Extreme fatigue after Eyelea: Hello. I’m... - Macular Society

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Extreme fatigue after Eyelea

Vich81 profile image
23 Replies

Hello. I’m just curious if anyone else experiences a period of fatigue after having an Eyelea injection? I’m not long after number 35 (CRVO 5 years ago). I’m 40. I sometimes feel it’s all in my mind but I know it’s always the same feeling after. It takes me a good 7 days to feel right.

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Vich81 profile image
Vich81
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23 Replies
thom3patty profile image
thom3patty

Yes I do as well been getting them for several years

Vich81 profile image
Vich81 in reply to thom3patty

It’s no fun is it. I point blank refuse when they try put me to four weeks instead of my preferred 8 weeks. I compromise on 6 when they try do that. I just couldn’t cope with a cycle of 4 weeks when I have work etc

Retired130 profile image
Retired130

Yes, the same with me, but my extreme fatigue usually only lasts about 24 to 36 hours.

Koalajane profile image
Koalajane

I don’t get this at all which is surprising considering my other illness (polymyalgia rheumatica)

Penelopeflower profile image
Penelopeflower

Sorry to hear that, I have been having Eyelea for quite some time but have never experienced undue fatigue, did not know this was a possible side effect.

tallyho profile image
tallyho

I don’t often feel tired after Eylea if I do it’s the journey there and the waiting around that I find wears me out, for me Eylea has no affect on my tiredness. I more often than not ask to have my appointments at the end of the day so I could just go home to bed but often can get on with the rest of the day fine. I ha e mine every 4 weeks we tried 8 and 6 and I lost a lot of vision doing that. I have diabetic Macular Odema and monthly injections since 2011.

Vich81 profile image
Vich81 in reply to tallyho

Wow you have been getting them a long time. The pandemic has actually improved my experience when I go to the clinic to get mine done. They no longer have loads of us sitting squished together at the same time waiting hours. It’s now in at your appointment time and pretty much done straight away. I get a later appointment and my partner now gives me a lift there and back. I’m really lucky as the hospital is only around 20 mins away too.

tallyho profile image
tallyho in reply to Vich81

Ah mine is a one stop shop clinic which is great I don’t need to go twice to my clinic just once and get it all done in one go. Wishing you all the best.

springcross profile image
springcross

Hi Vich81. I've had 47 Eylea injections since 2018 for wet AMD but I have never suffered with fatigue after any of them. Have you asked at the clinic if it is possibly due to the Eylea or maybe one of the other things used, such as the anaesthetic drops or the iodine wash or maybe the dilating drops?

Vich81 profile image
Vich81 in reply to springcross

Good point. It could be something else. I’ve just never bothered to mention it as I very rarely see a retinal doctor. I also think if they are doing the job then I guess I just have to suck it up as the injections are keeping the vision going.

enopmar profile image
enopmar in reply to Vich81

I wonder if it's the antihistimine drops. Antihistimine makes you tired.

StokeySue profile image
StokeySue in reply to enopmar

Do you get antihistamine drops with injections? I’ve only heard of people getting antibiotics and pressure meds. I would be surprised in any case if there would be enough antihistamine to cause persistent fatigue

Vich81 profile image
Vich81 in reply to StokeySue

I don’t think so. I do take a daily antihistamine anyway for allergies. I think maybe I’m just one of those people that always take a side effect with medicine

Thisisapain profile image
Thisisapain

I also have extreme fatigue the day of and the day after my injection. I usually let myself (I am retired), rest the morning after, and make myself take a walk in the afternoon, but have learned to keep my life as simple as possible for the first 48 hours. I have had 36 shots, every 4 weeks, so continue to dread them, but realize they keep me driving, reading and enjoying life the other days of the month.

Hettyho1 profile image
Hettyho1

Hi..yes I have always suffered fatigue for varying lengths of time after eylea. As this is not mentioned in the side effects I thought it peculiar to me and not mentioned it to anyone. I am elderly but a fit walker so it’s unusual for me to me feel fatigued like this. I have injections every 4 or 5 weeks since 2019.

StokeySue profile image
StokeySue

I’ve never received Eyelea, but I used to find the day after I was tired and “hungover” after a shot, in my case Lucentis or Avastin. I put this down to a form of post-operative shock rather than a side effect of medication, and in my case a dose of Diamox (acetazolamide) to reduce pressure spikes, that can also cause a “hangover”, but I no longer need that. My body seems to have learned to cope now

enopmar profile image
enopmar

The whole experience kind of wipes me out, LOL. Even though I'm used to it and it's so routine by now. My retinal specialist is so good. Sometimes it's so fast and painless I give him thumbs up and tell him "that was a TEN!!". But it makes me a little tired, and I think it's good to lie down for a little while with your eyes closed afterwards. Otherwise my eyes get really scratchy from all the other stuff they put around it and the drops.

ANGIEIRISH profile image
ANGIEIRISH

I fall asleep a lot but I put this down to the fact that I have extremely dry eyes and especially after the injections I find I have to sit with eyes closed just to help ease the extreme discomfort I suffer from. The act of closing my eyes is enough to send me to sleep but I don't think I can blame this on the injection!

Bob181 profile image
Bob181

Yes I did, I had Eylea for ischaemic CRVO and was on 4 week cycles for a while, which I found very difficult. I don’t have the injections anymore as they won’t give them to me. I still feel tired but now I have lost most my vision in my bad eye. I wondered if the fatigue was my brain working harder making adjustments to what I can see? I’m autistic with ADHD so my brain struggles a bit anyway!

Bluegreensea profile image
Bluegreensea

Hi Vich81I realise your post is a couple of years old. I had a two-year hiatus from this website whilst my eye was stable.

I've had two injections in the past 3 months and have felt bone-tired for a couple of weeks afterwards. I don't recall this happening in 2020 when my eye troubles first occurred.

It was explained to me that the (Eylea) injections are part of a wide clinical trial. Perhaps they tweak the recipe every now and then?

Vich81 profile image
Vich81 in reply to Bluegreensea

Hello! Oh I’m sorry you are having to have them again. Literally what a pain! I think maybe the drug just affects us all differently and some meds just don’t like me in general. I’m actually on injection number 47!! I’ve been holding out hoping that this new farisimab (think that’s the name), would be available to try but it’s not yet authorised for CRVO. My doctor is now going to try Lucentis in the meantime as nothing to lose. All we can do after is try and rest!

Bluegreensea profile image
Bluegreensea

Hi Vich81How lovely of you to reply!

Yes, we all respond differently. Your suggestion of brain-related fatigue is sensible. All those visual-adjustments, emotional and physical stress must take its toll. I am, by nature, a bit of a pessimist. I should actively try to imagine a better future in both my working and social lives. With every sight change I naturally see myself on a slippery-slope to nowhere-ville. No wonder I feel sapped of energy!

You know, this month I've surprised myself by doing 3 activities that I imagined I couldn't do well owing to my distorted vision:

1. Go-Karting

2. Ten-Pin Bowling

3. Darts

I came next to last in 1, third place in 2, and won one round in 3 (Darts.)

All the best to you, and everyone here for 2024. Life is what we make it, isn't it?

Xxx

Vich81 profile image
Vich81 in reply to Bluegreensea

It’s not easy to stay positive with eye conditions but we can’t let it get us down! X

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