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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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.
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.
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.
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.
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.
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.
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