Anti VEGF help: Hi there, I wonder if anyone... - Macular Society

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Anti VEGF help

bellapod77 profile image
10 Replies

Hi there,

I wonder if anyone else has had lasting side affects after anti VEGF?

During the first injections, I had a feeling of pressure in my right eye but no pain. In my left eye it hurt quite a bit. I was left with blood in the eye for around 5 days, as well as a headache for about a week. The second injections were worse. The right eye hurt when the needle went in. The left was excruciating. I was left with blood in both eyes. The right cleared up in around 5 days and the left cleared up after 10 days. However, I found I had a headache on the left side of my head and it didn't stop. It was a permanent dull ache. Similar to a background headache. I suffered for 2 and a half months with the same pain. The eye pressure in my left eye was elevated but not dangerously.

I refused the third injections and was told at my review that my vision had improved in my left eye and that I should have more injections. I was not listened to regarding the headaches and was told the pressure was within guidelines. I have now refused treatment as the thought makes me feel sick and if the I have a headache for 2.5 months after 2 injections, what will happen after another. I have been left with very sensitive eyes and have to be extra careful of the sun.

I wonder if anyone has any advice or has experienced something similar. I am at a loss.

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bellapod77
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10 Replies
kevinaki profile image
kevinaki

Q1: I don't quite understand, are you having both eyes injected during the same appointment?

Q2: Have all your injections been given by the same person?

ironbrain profile image
ironbrain

I fear you need the anti-VEGF to save your sight. Somehow something needs sorting out and as soon as humanly possible.

That is a sad tale of woe. I know of some people experiencing pain at the injection but rarely anything significant afterwards and certainly not for such long periods.

Two possible things to try, you could ask if a different anaesthetic is available usually clinics have at least two. In America it is common to have numbing drops followed by an anaesthetic injection although, I have not encountered that in the UK.

The other possibility is to ask if they will inject in a different quadrant of the eye. I does work in some instances. If it is successful ensure that it is repeated in that area.

IvyRose2 profile image
IvyRose2

I think you need to get medical advice re the headache it may not be anything to do with the injections, and analgesia for the headache or advice from your doctor. The injections are sight saving and I personally would have them especially if the clinic advised me to. Sorry that you are having these problems and I hope things settle down for you.

alison-g profile image
alison-g

I experienced adverse effects of avastin severe enough to stop getting injections about a year ago. All of my issues: GI bleed, joint and muscle pain, non-healing wound, abnormal white cell counts...were listed in the product information for avastin and were mostly resolved several months after discontinuation YET some doctors (not all) still insisted that it wasn't avastin that caused the problems. Go figure.... I don't recall getting headaches but I also don't believe it's a mere coincidence. You didn't say which med they injected but you can ask for the PIG (insert) which will give you the list of adverse reactions seen in clinical trials. Good luck!

I agree with IvyRose and the others. To have a headache for that length of time is not normal and needs to be investigated. But don't give up on the injections. Think of the alternative! Are you really prepared to risk the loss of central vision in both eyes? I really feel for you. I know that sending you a big hug does not solve anything but I will anyway. Do go and have it sorted. Contact the secretary of your consultant - they will have take notice. Also see you GP. Do whatever you have to do, but don't be fobbed off and don't give up.

Scrmom profile image
Scrmom

Do they remove an amount of eye fluid equal to the injection? My eye pressure increased so I was give eye drops that worked to reduce it (but not painful). I have switch between Lucentis, Avastin and Eylea, as things changed. I always ask for the numbing gel in the injection area, as well as the drops. Try to sleep for a few hours after the injections (my dr gives me Ativan at the time of injection). Seems the pain clears faster for me.

Good luck!

Ayralin profile image
Ayralin

Hello,

I have been getting Lucentis injections since March. I only get them in the right eye. Most of my side effects have been limited to about a week after. I compare how I feel to what I have felt with major dental work with novacaine - I have localized tenderness in the cheekbone, eyebrow and forehead and temple. the bones in that area have a tender moderately severe aching pain. That slowly ebbs away over a week. The eyeball feels tight and very tender, the injection site has pain - touching the eyelid or any pressure on it is painful. I do have a dull headache on the right side for that week after.

Long term side effects - the right eyeball always is render to pressure or touch. And I am aware of a general dull tender ache that comes & goes in the eyeball. I sometimes feel a tingling like nerve sensation in the cheekbone - that also comes & goes.

I hope you take other's ideas and talk to other healthcare professionals - possibly a change in technique, a change in the medication or a change the Betadine to the chlorhexedine disinfectant, or a change in the person doing the injection.

Please do not completely stop the treatment - loss of vision is unavoidable if you do. Before these treatments were developed, 10 years ago - going blind from these eye diseases was inevitable. I know - I am a nurse and 2 of my clients are in their 80s with near 90% loss of sight due to macular degeneration.

Be proactive and call other clinics, see your GP - maybe it's as simple as an iodine allergy or maybe the headaches are due to another issue. Please let us know what you learn and how things are going.

Ayralin profile image
Ayralin

Oh! I forget to say that I am more sensitive to sun, but I believe that is related to my eye disease of wet macular degeneration, not the injections.

Rosalyn-helpline profile image
Rosalyn-helplinePartner

Dear bellapod77,

I am copying a link to our factsheet on pain after injections, for you to use as a discussion point with your ophthalmologist:

macularsociety.org/sites/de...

As suggested, it is important that you discuss your headaches with your GP, in case there is another possible cause for them which could be addressed.

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:

macularsociety.org/sites/de...

Please contact us for suppliers details and to discuss your concerns further.

The Macular Society Advice and Information service is open 9am – 5pm Monday to Friday on 0300 3030 111.

Alternately, you can contact us via:

help@macularsociety.org

Kind regards,

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