Difference after injection between Lucenti... - Macular Society

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Difference after injection between Lucentis & Eyelea

Sijslws profile image
16 Replies

After having Lucentis injections monthly for most of the last 2 to 3 years it was felt that a switch to Eyelea might help. Had the second set of injections a couple of days ago and I feel that my eyesight is slightly worse after the injections which is not something I felt with the Lucentis injections. Is this usual in the first few days after the injection. I have diabetic macular Oedema.

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Sijslws profile image
Sijslws
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16 Replies
MikeG1944 profile image
MikeG1944

Hi Sijslws; I have had Eylea injections for 2 years now and I find they need a day or two to clear and get back to normal and then 3 or 4 weeks later notice a slight improvement which tails off a fraction by the time the next is due. But I think they may affect everyone differently.

Sijslws profile image
Sijslws in reply toMikeG1944

Thanks for that Mike. Whilst I was not getting into overworried mode the situation was making me wonder particularly as for some reason they do not scan the back of the eyes on each visit when it is an Eyelea injection but do when it is a Lucentis injection.

Akun

MikeG1944 profile image
MikeG1944 in reply toSijslws

I'm not sure where you go for your injections but where I go, Kings Lynn, Norfolk, they do the injections either every 8 weeks or every 12 weeks and do a scan (OCT) 2 weeks before each injection when having Eylea.

Sijslws profile image
Sijslws in reply toMikeG1944

I go to the Eye Unit at Shoreham by Sea, West Sussex. Whilst I was having Lucentis injections I was attending the Injection Clinic on a monthly basis and the routine was eye test, scan of back of eyes, see Doctor who would decide whether both eyes, one eye, or none and then have whatever injection (s) decided upon. The system had improved on moving the Eye Clinic from Worthing Hospital to Shoreham by Sea

Previously the reviewing of treatment progress was operated on a separate appointment list to the actual injection appointment list so after a sequence of say 4 monthly injections you would get a review appointment but the system of the names going from one list to the other was not very reliable Now it is all done within the one appointment.

Alun

in reply toSijslws

Interesting, my clinic in Wiltshire did the opposite. It means they get through more inj per session but as you say, not always reliable appt booking and there's a longer wait for the pt between oct scan/ review with dr and any necessary treatment.

Re the vision after eyelea, yes I had the same experience as mikeg.

Re the scanning- my doc said they wait after each set of 3 because they cant tell if any improvement is solely due to the active action of the inj or if the eye has actually responded and the change is ' real'. When I moved to single inj there was always a pre scan to decide if inj needed.

Sijslws profile image
Sijslws in reply to

There does seem to be a fluctuation in staffing in my local NHS Eye Clinic. Went through a period where the injections were being done by a Specialist Nurse with an ordinary nurse assisting but the last few months it seems to be back to the Doctor doing the injections which means that the Doctor will examine a sequence of 3 patients and then do the injections for the three patients before repeating the process for another 3 patients.

Retired130 profile image
Retired130 in reply toSijslws

I am in the USA & have had Avastin injections for 2 years & then switched to Eylea for the past 2 1/2 years for my wet MD in my right eye. My left eye has dry MD so no shot there. I have been given a scan of the back of my right eye at each visit for an injection. They do the scan & then the Retina specialist goes over it with me to show me any improvement or deterioration & then I get the Eylea injection. The same procedure also was done when I was getting the monthly Avastin injections. As for my left eye with the dry MD, my Retina Specialist also does a scan of the back of the eye every 3rd visit, just to check that the dry MD has not turned to wet.

I do not understand why your doctor would not do an eye scan before every injection & then go over the scan pictures to explain any improvement or degeneration or if it is just holding steady. Maybe you should ask them to do the scan at each visit or maybe it has something to do with your insurance coverage.

Sijslws profile image
Sijslws in reply toRetired130

Hi Retired130

Am in UK and attending my local NHS Eye Clinic so nothing to do with insurance level. Whilst having Lucentis injections I was having a scan of the back of my eyes on each monthly visit and I was surprised that they were not doing the same on my being switched to Eyelea injections.

Alun

rosyG profile image
rosyG in reply toSijslws

I have Eyelea and always have a scan- I think they have slipped up here

Jihm profile image
Jihm in reply toRetired130

I am also in the USA, and I get a scan of both eyes on each visit. Like yourself I received Avastin shots (in my right eye only - left is dry) for years before I asked them to switch to Eylea. The reason I wanted to switch was that the Avastin shots had given me a silicon bubble. Studies show that the syringes with the preloaded Avastin

are more likely to get silicon lubricant into the eye because of how they are constructed (with a stick-on needle held by friction). This is apparently not generally believed in the USA, but switching to Eylea avoids the issue. The insurance complications with the high cost of Eylea, in the USA can be an annoying hassle though.

