Injections : I have had 65 injections in my... - Macular Society

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Injections

Hoggy4 profile image
Hoggy4

I have had 65 injections in my left eye and 56 in my right eye. In June my left eye got infection and after 5 operations l lost sight in my left eye.l still have injection in right eye but since trouble with my left eye am having a lot of pain with injection also told the more injections l have the risk of infection increase so what do l do give up injections

34 Replies

I'm sorry to hear about your left eye. You were very unlucky as the risks are now very low - 1 in 3-4 thousand now I think. The risk is the same each time you have an injection- I asked about this at Moorfields as wondered if actually having the injections makes us more likely to get infection and they said no.Obviously the more times you run that risk the risk is higher but 70/4000 is still only 1.75 per cent chance - if my Maths is right!!

You don't say why you are having the injections but I think that would determine whether you decide the risk is worthwhile. If your sight is badly threatened you may decide the risk is worthwhile- if it's stable , although not perfect- you may decide otherwise- do talk to the doctors involved- a difficult decision for you

let us know how you get on

Hoggy4 profile image
Hoggy4 in reply to rosyG

Thank you

Candymam profile image
Candymam in reply to Hoggy4

I really feel for YOU Hoggy4. I decided against any more injections since I came out in the skin infections and still am a year later. Still no explanation but rather strange I came out in the eye infection ect almost straight after the one @ only injection

Hoggy4 profile image
Hoggy4 in reply to Candymam

How long ago was that

Candymam profile image
Candymam in reply to Hoggy4

Almost a year ago .

Hoggy4 profile image
Hoggy4 in reply to rosyG

They told meet 1/1000 and they call me the one

Hello Hoggy4

I agree with rosieG in everything she said; every injection carries risks as does any other medication. You did not say how much vision you still have in your right eye. That could help you making your decision. I believe in trying to preserve what sight I have left.

Do you mean the injections themselves are painful or the aftermath? I wear over-sunglasses for at least two days afterwards, which enclose the eyes almost entirely to prevent any dust or other foreign bodies from entering the eye, even in the house. Your eye clinic may be able to suggest soothing drops for the pain. You certainly need to speak your eye clinic. It is too much of a dilemma to decide on your own.

I hope everything works out for you in the end.

Hoggy4 profile image
Hoggy4 in reply to Ayayay80

Thank you

Hello Hoggy4,

Good replies from other posters.

Anti-VEGF injections always carry some risk, but serious side effects are extremely rare. You have been very unlucky.

If your eye needs treatment; in other words there is still a 'bleed', then it is worth persevering with the injections as your sight is very likely to deteriorate without them.

You should always report and post injection anomalies promptly to your eye clinic.

Good luck for the future.

Macular Society

Sending you a hug Hoggy4 x

I agree with what's been said so far.

Re the pain - if actual inj then ask clinic for more anaesthetic and a lighter touch. It made a big difference to me.

If post inj then try using soothing drops regularly ( I find Hylotear v good). It seems odd but dry eye is v painful and if your eye tears up my consultant said that means it's dry! My gp gives me the drops on prescription.

Best of luck going forward s

Hoggy4 profile image
Hoggy4 in reply to eyesright

Thank you for the hug it’s not the actual injections it’s the soreness l have a bad reaction to idene and l wasn’t having it for the last 2yrs, but since the lost of sight in my left I have to have it with injections. I lose my lose sight for 2 or 3 days and my eye just burns l use 4 halo tears a month but my eyes are that dry. I’ve had a word with consultants and they say it’s because of all the injections l think all the idene over the years has damaged my eyes when l first when in 2009 they use to flood your eye with idene many thanks

eyesright profile image
eyesright in reply to Hoggy4

Try asking them to use chlorhexidine instead of iodine

rosyG profile image
rosyG in reply to Hoggy4

it's difficult abut the Iodine but as it's been shown to be the most effective at reducing the risk if infection I would stick to it They may do rinsing afterwards if they think it's safe and that will reduce the problem for the dats after the injection

maryparry profile image
maryparry in reply to Hoggy4

Yes, ask for an alternative to iodine.I had that for ages and it was agonising. They don't like using alternatives but they agreed to in mine. Are you in the U.K.?

