VABYSMO (faricimab): I Have been having... - Macular Society

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VABYSMO (faricimab)

Annsandra13 profile image
28 Replies

I Have been having treatment for 5 years on both eyes and recently it was recommended I stop injections on my left eye as it virtually dry, the consultant has said both my eyes seem quite stable.

My right eye has since had 3 injections of VABYSMO (faricimab) and I have found it a positive experience and better for my eyes than Eyelea., I have been told that they will probably just continue to monitor both eyes going forward without injections.

I just wondered if anyone who is on Faricimab has stopped having the injections or have been told that injections will be stopped.

Is this normal protocol as I am worried my eyes will deteriorate without injections ?

Sending best wishes to all.

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Annsandra13
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28 Replies
Koalajane profile image
Koalajane

I think you will find that monitoring your eyes will be to check if you do need to restart injections, hopefully not.

I had DMO in both eyes but my left eye has improved and they are monitoring it regularly. My right eye is not so good and they gave me an Ozurdex implant and don’t want to see me for 3 months for review. I don’t think they use Vabysmo at my eye clinic but noypticevit was listed on my consent form for Ozurdex.

Annsandra13 profile image
Annsandra13 in reply toKoalajane

Hi Koalajane,

Thank you for your reply, good luck with your implant hope it will work out better for you, was it a difficult procedure?

I have been very fortunate to have injections for the last 5 years and through Covid, I did however become very poorly with Endophthalmitis and luckily I regain the sight in my right eye.

I suppose it’s a trust issue of are they monitoring to save NHS money or is this the right decision. Although I think we are now able to tell if there is a sudden change in eyesight.

Hoping you keep improving sending love and healing.

Xxx

Koalajane profile image
Koalajane in reply toAnnsandra13

Thanks for replying.

I was very nervous about the implant knowing it was a larger needle to let the implant into the eye. I was told the implant is about the size of a grain of rice. I always felt the Eylea injection so told the nurses I was concerned and one even put on my notes ‘lots of drops please”

When the doctor came in I said the same and she promised she would be gentle. The procedure was quicker than the Eylea injection. The doctor used an applicator to inject and I realised it had been done when I heard the click, no pain. It was also very quick. I had been told this doctor was the one who did them and she was excellent and knew exactly how to do it without putting pressure on my eye.

I was offered to have my Eylea injections every 4 weeks or have this steroid implant which dissolves in the eye and lasts for between 5 and 6 months. I decided to try the implant, because it is a steroid it can cause cataracts (I am on steroids for PMR which caused cataracts) and I have had them replaced) and raise your eye pressure which will be checked soon.

I asked about Vabysmo a while ago and was told they were waiting to see how it goes elsewhere so maybe it will be started soon.

Hope all goes well for you

Annsandra13 profile image
Annsandra13

wow that must have been really nerve wracking for you but thankfully it was a good outcome, it will be great if you have 5/6 months between.

I spoke to a few people in Clinic who all had been happy with Vabysmo and saw an improvement.

Hoping all continues positively for you.

Kind regards

Ann

JWills1912 profile image
JWills1912

Hi there! I am due my fourth Vabysmo injection for diabetic macular oedema in February and, to my understanding, if the injections have been successful they will be stopped at that point, or continued if required.

I assume they will just monitor closely and then the plan will change if the eyes then deteriorate. I am not sure if it is the same for your eye problems but perhaps this might provide some reassurance.

Wishing you all the best! X

Annsandra13 profile image
Annsandra13 in reply toJWills1912

Thank you JWills1912, it’s good to know that this is the protocol for Vabysmo, I was worried they were watching the cost element, thank you for the reassurance. Kind regards

tallyho profile image
tallyho

so glad Faricimab has worked for you. Did you have 3 loading injections or 4? I did not respond well to Faricimab but that might be because I have ischemia. I am back in Eylea.

You should def be monitored I would be expecting an appointment in about 3 months time if I were you. So do check. There is NICE guidance in this and if time today I will look it up I was in the NICE TA panel that decided it could be used on the NHS.

Badgolfer45 profile image
Badgolfer45

Hello, I have just finished a 4 years trial of Faricimab (AMD) and my eyes are now stable. I will be seen and checked regularly and will only have injections when and if they are needed. I’m keeping my fingers crossed that all will be well. Hopefully the same will happen for you. Good luck xx

Annsandra13 profile image
Annsandra13 in reply toBadgolfer45

Thank you Badgolfer, it’s good to hear you are having a good experience and a rest from the injections, I hope your eyes continue to stay dry. Are you really a bad golfer! I love the game and realised it is all down to instinct and learnt swing now to hit a ball after setting up!

Good luck and best regards

Badgolfer45 profile image
Badgolfer45 in reply toAnnsandra13

Hi Annsandra

Yes, I really am a bad golfer but thoroughly enjoy it especially when I beat my husband!

Regards Bx

Shimano profile image
Shimano

I have eylea both eyes for four years. My R eye dried up for several months but has now gone wet again. My hospital do not use vabysmo, also say they are not yet sure about it, it maybe it’s just more expensive! Good to hear you have had successful outcome. I’ll bring it up again with my consultant. Transport to get injections is a real issue for me as I have no family nearby and appointments are pretty erratic. Fewer injections would be a great relief all round. Thanks for your feedback. Always good to hear how others are getting on.