Retired130 profile image
Retired130 in reply toJihm

We both seem to have had the same situations, except in my case, my Retina specialist switched to Eylea after the Avastin stopped working. So far, the Eylea is keeping me stable. Before the wet AMD my vision was corrected to 20/20 with glasses. Now, the Eylea is keeping me stable at 20/40 with glasses, which is the lowest I can have and still drive, but because of some distortion, I have not driven at all in about 18 months (my choice).

Since starting Eylea, I get the shot every 6 to 7 weeks. About every 5 months the Retina doctor tried to extend the interval, but the best I have been able to do after several tries is 8 weeks. Every time we tried, at 9 weeks the bleed returns & the vision deteriorates to 20/70, so we had to go back to 4 weeks & then 6 to 7 weeks. The Retina doctor does not want to try to go beyond 8 weeks anymore, as he is afraid in a future attempt, it may deteriorate & not return to 20/40. He said even though some people eventually wind up going 3 to 6 months between Eylea shots, I am not one of those fortunate ones, so 6 to 7 weeks (with 8 weeks max in a scheduling conflict) is where I will be for the rest of my life.

I am lucky in that I had no insurance problems switching from Advastin to Eylea - maybe because in my situation it was a necessity as the Avastin totally stopped working. Once a year the doctor must submit a pre-authorization for the next year, but so far, it has always been approved. Also, because of my income, the doctor contacted "Eylea For You" & got me a grant that covers some of the cost my insurance does not pick up.

I never had to worry about the silicone problem, as for both Avastin & Eylea, my Retina Specialist loads his own non-silicone syringe from a tiny bottle of the medicine instead of using pre-loaded syringes.

Wishing you all the best that the Eylea keeps working & that new ways of controlling WMD will soon be discovered that can reduce the number of shots or maybe even eliminate them. I have read about a few things that are in the initial testing stages. Hopefully one of these will be perfected & approved.

Jihm profile image
Jihm in reply toRetired130

Thanks for your thoughtful reply. The longest I have ever gone between shots is 8 weeks. At present I am at 6 weeks, but that could change either way as we both know. I wish all macula docs here would fill their own (safer) syringes with Avastin, when using that drug.

But this does not seem to be the case. However, my regular doc gives excellent shots.

He is just very, very good at the actual injection. Very seldom do I have anything to complain about after receiving a shot . Other than the bubble I got from the silicon lube on the Avastin syringe, the same was true when Avastin was the medication I received. I have noticed no difference in the efficacy of Eylea and Avastin in my case, by the way. My vision is not as good as yours, but I still drive. I do not drive at night, however - my decision. I find it just too unpleasant, and possibly dangerous to drive at night. I too hope that science will eventually free us from these shots. All the best to you & yours!

Tessa83 profile image
Tessa83 in reply toRetired130

Well we don’t have insurance in uk because it is free but the treatment is the best ,and I get my reading tested then a scan then the consultant ,and depending on those results I may need an injection ,we are so fortunate to live here and not have to worry .

Retired130 profile image
Retired130 in reply toTessa83

Nothing is "free". If you are not paying anything for insurance coverage, the specialist visit, the scans, & the Eylea shots, then some taxpayers are paying for it.

In past posts on this site, people from the U.K. have stated the Eylea shots cost $3,000+ when converted to US currency.

PatMc50 profile image
PatMc50

I dont understand why all NHS hospitals dont follow the same procedure. I have had monthly injections of Eyelea for over 2yrs now (apart from a 3 mth stint on Lucentis last year. I have wet AMD in left eye and dry in right. I have only ever had scans on a 3 monthly basis at Sunderland eye hospital, which I don't feel is enough, as only 2mths ago, for the first time, scan showed an improvement.

Sijslws profile image
Sijslws in reply toPatMc50

My eyes were improving with the Lucentis injections to the point where they extended the period between visits to the clinic to several months. Unfortunately during this period my GP surgery changed my diabetes medication which meant that my blood sugar readings went up and at my next eye clinic appointment there had been a deterioration and I was put back on Lucentis injections. My right eye is virtually sorted but the left eye has been slower in improving hence the decision to switch to Eyelea. An additional problem is that I have cataracts developing in both eyes but the one in my left eye is more advanced and therefore I have very real difficulty in telling the extent to which vision problems in my left eye are down to the cataract and how much to the Macula Oedema. Problem is that they will not be doing anything about the cataract until the macular oedema problem has been cleared up.

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