Switch to Beovu?

[3furryfiends]

I would like further information about the drug Beovu. I have had 20 plus injections of Eyelea over the past 2 years and after an initial improvement things have gone down hill. My sight has got worse despite the injections and I have various problems with my reaction to iodine and corneal abrasions etc. I had a tantrum at my last appointment and finally got to see a consultant who raised the question of switching. I would be very grateful for any feedback.

[Comms Macular Society]

us02web.zoom.us/meeting/reg... Macular Society is running a webinar this evening on BEOVU. Register via the link above.

[Hrosie in reply to Comms]

Could the Macular Society put some information on this site for those of us who are not able to take part in the Webinar (whatever that is?) ? Many thanks.

[Comms Macular Society in reply to Hrosie]

BEOVU is a new treatment that works in a similar way to the existing drugs but is designed to have a longer-lasting effect - up to 12 weeks. There are some concerns about the side-effects, particularly inflammation after the injections so some clinicians are introducing it only slowly. If you want to know if it might be suitable for you, the best person to speak to is your ophthalmologist. The webinar is just an online lecture on Zoom. It’s very easy to join - our advice line can talk you through it 0300 30 30 111. You will also be able to see it after the event - we’ll post on our website in a day or two and that’ll just be a YouTube video.

[Hrosie in reply to Comms]

Thank you for your reply.

[fed12]

Dear Furryfiends, Sorry I have no feedback re. Beovu. Do the Macular Society know? Iodine is a great culprit for bad reactions, (I've struck up a compromise with my consultant, 1/2 strength, which mercifully is OK for me): and sadly enough, having a tantrum is sometimes the only way to get good treatment. I am a huge believer in the written word. I initially had great problems, which many others shared, with getting injections on the NHS on time, (i.e. every 4 to 6 weeks). I had to get help from PALS, the Macular Society, (Helpline 0300 3030 11), my MP and GP. (Yes! Really). The problem was "solved" initially by tacking me onto the end of the clinic list, which meant I had to wait, (from the time we all had to arrive, packed in like sardines), some times 4 hours to get my injection. Now many more clinics have been organised.

This was because of an extraordinary system whereby the consultant went round everyone in clinic, before she/he went into theatre, to yet again obtain their consent.

Mercifully with the advent of Covid, this archaen practice has had to stop. Now we have proper appointments for injections, with good spacing and minimal wait. Pity there had to be a pandemic to achieve this.

I don't know why, but Ophthalmology seems to be the Cinderella of the NHS. Years ago in the Midlands I had to throw a massive tantrum to get my 4 year old son seen. He had hung a coat hanger in his eye. I couldn't get anyone to see him, but eventually we were, after I'd been warned "if ever you behave like that again I will have you removed by security, and you will never get treatment for here". But, it wasn't just a panicking mother. My son was kept in for observation. He was fine in the end.

So when I read your share that "I had a tantrum", I thoroughly identified!!!!

There was very interesting article written by Laura Donnelly Health Editor of the D. Telegraph "Hundreds go blind while waiting for NHS treatment lists"...(7/6/18)

I can identify here too; my cataract op. for my good eye was cancelled twice, but this was because of Covid. I did feel as if I was going blind. I have had it done now, and feel like St. Paul on the Road to Damascus.

Please don't get me wrong! I am hugely grateful for all the free treatment and care we get on the NHS; but sometimes it's an exhausting fight!

Good luck Furryfiends, tell us how you get: sending you a hug xx

[Shimano]

I posted a reply to you with info on beovu. Hope you can find it. I get lost in the strings. Cheers.

[Annsandra13]

Hi 3 furryfiends, I have just had my first consultants appointment and review n Monday, I don’t think he likes me very much because I ask lots of questions, I have a long history with him because of contracting Endophthalmitis where he was in fact very god at the time when I was so poorly, I am so grateful for the care received but he now wants me to be assessed and get out as quickly as possible.

However I did ask him about Beovu and he said there were poor results with 1 in 10 patients having sight problems following injections and said it was better to stay on Eyelea, so it is early days and my clinic will not be fearing it.Like everyone it would be great to have 12 weeks between injections so we will have to watch the research and data.

I hope this helps.

Best wishes to you and all our friends in our community.

Love Ann x