Ongoing care

[PFAS]

I was diagnosed with wet AMD in April 2018. I then had 3 Lucentis injections from then until July 2018. I have had checks since then and the time in between these appointments has increased. Fortunately the vision has remained stable and I have to say is good. (I still drive)

Today I went for a check and was told still no change and that I would be seen again in 3 to 4 months. The consultant then said that if this continued I would be discharged! I assumed I would be monitored and under the care of my local hospital for as long as I had the condition. I would also say that this hospital has no official protocol if problems arise between appointments. I have been told see your doctor, go to A&E or call us and we'll try and see you earlier! Your comments would be much appreciated.

[Tetrazzini]

With my first eye I was the same - 5 injections then discharged because they could do nothing more for me because of permanent scarring. this eye has remained stable for 5 years and I could continue to drive with one good eye.

Sadly, the second eye went 18 months ago and I had to stop driving. this time I got six injections which stabilised mt sight although I became registered as sight impaired. I got monitored every month for 2/3 months, was still stable, and am now checked out every two months in case can be done.

I do have a number to phone if I experience any sudden problems.

I hope this helps and wish you good lock. John.

[PFAS in reply to Tetrazzini]

Thank you for your reply Tetrazzini. I suppose I was taken by surprise at the suggestion of being discharged! On my previous appointment I was seen by a locum and she told me that in the first year I should have had 7 injections. (I have assumed she was from a different Hospital Trust and therefore a different regime/treatment) I understand there are 3 regimes for Lucentis but don't know which I'm on, in fact I've never been given any or much info at all, unless I asked. Unbelievable that there is no consistency in macular treatment. Another rant! Thanks again for the reply.

[tallyho]

This sounds like standard practice to me. They fulfilled the criteria of treating your AMD with the loading injections straight away by starting you with the 3 Lucentis. They seemed to have done the job they were intended for and have given you follow up appointments. The fact that they have said they will discharge you if your condition is stable seems very reasonable especially as your sight has remained good enough that you can still drive. I would be happy with that standard of care. They will discharge you out of the HES and back to your GP. If there are further problems you would be seen quite quickly I would expect so I would not be too concerned. Hope all goes well for you.

[PFAS in reply to tallyho]

Thank you Tallyho. I'm a born worrier so possibly still in panic mode even after 12 months! Your reply makes me feel more confident. Onwards and upwards!

[RosMacularSociety Partner]

Dear PFAS,

The function of the injections for wet AMD is to suppress the abnormal blood vessels developing behind the retina, stabilise the eye, maintain vision and prevent further damage. Therefore, if the eye becomes stable for a period of time, there will be no function for the injections. However, it is possible that the wet AMD may become active again, in which case further injections would be needed. During these periods of stability, it is important to check an Amsler grid weekly. This will help gauge if there are any changes to the eye, which may indicate if more injections are needed. If any changes are identified, then it is important that the eye clinic is contacted straight away.

How far apart Lucentis injections are is partly determined by which of the 3 available treatment regimens that an individual is placed on. It is worth checking which one you are on. Please contact us if you would like us to send you an outline of them.

This is a link to the NICE quality standards published in February 2019, regarding monitoring:

nice.org.uk/guidance/qs180/...

Kind regards,

Macular Society Advice and Information Service

0300 3030 111 (9am – 5pm Monday to Friday)

[e-mail]

[Whitegoose]

Hi PFAS, I’m sure it’s the luck of the draw with where you live and what hospital you deal with.

[PFAS in reply to Whitegoose]

Hi Whitegoose. Yes exactly. After reading the comments, concerns and replies on this forum for the past year, it seems clear to me that we are all treated differently depending on where we live and which hospital Trust is involved.