Hoggy4 profile image
Hoggy4 in reply to maryparry

Morning, yes live in the UK Hull

maryparry profile image
maryparry in reply to Hoggy4

Hi there, my optician told me that they are instructed to use iodine because it is cheaper...I told my consultant,finally, and he said I could have ...'Oilright with phenyllephrine'. It changed my life. I din't say anything for ages as I thought everyone had this reaction, then I saw more and more people saying...'No, it doesn';t hurt' and I thought...I'm not the greatest wimp al time so what is going on with me? Go for it.:)

Of course not. We all have to ask ourselves how defective our eyesight would have been if we had not had the treatment offered. Try and get your mindset into "it has extended my sight by ? years.

I know how difficult this is. Just before 1 had my first injection I was below par for driving. When reading I had numbers and letters missing from the text and had started to see faceless people when in a crowd.

I only had 8 injections and it made a huge difference and I was driving again. However the scans where still showing that there had not been sufficient improvement to continue with them. It had still been of benefit to me.

I have an excellent consultant and he offered me the steroid implant at the back of the eye. If successful you can have implants which last two to three times a year.

My eyesight has improved massively and the scans support this so don't feel it is the end of the road and pursue this treatment with your consultant. Just nd go for it.

Personally I found the transplant less intrusive than the injections and will continue to take any treatment offered.

Please pursue all options to hold onto your sight and don't feel alone - there are lots of "us" out there routing for you. We wish you the very best of luck whatever decision you take.

Ann

Hoggy4 profile image
Hoggy4 in reply to 123charl

Thank you

Thank you

Dear Hoggy4,

First let me say I that I think you are an incredibly strong person who was able to endure what you did. injections are NOT easy in anyway, shape or form! I got upset when I read your post knowing what you have suffered through.

My story is like this and I hope it helps you or someone else suffering with injections.

I have had 25 injections in my left eye over about a 15 month period. The doctor kept telling me they weren't working. Every month, he said, "sorry you are not getting the results like I hoped for". I was so depressed!! I was orginally diagnosed with CNV because I am highly myopic. Well, my doctor ended up leaving and I got a new doctor and for the first time heard....."I don't think I am going to give you any injection today". I exclaimed in relief and dred at the same time, "why"?! He said, "because I don't think you have CNV". You could have heard a pin drop. I started crying because I didn't know what was about to be told to me. The doctor then said, "I think you have retinoschesis for which we just monitor as there is no treatment. Retinoschesis is fluid between the layers of the retina which can also cause wavy lines and distortion which I have. It also can fluctuate, get a little better, then not, and can also stabilize.

What I am saying is please question the doctors, do research, get another opinion and be your own advocate. Yes, I think the injections although barbaric do help many people and I am grateful for that. What is upsetting is after that number of injections, what were you told? I really feel for you!! I wish you well in the future and take good care of yourself because only we can.

Best to you!!

Hoggy4 profile image
Hoggy4 in reply to BasiRose

Thank you

Hi Oggy 4 , I don't have any experience to be helpful but I feel for you and wish you luck for the future. I'll pray for your improvement also.

Sorry to hear this I have gone through Injections for the last 4 years no fun. Then I read a story about a woman who starting taking CBD oil and it cured her. So I though what the hell Im going to try this and I did last time I went in in Nov 7 it was good and was better than ever before no shots if you can get some CBD oil get it

Hoggy4 profile image
Hoggy4 in reply to Neomatrix

Where do you get CBD from please hoggy4

Neomatrix profile image
Neomatrix in reply to Hoggy4

I bought mine from a local smoke shop here In Colorado. For online orders there is a place called Charlotte Web cwhemp.com/

SYLKE profile image
SYLKE in reply to Neomatrix

Can you tell me how much you need to take and how often please?