Rosalyn-helpline profile image
Rosalyn-helplinePartner

Dear Annsandra13,

During periods of stability, when no injections are needed, then it is a good idea to check an Amsler grid on a weekly basis. If you do then notice any sudden changes in vision, then it is important to contact the eye clinic straight away, in case your eye is no longer stable, and a rapid injection is needed. It is important not to wait until your next monitoring visit to inform the eye clinic of the change.

Hope this helps,

Kind regards

Macular Society Helpline

0300 3030 111

macularsociety.org

Annsandra13 profile image
Annsandra13 in reply toRosalyn-helpline

Thank you for the reassurance, I will follow your advice, I hope you are well, we all appreciate the support you give. Best regards

roynett profile image
roynett

Hi, I went for my three monthly injection appt, yesterday however, the Doctor has said my eyes are stable, so no jabs this time, I have to go back in one month for a check up, I had been expecting great excitement waiting for an injection pause, but for some reason, I don't, I feel very down today, I keep thinking that all the good work done on my eyes over the past 2 and half years will all go wrong again, like most of you I hated the injections, so what is wrong with me.

Shimano profile image
Shimano in reply toroynett

I guess treatment of this condition can be such an unpredictable rollercoaster that having a regular routine of injections feels like a safety net. My L eye is now on an “as and when needed” and I feel equally as uneasy as you. I go for a scan at opticians between injections which reassures me a bit, especially as my consultant says it is ok to send on the scan to her if anything looks amiss. Hope it helps to know you are not the only one who gets anxious at NOT getting the dreaded injection.

roynett profile image
roynett in reply toShimano

Thank you . xx

Annsandra13 profile image
Annsandra13 in reply toShimano

I hi Shimano, yes you are correct I think although the injections are traumatic at times we know they are saving our sight so to stop makes us anxious, we have to keep checking our eyes! Good idea for additional scans, will follow you. Best of luck Ann x

Annsandra13 profile image
Annsandra13 in reply toroynett

hi Roynett,

I feel much the same and nervous of my eyes deteriorating, the injections become part of our lives for good reasons. We need to check our eyes regularly xx best of luck try not to worry too much.

JJnan profile image
JJnan

wishing you good luck with implant, i am on my 5th Fabismo

injection ..gone dry once but next app slightly wet, still hoping it works

good luck xx

Annsandra13 profile image
Annsandra13 in reply toJJnan

Thanks JJan, wishing you good luck, I think the responsibility will be ours to continually check our eyes, hoping all will be successful for you, x

JJnan profile image
JJnan in reply toAnnsandra13

🤞🤞x

SueMulk profile image
SueMulk

I started on Eyelea in both eyes in 2020. The wet AMD right eye dried up with the loading doses and has remained dry ever since with only one slight leak of fluid which dried up of its own accord. My left eye continued to be slightly wet and they could only extend the injections to every 6 weeks., I have just finished the monthly loading doses on my left eye with Vabysmo. The justification for the switch was that they should be able to extend the period between the injections. I’ll be interested to see what they tell me next time I go in.

Atlas1522 profile image
Atlas1522

Hi Annsandra, I have also stopped my injections I had been receiving Eylea for 4 years in the left eye and 3 yrs in the right eye in the end I was getting injections every 16 weeks and then it was suggested I stop getting the shots in the right eye because my vision was 20/20 and it had been dry for some time after another year I stopped the injections in the left eye which I had already lost vision from dry AMD. It will be 2 yrs in April without an injection in the right eye and 1 yr. without an injection in the left eye and so far both eyes are dry but I do go to my retina specialist every 6 weeks to monitor my status. I’m told that a bleed could return at any time so I’m vigilant to get checked often. Wishing you good luck and I hope you remain dry.🙏🤞Cathy S.

In 2017, I noticed a slight 'smudge' in my right vision when putting on makeup, and as it was still there a few days later I went to the eye A&E, had an appointment the following day (a Sunday) at the emergency eye clinic and I was diagnosed with a branch retinal vein occlusion in my right eye, which happened at the same time as I had my first bout of atrial fibrillation coupled with high bp! This has caused macula oedema. I have had an Eyelea shot in my eye every 4 weeks since then. the Eyelea caused a cataract (!) so I had that done and the left eye a month later-the reasoning being the reading prescription is simpler. In November I had an Ozurdex implant in the hopes that it might help, but two clinic visits since has not shown any improvement. I am lucky as the nurses doing the shots are always very good. Fingers crossed for my next visit a week Monday!

Annsandra13 profile image
Annsandra13 in reply to

Good luck for Monday, I hope your eye will improve, thinking of you x

in reply toAnnsandra13

THANKYOU! How nice of you! Will let you know!😊

dcsurbiton profile image
dcsurbiton

I too had same situation. I have AMD in both the eyes and i dont need any injection in my left eye for last 12 years. Right eye still has issue thogh I was withotu injection for more than 2 year three years back but it gain came back. Currwently am taking Eyelea though for last one year ruight eye is still dry with injections : freequency is now 4 months and if it does not leak again, they may stop injection this time. This is stndard process : rememeber ther eis a risk with injection too and it is better not to have if not needed. As of now, I had 75 injections in my right eye. last 12 being eyelea

Atlas1522 profile image
Atlas1522

I was getting Eylea injections for wet AMD in both eyes for 4-5 years progressed to getting injections every 4 months, and had been dry for some time so I stop getting injections in my right eye, my good eye ,it has been a little over two years without a shot and still dry, it has been about 1 year without an infection in my left eye and still dry, I get checked by my Retina Specialist every 6-8 weeks and so far so good keeping my fingers crossed., but of course everyone is different. Good Luck

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