (exactly the same as if you were having a 'drip' in hospital), this then shows in detail the state of veins specifically to the back of your eye.

And then the injections! I was absolutely dreading those! But I can honestly say they were a amazing for me as I had been going around at this point for several weeks before my injection with limited sight and couldn't believe the difference it made to my eyesight, to me it was miraculous! I now still drive and do all the things I used to do with the exception of reading, which I love and succumbed to the kindle simple so I can 'up' the font!

I worried hugely about the risk of stroke and when I signed the consent form for the injections it highlighted the risk of stroke from the injections and I must admit I convinced myself I was going to have one!! But I think if your eye clinic is 'on the ball' excuse the pun, they should have exhausted the risk factors to a certain degree.

Sorry for the long winded post when you were asking about statins! I don't take statins, simply because I tried, not because of the eye problems but simply because on my 40th birthday I was offered them as a present I tried them, but couldn't tolerate them! My cholesterol is mainly 'good' cholesterol so no one has pushed them since. I do however take 75mg Aspirin a day on advice from my eye specialist but everybody is different so you really need to be guided by your specialist.

A very close friend of mine also had a vein occlusion (branch) and although she still went through all the same tests to the back of her eye she had required fewer injections to get on top of hers, but has been told she may still need them in the future. She is not diabetic.
Please PM me if you would like to talk, I know this a hard time!
Nina

 

[PenguinMum]

@NinaB73 thank you so so much for responding. You were exactly who I was hoping to hear from. Thank you for sharing your story. I dont really want to go on statins but I guess it wiuldnt do any harm to put myself on 75g Gastro resist asprin which my OH also takes, i have compromised eyesight in my r eye but TG ny keft eye is fine so I am hoping it will all work out. I cant thank you enough for getting in touch. All best wishes.

 

[NinaB73]

I would run the Aspirin by your eye specialist first before taking it! Like I say everyone is different and in your case it may not be the the way they want to go with it. When are you seeing someone next?
If you have any concerns re injections etc and I can help in any way I am only too happy to, I felt so alone at that time!

 

[jjraak]

Sorry your going through this @PenguinMum ...hugs

But what a great forum, with others especially @NinaB73 , coming through with her post .

Can't help in any way, just wanted to touch base, wish you well, and a small prayer, won't go amiss for you.

Hug x

 

[PenguinMum]

Sorry your going through this @PenguinMum ...hugs

But what a great forum, with others especially @NinaB73 , coming through with her post .

Can't help in any way, just wanted to touch base, wish you well, and a small prayer, won't go amiss for you.

Hug x

Thanks so much jj....yes what a great forum indeed. I am awake and just been to the kitchen for water so have probs messed up my DP for my FBG. I just want to get on with my first treatment now but 2 weeks away. Thank you for the hugs and prayers and of course you can help, you always do. Hope your Steph is comfortable and not in pain.

 

[PenguinMum]

I would run the Aspirin by your eye specialist first before taking it! Like I say everyone is different and in your case it may not be the the way they want to go with it. When are you seeing someone next?
If you have any concerns re injections etc and I can help in any way I am only too happy to, I felt so alone at that time!

I wont do anything about med until I see the Consultant in two weeks time. I have a phone call booked witg my GP next week and I am sure she will push statins so maybe I should cancel that. Thanks again.