There appears to be several CBD oils. Another mine field trying to find best available in UK. Have any UK members, any further useful information..

SYLKE profile image
SYLKE in reply to Bobbie915

I have started cbd oil today and I also use Areds2 as I refused anymore injections for my AMD. I will let you know after the 17th Dec what sort of results I get from it.

Hoggy4 profile image
Hoggy4 in reply to SYLKE

Thanks l will be interested in result

SYLKE profile image
SYLKE in reply to Hoggy4

The report back from the opticians that found the problem in the first place is excellent. No bleed showing on scan, no sign of cataracts, no scarring and the puff test showed reading in the normal zone. Prescription hasn't changed in 2 years, so no new glasses. He said considering I had AMD I really had very good eyesight. Needless to say I am so very happy!

You make me feel like I am a wimp. About 120 injections for you. I am at 26 and seriously thinking about quitting. I spend 3 or 4 days in bed each month because of light sensitivity. Even an eye patch is not enough because even thought it is only the left eye getting treatments, my right eye also becomes light sensitive. Not as severe as the left eye, but enough so I can barely keep my eyes open to walk 15 feet to the bathroom. Hang in there! I wish you the best no matter what you decide.

Hoggy4 profile image
Hoggy4 in reply to fernowl

Thanks I think I am going to continue with injections as it is better than loosing my bit of eyesight in right eye 60% and I hope all goes well for you hoggy4

Rosalyn-helpline profile image
Rosalyn-helplineAdministrator in reply to fernowl

Dear fernowl,

Individuals with a macular related condition tend to develop a heightened sensitivity to glare. The glare is produced by the blue light in the spectrum. Ordinary sunglasses protect against the UV but not the blue light. Therefore, individuals can find that they can end up trying to eradicate the discomfort from the glare by wearing ordinary sunglasses which are too dark for the lighting conditions, thereby obscuring their vision. The way to potentially address this is to choose spectacles from the anti-glare protection range, as they both protect against the blue light in the spectrum and the UV, and come in a range of shades. Therefore, an individual can either choose to purchase one shade or various for different lighting conditions.

Anti-glare protection comes in a variety of styles of frames; however, fit-overs are handy when an individual already wears spectacles.

In terms of colour choice, as an indication, e.g. yellow anti-glare fit-overs are generally good for indoor use as they do not reduce the amount of light coming in; reduce glare, increase contrast and definition. They are also suitable for outdoor use on a dull day when glare may still be an issue, but there is not adequate natural light to wear a darker shade. On a brighter day out an orange pair of fit-overs may be advisable, followed by an amber pair on a very bright day out.

I am copying a link to our booklet on Protecting your eyes. Please contact us direct if you would also like the suppliers details:

macularsociety.org/sites/de...

The Macular Society helpline is open 9am – 5pm Monday to Friday on 0300 3030 111.

Alternately, you can contact us via:

help@macularsociety.org

Kind regards,

I greatly appreciate the information, but my problem went so far beyond being a glare problem, it is hard for anyone to understand. I admit I have a glare problem especially when am in places that have light coming from all directions, like inside stores. But the problem I was mentioning was 1000 times worst and has actually been solved now.

I was having a reaction to Eylea. I literally could not keep my eyes open for the first several days after an injection. I had been trying to get my doctor and his staff to understand how severe it was, but it seemed like they either were not listening or I was doing a lousy job of explaining.

In December, I set my foot down and refused the injection until someone listened to me. They switched me to Lucentis and the problem STOPPED with the very first injection. There was zero problems with January's injection also. Tomorrow will be my third injection of Lucentis and I have zero reason to think the problem will start again.

Bad reactions to Eylea may be rare, but I cannot use Eylea. the reaction was so strong it was causing my right eye which does not get injections to have severe light sensitivity also. Eylea was like a torture treatment. Lucentis is no big deal causing no more than slightly dry eye for a day or two. It's as much difference as night and day.

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