Tips for newcomers please: As a newly... - Macular Society

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Tips for newcomers please

Clongowes profile image
14 Replies

As a newly diagnosed sufferer of the wet version of age-related macular degeneration I am now being injected monthly in both eyes with a loading dose for the next three months.

May I ask if between injections I can safely use moisturising eye drops ?

Is there anything I can do the ease the discomfort of the first 24 hours after the injections ? For instance I find standing under a shower when I first get home seems to ease the blurring, I take a couple of paracetamol and have an hour's lie down in a darkened room.

Any other tips please.

Thanking you in anticipation

Peter

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Clongowes profile image
Clongowes
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14 Replies
davidcyule profile image
davidcyule

Peter:

I remember my diagnosis and how very disconcerting it was. I will leave a detailed response to those more expert than I.

My own experience relates to many injections in one eye (the other beyond treatment) and some 10 years later the changes to my lifestyle are 1: I am not allowed to drive and 2: I read from a tablet where I can adjust the print size.

Some treatments have not caused discomfort. Others (when the analgesic wears off) I contend with by lowering the light or even attempting to sleep for a while. I am told pain killers can be helpful (I have a whisky).

My objective in replying is an attempt to reassure you that I have moved from despondent to optimistic and hope you can too.

fed12 profile image
fed12 in reply to davidcyule

I have had about half a dozen injections, with varying results afterwards as regards pain. Sometimes only a little discomfort, sometimes extremely painful few hours. The only thing that helped was to lie down in a darkened room. It always came on half an hour after the injection when the anaesthetic drops wore off.

I tried everything, but nothing helped. It was always worse when I'd been kept waiting circa 4 hours, having more drops put in prior to my injection, because the effect of the drops wore off as I was kept waiting so long.

However Macclesfield seems to have sorted itself out at last. The last clinic I attended was much smaller and I was seen an hour after I arrived, and had no difficulty obtaining an appointment within the proper time frame; something I'm very grateful for.

But the most important thing I'm most grateful for was that I was given some anaesthetic drops to take home for the post injection pain. They worked wonderfully! My advice is ask for these drops to take home. It's the difference between night and day! For the first time I had a comfortable evening post injection.

Clongowes profile image
Clongowes in reply to davidcyule

Many thanks I will certainly investigate getting post injection anaesthetic drops

Clongowes profile image
Clongowes in reply to davidcyule

Thanks David for all the advice. I trust I can substitute brandy for your whisky

Clongowes profile image
Clongowes in reply to davidcyule

Thanks for all the advice David. Trust I can switch my brandy for your whisky !

maryparry profile image
maryparry

Hi, it always takes me 2 days to 'get over' a jab. I have been told not to shower for 5 days after a jab, nor to fly, the shower thing is about infection, I guess the plane ifs to do with pressure. I get sterile gauze and immerse them in boiled cooled water, place them on my eye lids and....so to bed:)

Clongowes profile image
Clongowes in reply to maryparry

Many thanks Mary. I note the warning about the shower idea and will try your gauze treatment instead

ironbrain profile image
ironbrain

I've now had three Eylea injections, another one to come this coming Monday.

With the first, I felt only a little pressure with the injection but had to sit with my eye closed for two hours or so in the evening with a very sore, painful eye.

With the second injection, I felt a sharp prick (about as painful as not handling a rosebush cutting carefully) but the pain when the anaesthetic wore off was several levels lower than after the first. The eye had been swabbed more after the injection.

With the third injection, again a sharp prick (they're going to try a different anaesthetic combination next time), but in the evening only a little soreness and I could function normally, go on the computer etc ...

After the third injection I got going with the moisturizing eye drops as soon as I got out of the injection room. We are actually given these at MREH. I used them again at the bus stop, and, of course, again copiously when I got home. I now have paracetemol plus codeine capsules and ibuprofen plus codeine capsules (plus senokots for the morning!) and have taken two of each of the painkillers as soon as I get home – it may have been over medication for the third injections.

I've been told to use moisturizing drops every day. I like to use them after a shower to ensure there's no soap remnants in the eye (also sometimes before to make sure that any that gets into the eye is diluted as much as possible. I bought extra moisturizing drops on eBay, "6 x Hypromellose 0.3% eye drops "artificial tears" for dry eyes – 10ml", for £4.29.

Clongowes profile image
Clongowes in reply to ironbrain

Many thanks for all your advice particularly on the moisturising drops. I will follow through on that

in reply to ironbrain

I have had 80 injections and am fortunate in that I experience no pain and on occasion never anything more than slight grittiness in the eye several hours later. That never lasts more than an hour or so.

However, discomfort afterwards seems common. The most effective solutions appear to be, having the injection in a different quadrant of the eye, practitioners tend to have their personal favourite spot which does not necessarily suit everyone; diluting the Betadine antiseptic or, having the eye and surrounding area thoroughly washed post injection.

It has also been suggested that too much anaesthetic can lead to irritation once its deadening effect has worn off.

Hi Peter,

I take a couple of paracetamol about an hour before inj. And regularly the rest of that day up to 8 total. Always ask for lots of anaesthetic. Try to relax. Most importantly tell them you want a thorough wash out after - the iodine is the usual culprit for the gritty soreness ( akin to arc eye). If you still have continued soreness they can change the iodine to chlorhexidine but iodine is best so stick with it if you can. Avoiding infection is very important. I was told not to get water in eye for 5 days after inj so I'm very careful in the shower washing hair.

To avoid dust in eye when outside the first week I wear overspecs which have side pieces ( £7 coopers of stortford).

If I am in pain I distract myself - hot wheat bag on other side of head, fave film on tv ( can't see it but follow the soundtrack), munchies ( not too many lol).. I usually stay up very late night pre inj so am tired enough to sleep when I get home afterwards.

The moisturizing drops are well worth using - if they are sterile then ok to use day of inj. I use mine all the time 4x a day. I tried hypromellose but found they wore off quickly. Hylotear is a thicker liquid and has the benefit of lasting 6 months once opened ( although I open new bottle after inj just to be safe). My gp prescribes them for me and I prepay my prescriptions but if you're over 60 in England of course it will be free.

Sending you a hug - diagnosis is always a shock. There is every chance the inj will work for you. Sight problems are known to impact like bereavement so be kind to yourself. The macular society has lots of info and helpline support. Good luck going forward.

Clongowes profile image
Clongowes in reply to

Thank you for the hug. As you say it comes as a bit of a shock initially. I also take note of your showering advice and the use of pain killers BEFORE the injection. My wife is chasing up the moisturising drops even as I type so once again - thank you

Took your advice. Saw GP who immediately gave me a prescription for Hylotear. Thank you for the advice and the saving of £14 a time !!

Salcombe profile image
Salcombe

I have had about 40 injections. I found I was allergic to iodine, and when the alternative was given it was a lot better. I was also became allergic to several antibiotics. So make a note of each sympton, time after event etc so that you can inform the Doctor next time. I found wearing an eye patch for the first few hours very helpful as light makes the pain worse. make sure it is clean each time. Also, planning beforehand helps eg have meals prepared beforehand, plan to watch or listen to a TV/Radio programme you enjoy, and just try and relax and tell yourself it will pass.

Clongowes profile image
Clongowes in reply to Salcombe

Many thanks for all your advice. My wife has dug out a silk sleep mask so I can pop it on even as she drives me home as I find the glare hard to handle in those first few hours.

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