Had first Lucentis injection nearly 5 weeks ago & waiting for appointment again. No Eye clinics this week due to Audit so will be next week.

[cormorin]

Wondering if visual symptoms clearing a bit after the injection then returning a week or so before next injection is due is 'normal'?

Had 'halo' light around dark spot & wriggling very small dark dots before the injection, halo & small dots disappeared & dark spot went lighter.

Now they have returned & spot is darker.

I know we are all different in our symptoms but any ideas would be very welcome please?

Thanks if anyone can help.

Cormorin

[andy1955 Macular Society]

Hi Cormorin,

Whilst I cannot comment about your actual experiences after your injection, it is concerning that you are not getting your follow up treatment in good time.

I don't think that an audit is a good an excuse to postpone a clinic and let patient's sight deteriorate unnecessarily. You must chase up the hospital to get a prompt follow up appointment.

Royal College of Ophthalmology guidelines recommend regular 4 weekly monitoring and treatment for wet macular degeneration. We know hospital macular units are struggling to cope due to the volume of patients, but this seems very poor.

Whilst it would be inappropriate to name and shame a particular hospital on the forum, you may wish to discuss this further with the Macular Society helpline; 0300 30 30 111.

Best wishes

Helpline

Macular Society

[cormorin in reply to andy1955]

Thanks for your reply. I have now got an appointment for this tuesday so hopefully will get a further injection as symptoms gradually creeping back.

I do not expect miracles but will be happy if the injections hold the deterioration back as long as possible.

Cannot fault the staff & the treatment just the red tape & difficulty getting through on the phone to Clinic.

Had a bit of trouble getting around the site to see if there were any replies

had no trouble before when we had links to replies.

Regards,

Cormorin

[muddlepud in reply to cormorin]

Hello Cormorin,

It's Muddlepud back. I replied to the last contact of your old correspondence: where you asked how I was but, after that, it seemed you disappeared. Glad to have found you again. I think the muddle has been because of the new site problems. Well, I hope so and that it wasn't me!

Hope to hear how you get on this Tuesday.

Cheers, Muddlepud

[cormorin in reply to muddlepud]

Hi Muddlepud,

Glad to hear from you again. Have had trouble with the site too but seems ok now.

Had second Lucentis injection yesterday. Saw a different Doctor due to the closure of the Clinic last week.

She was very nice & friendly telling more of what was happening, maybe as she did not have so many patients to see. Only thing that was a bit 'off' was that instead of giving the numbing drops a few minutes before the rest of the drops, all were given at once.

Then she said look up at her and delivered the injection just under the pupil. Due to the drops not being very effective it really hurt & the flashing curtain of lights was scary.

Doctor was concerned & said to go & wait outside her room for a few minutes & she would come & check to see if there was a problem.

All she found was 2 air bubbles so came home to see what happened.

This morning the bubbles were fading, soreness was less & mist gradually going so all seems ok now, fingers crossed.

She did say that each time can be different so not to panic & worry too much so trying to take her advice.

How are you doing now? Are you still having treatment? My son found an article on BBC news site talking about a new treatment being trialled that sounds promising even though 5 years away.

Time for more drops so bye for now,

Regards Cormorin

[muddlepud in reply to cormorin]

Hello Cormorin,

Seems that this last experience has been both a little worse and a little better for you. I was sorry to hear about the pain you experienced with the injection. I reckon your doctor must have forgotten to give the numbing process time. Normally, the doctors giving me injections will wait for quite a while before starting, after the numbing process, even chatting with the nurse and sometimes pressing my eyeball [don't know why but it seems to be part of the process]. I suppose it is to see if the eye is 'ready' or something. Still, you do seem to have had a quicker recovery all told, which is good, isn't it?

It is very true that each injection I experience is always a little different, though not greatly so. Sometimes my eye will sting with too much iodine [I presume] and sometimes the injection hurts a little more than usual.

When I saw the Consultant after my last set of injections and it was obvious that I still had bleeding, I thought I would not be given any more. But I am now having a further three [that will be nine in all]. I have already had one of these. Everything was as I expected until the injection - and that one did hurt! I think it was because I moved a little. It hurt all the way home but eased quite quickly afterwards. The two black 'buttons' that I always see swinging below my chin actually stayed with me for 36 hours rather than the usual 24, so that was different too.

There seems to be some promising work being done for people with Macular Degeneration at the moment. I don't know what new treatment was on the BBC news site but the receptionist at my Opticians gave me a newspaper article about some revolutionary glasses which help MD sufferers see more clearly. I think the pipeline they are in, though, is a very long one. Who knows when they will become a reality. Still, things are looking up!

Let me know how you are getting on from time to time. I hope you continue to feel better after this last injection than you did after your first one.

Best wishes,

Muddlepud

[cormorin in reply to muddlepud]

Hello again Muddlepud,

Hoping this is third time lucky as each time i've started answering you i have had interruptions, so here we go again.

Having a better time so far than last perhaps as i have more idea of what to expect now.

Havent seen the same improvements so far as i did last time but early days yet.

Found the article on BBC News that my son sent me. If you want to read it the best way is to go to BBC News, then Health then type in search bar stem cell research.

The link Barry sent me wouldnt work when i tried but going through the site did.

Its about a promising animal study in research into curing blindness with stem cells.

Long way off right now but could be sooner with luck so fingers crossed for that & all the other trials.

Take care & chat again soon,

Regards, Cormorin.