First injection

[Lizjim]

Injections

I was diagnosed with WMD a year ago since then I have had no treatment but 3 monthly eye scans . I had last scan 2 weeks ago and have just had a call to say I have to have a course of injections starting in 3 weeks . Is this normal to wait 3 weeks and how often are injections likely to be .I did try to ask lady who called but she said doctor would explain everything when I see him .

[Macular_1]

Hello Lizjim,

If you have diagnosed with wet AMD then you should not have to wait 3 weeks before your treatment starts.

Please see our essential care guide for wet AMD at the following link;

macularsociety.org/sites/de...

After initial diagnosis, treatment should start within 2 weeks.

As for how many injection you will need and the frequency, it will depend on the drug used. You should ask your consultant what your 'treatment regimen' is to be.

Initially, everyone will usually have one injection a month for the first 3 months.

Please see our booklet about 'treatments' at the following link;

macularsociety.org/sites/de...

Best wishes

Macular Society

[Hidden]

Hi lizjim, the Mac Soc info is very good. I would just add that you should push to be seen sooner. It has already been 2 weeks since treatment was decided. You can ring your clinic and quote the Mac Soc info .in support of your case.

I'm afraid we often have to speak up for ourselves.

One thing I'm confused about is you say initial wetmd diagnosis made a year ago - seems strange no treatment then. Maybe it was drymd they diagnosed now turned wet?

If they haven't given you one download and print an Amsler grid to self monitor your sight .

After your loading dose of 3 inj - if it worsens that's time to ring your clinic.

Re the inj - they work for most folk to stabilize the condition. It's scary at first but not as bad as you may fear and shouldn't hurt. I watched a u tube video so I'd know what was going to happen - the patient didn't flinch which helped my fear .

Take 2 paracetamol a couple of hours before, hold the nurse's hand, ask them to rinse very well after as some are sensitive to the iodine they cleanse eye with, and use sterile soothing drops at home if any discomfort ( but pain should always be reported to clinic, unlikely though).

Best wishes going forward. This forum is a great place to share experiences and ask questions - you are not alone.

[RP1944]

Hi Lizjim. Usually you start with a course of three injections at monthly intervals, then more injections as needed. I've had 12 over three years. It's an ongoing thing once started. Not enjoyable but if it saves our sight it's worth putting up with.

[Lizjim in reply to RP1944]

Thanks for information ,its reassuring to know we are not alone .

[Hidden]

Hi Lizjim. The fact that you have lasted a year without treatment sounds promising. There are different intensities of the disease, from the slowly progressing to the aggressive. It varies from person to person. I was not given treatment after being first being diagnosed, but a month later my eyesight had deteriorated from 20/40 to 20/63 and treatment was given 2 weeks later. The consultant told me that NICE stipulated that eyesight must be worse than 20/40 before treatment is started. And even at the loss of some sight he was tempted to wait yet another 4 weeks. Perhaps it is a case of postcode-lottery.

Anyway, after 5 injections the AMD had dried up and I had a 5 months break from treatment. Since then the leakage returned and I had to start treatment again, first at 6 weeks intervals, then at 8 weeks and now at 2 months. There is no hard and fast rule how often you need the injections. So it seems my condition is well under control. It all depends on how your eye/s responds to treatment.

Please, do not worry too much, although at the beginning it easier said than done. We have all been there. Be guided by your medical team.

Good luck!

[Lizjim in reply to Hidden]

Thanks for reply ,I have been so lucky not to have needed treatment before now .I admit I was shocked as I am not aware of any deterioration in my sight .I am apprehensive about my first injection ,but I think its fear of the unknown ,thanks again for your support .