Reality check

[2468G]

Hello

Just arrived home from clinic after 6th Eylea injection. I am on 'As and when' and a slight leak was discovered at a scan 4 weeks ago.

I was pretty relaxed as the last 3 injections were a walk in the park and I was beginning to think I had imagined how painful the first two were. Obviously I hadnt.

All staff as usual were lovely and caring but for some reason the injection was very uncomfortable today. There was a little bleed and my eye is blood shot. I can see where the needle went in.

For the first time I had to sit in the canteen and have a cuppa before I felt I could travel home. While I was sat there I could see two blobs of what i presume to be blood bobbing about but that has gone now.

My eye feels very dry and very sore but I'm sure it will be fine by tomoro. Has to be done. It goes to show it can be a different experience every time.

2468G

[Hidden]

You are not kidding! It is most unnerving when you don't know who the injector is going to be and what to expect because each time is different.

Hope your eye feels better tomorrow. Mine usually does. Big hug!

[2468G in reply to Hidden]

Thanks ayayay, Still achey and scratchy at present , but I'm sure you are right and I will be fine tomoro. Enjoy your weekend. 2468G

[Hidden]

Another hug x the variety of experience is hard to deal with sometimes!.

Use sterile soothing drops, they always help me. I found any obvious bleed after inj the eye hurts a bit more and my doc says it will. At least it isn't the kind to worry about. Best wishes going forward.

[2468G in reply to Hidden]

Thanks eyesright. Will get some drops for next time, just in case. Out of 6 injections, I have now had 3 that were fine and 3 that were uncomfortable. 50/50 chance next time will be fine I guess. Appreciate the kind response.

[Ayralin]

Hi!

I have the same doctor inject every time. And each time is a little different in discomfort. The one I had last week was a bit more uncomfortable - I was the last appointment before their lunch and I had: verbal questions, vision exam, eye dilating, pressure measurement, eye scan, doctor chat, eye numbing, injection, pressure recheck, and out the door - in a record 35 MINUTES!! As I said - more uncomfortable, likely due to the rush!

The dark "blobs" you saw are air bubbles from the air in the syringe. They try to eject all they can beforehand. [being a nurse I know that can be hard depending on viscosity of the medicine.] Within about 24 hours the air will absorb.

I'm so glad we can share our experiences - together we can face this.

Linda

[2468G in reply to Ayralin]

Hi Linda.

Think my reply may be below.

2468G

[2468G]

Hi Linda. Thanks for the information. I didn't realise it was air. It disappeared fairly quickly.

You certainly had an intense 35 minutes. I wouldn't like to think my injections were being rushed.

I agree, it is good to share our experiences on here.

Best wishes to you.

[pinkperfection]

Hi there

Said I would let you know how I got on with scan this week after three eyele a injections. Not very encouraging as the fluid behind my eye has not gone. Also although cyst on my eye is slowly improving it is still not perfect so doctor instructed me how to clean my eyes because of the hbepharitis -easier said than done!! To add To my stress I am now overdue for next injection and the only person who can organise appointments is on leave until next week. Trying g to get appointments every 4 weeks is becoming a nightmare. Do you have this problem? Do hope things are going better for you.

pink perfection

[2468G]

I feel your anguish pinkperfection. It's unbearably stressful waiting for injections and results. I was told if there was no improvement after the first three injections they would try an alternative injection. Has this been mentioned to You?

I initially had good results after first four and went on to the "as and when" treatment but have had small leaks since which have been treated. My appointments have come through fairly regularily but One unfortunately was a bit delayed and I have a little more damage.

I find it astounding there is only one person booking appointments in your area. It is such a busy and frantic department, it can't possibly come to a standstill if someone goes on leave for a week or a fortnight. Imagine the backlog when they return. I wonder if it's worth contacting your consultants secretary and seeing if she can help. You must be very worried. I do feel for you.

I'm ok thanks. Another scan a week on Friday. Best wishes to you.

[pinkperfection in reply to 2468G]

Thanks 2468G unfortunately the eye clinic I go to doesn't seem to have a consultant who is overall in control. In fact I have seen quite a few different people since this all started. I shall certainly be on the phone on Monday to try and sort an appointment out. Up to now the poor woman who does this has been helpful so keep your fingers crossed for me.

Hope your scan shows good news for you.

[Hidden in reply to pinkperfection]

Hi pinkperfection, your clinic should have a manager whose role is to ensure things run smoothly. Not having admin cover is inexcusable given the potential impact of delays in treatment. Your hospital will have PALS ( contact details will be on your hospital website) and I recommend you send the clinic manager a letter ( email) to that effect via PALS. Sending via them ensures it wont get ignored!

I had cause to use them and it was effective. Sometimes we just have to advocate for ourselves as we are the ones left damaged when things go wrong. Good luck going forward x

Ps the gap between my 3 rd & 4 th eyelea was 8 weeks despite returning oedema and I'm sure my clinic said that was a routine gap as opposed to the 4 weeks with lucentis ( can't be sure though as clinics all seem to have differences).

[2468G]

Fingers well and truly crossed for you. I will let you know how I get on. So hoping I don't have any more fluid. Could do with an injection free October.