Anti VEGF injections

[Koalajane]

I am having injections into my right eye every 4 weeks. My next appointment came yesterday and is actually 6 weeks since the last injection. Will 6 weeks be okay or should I try to change it? Many thanks for your advice

Jane

[springcross]

Hi Koalajane. You don't say exactly what you have been diagnosed with. I have wet AMD and was originally receiving 4-weekly injections. I once had my next appointment letter but instead of 4 weeks later, it was for five weeks but the others after that were, again, 4 weeks. I think it depends on how many appointments they have to find. Eventually, as I improved, my appointments became six weeks. Maybe your condition has improved so you may be given six weekly intervals between injections, but if this is the case, then you should have been notified about this from your opthamologist. You could try ringing the number on the appointment letter and asking them or wait until the appointment and ask the opthamologist. All the best. By the way, I assume you are in Oz?

[Koalajane in reply to springcross]

Hi I am in UK and have been diagnosed with macular oedema and my opthamologist said 4 weeks but the date on the appointment letter was 6 weeks. I will have to ring appointments. I had to do this for the last one as my appointment was in 5 weeks which I thought would be okay and then got a letter cancelling it and saying it was in 4 more weeks (which then made it 9 weeks since the last one). I don't think the appointments office are in touch with what 4 weekly appointments mean! I just wondered if it would be a problem for my eye if I left it at 6 weeks but will contact appointments tomorrow.

[springcross in reply to Koalajane]

Hi Koalajane. In that case, I would definitely ring the appointments number and explain what you have been told. I honestly don't know how this will affect your treatment. Also, I think I would probably ring the Macular.org number and ask their advice, explain what you have posted here - Helpline 0300 3030 111 ( macularsociety.org). All the best.

[Mrdg in reply to Koalajane]

I am supposed to have monthly Eylea injections but was told they are not doing it monthly ATM, so my appointment is in 6 weeks. I’m in North Wales UK.

[Hidden]

Hi, my appointments office often had the same trouble! A combination of too many patients not enough injectors & a lack of understanding of the potential impact.

For myself ( have Mac oedema too) I have so far always recovered from any slight delay in the schedule but would definitely ring if it was more than two weeks ( or earlier if I felt the amsler was showing deterioration).

Unfortunately we have to be our own advocates. Good luck going forwards.

[FireDrake]

hi

There have been many times when I have had to wait for more than 4 weeks. the recommended period is 4 weeks but if your sight has improved the period will be increased Often the clinics struggle to find timely appointments You could ring your consultant's secretary and ask why there is this delay - I have done this in the past and it was effective

Keep a diary of your appointments and consultations

good luck

[maryparry]

Eyelea has a regimen of ...the first 3 injections are 4 weeks apart, then move to six weeks after that. If at 6 weeks no fluid is foun d then they may decide to check in 8 weeks etc. Th e main thing is to let them kinow of any change that might occur.

[alh32]

Hi Koalajane I have been having eyelea injections for 2 years. Started at 4 week intervals for 3 of them then 8 week intervals for the rest of the first year. The intervals were gradually increased until it seems that 12 week intervals are the optimum. I have an OCT scan before each appointment so the consultant can decide on injection frequency. I had gone 13 weeks between injections the last time due to Christmas and the New Year and he detected a smidgen of a leak and so reverted to 12 weeks. For background I am a 66 year old male living in Northern Ireland and diagnosed with macular degeneration. Best regards Andrew

[Koalajane]

Thanks for that. I know mine was supposed to be 4 weeks as the person who did the injection said they would see me in 4 weeks as I left. I have spoken to the consultants secretary who said the extra 2 weeks would not be a problem but my name is down if there should be a cancellation.

[alh32 in reply to Koalajane]

I don't think there will be a problem. I waited 5 weeks for my 3rd injection as the consultant was on holiday. For info I noticed a massive improvement in my eye after the second injection.

[Koalajane in reply to alh32]

There was improvement after the first one but just had my fourth and they said there was still some fluid

[alh32 in reply to Koalajane]

Hopefully the improvement will continue. My eyesight in my left eye will never be 100 per cent but I'm grateful for what I have. Best wishes for your future treatment.

[Hidden]

I would never trust any Central Appointments “system”. They have let me down on innumerable occasions in the past. The are not “front line” and have little or no concept of urgency.

Definitely, ring the clinic and ask for the 4 week appointment.

[Koalajane in reply to Hidden]

I rang the consultants secretary who told me an extra 13 days would not be a problem, she had put my appointment forward earlier when it was a 9 week gap. She did say that if I thought it was getting worse to contact her.

[Hidden]

Well, she might be correct and I sincerely hope she is but she is not a patient, it is a gamble.

I have had 80 injections and have found that running just a few days over- several times as the retinologist played around with dates, my vision deteriorated such that it took 2-3 injections before it got back to my norm.

There is no guarantee that the anti-VEGF will kick back in.

[Koalajane in reply to Hidden]

If I feel it is getting worse I will ring them but in the meantime I will hope for a cancellation. There is not a lot more that I can do.