Accounts of Personal Experiences
For information about this and other antiangiogenic drugs currently under study, see Antiangiogenic Drugs Are Stopping Neovascularization in Wet Macular Degeneration. For information about eye pain sometimes experienced as a result of intraocular injections, see Intraocular Injections and Eye Pain.
I would like to report the completion of my two year study with rhufab. Before the study I had bleeding off and on for 15 months. The prior three PDTs had only worked for short periods. I was one of 167 people across the US involved. This study used a combination of PDT plus rhufab. I was injected once a month (24) times. I had PDT at the start of the study and then three months later to stop bleeding vessels. After that I did not need PDT again. The flash photos were taken every three months. My acuity was checked in detail every month and the RS performed a predilation and post dilation examination before the injection. My acuity prior to entering was 20-80 in the study eye. My vision as of yesterday was 20-25. I have been extremely lucky so far. I go back next month for the final flash photos and blood work. How long my vision will last, no one knows. While it was difficult living around an injection every month, the results are worth the effort.
August 30, 2006:
I visited the study site Monday. The good news was my vision was 20-25 corrected and the non study eye was even better. The bad news was a small amount of blood is still hanging around in the side of the eye. Not bleeding, but still there. So injection number 27 and the worse one yet. The doc said as he took out the needle, “I hit a gusher.” I now have two pouches under my eye and super red eye. Usually, it takes about two or three days for it to clear, but this one will take a week at least. No pain, just looks like my wife punched me in the eye. I can live with it, for the results are what count, and I have been very lucky. No one should be afraid of the injections. Some are good, and a few are not.
March 18, 2007:
Had my 30th visit to the study site yesterday. Vision test (25 minutes) was good. After post and pre-dilation check by RS he looked long and hard at my eyes and past FA’s and said “no injection.” I felt short changed after so many. My wife says, “are you crazy, who wants an injection”. Both eyes dry at this time. Next visit in three months. Sixteen of us left at this site. I was told that four of us are doing very good and most of the others holding their own. I talked to one who has regressed and blames it on not receiving the injections once a month. Who knows what causes one person to respond well and another not to.
[My mother] had the second shot last week. Before they gave her the shot, they took pictures and the doctor said there was a “dramatic” change for the better, just from one shot of the Lucentis. She can not see any difference, but the pictures show that the Lucentis is working for her. When I asked him how many other of his patients showed the same positive results. He said they all have, across the board! Pretty amazing. I hope that it becomes available soon for everyone.
Well, I am finally into the Lucentis SAILOR trial — Part 2. I received my 1st Lucentis injection followed 10 minutes later with a pressure check. Other than seeing through a bit of a blur and having a floating black globule (which the technician said would go away), I was none the worse for wear!
I didn’t find too much difference with getting the Lucentis drug than in getting my previous 3 Macugens. This time the doctor made me look straight up, rather than off to the side. The technician’s swabbing and numbing was also in one fell swoop, over and over again, rather than spacing those q-tips with the numbing stuff a few minutes apart from each other. I don’t think I would’ve been upset about the “looking up” except that the fluorescent lights were directly overhead and those lights were more powerful, it seemed, than the needles. By the way, the Consent Form which I signed is a revision dated February 23, 2006. This revision contains the Part 2 of which I am a part: to be concluded at the earliest of either 30 days after FDA approval or September 30, 2006, whichever is earlier.
I have received 0.5 mg. of the Lucentis drug and will continue to receive 0.5 mg each 4 weeks until dry. I asked both the doctor and the SAILOR person to make a guess as to about how many injections it would take to dry up my eye. Individually, they both said 2 or 3. That is how long it has taken of all of their other SAILOR study patients. I certainly do have something to look forward to, don’t I?
Well, it took about 8 hours, but my blobby floater seems to be all gone. My vision is still a bit blurry, but certainly better than right after the injection. There has been absolutely no pain with this Lucentis injection, not even the grainy sand feel of the Macugen injections. My eye looks pretty horrible, however, but at age 67, I wasn’t going to be winning any beauty contests anyway!! If I wear red, it will pick up all the colors just swell!
April 16, 2006:
Good news today! My wet eye “has pretty well all dried up” according to Dr. Gonzalez. The numbers on my OCT went from 354 thickness last month down to 204 thickness this month. After looking into my eye, he said he found just a tiny bit of fluid left, and just for good measure, (per Protocol for SAILOR Lucentis Trial, Part 2), it was his decision to give me Lucentis #2 injection. He said he didn’t want a “3-month start-up” like he has seen in others who have “dried up” after only 1 Avastin. (Yes, he said Avastin.) He said that “You are one lucky girl…………” And boy! Don’t I know that!!!!
I have had 3 Macugen injections and now 2 Lucentis injections in the SAILOR Trial.
JUST ABOUT STABLE! I’M A HAPPY CAMPER!
Also, this injection itself went just fine…..didn’t feel much of anything. I have no floaty blobs this time, just a little tenderness in the eye 4 hours after the injection. The brightness of the dilation (even with 2 pair of sunglasses on) was more of a problem today with the immense bright sunlight in late afternoon. I’m glad the sun is going down for the day!
August 16, 2006:
Yesterday, the RS Visit included another brief eye test. Now at 20/25 in dry eye (not much difference from 20/20), and staying at 20/40 in wet eye. I was given an OCT (ocular coherence topography) which showed a tiny bleeding area away from the macula. Dr. Gonzalez additionally saw the bleed when looking directly into my eye. When I asked him if this was a “new bleed,” he responded that he would call it simply a recurrence of the 1st one. He said this was very small, has done no damage, and we are lucky to have the treatment drug to fix the problem. So I then received Injection #7 (Lucentis #4). My next appointment is in 6 weeks.
My injection was uneventful. In fact, I had only a small amount of noticeable blood this time. Out of 7 injections, I have had 3 “gushers” and 4 non-gushers. I went out to eat immediately after the injection and several hours later went to my Monday evening Chorus Rehearsal down in Texas. There was very little scratchiness this time…made me wonder whether he missed my eye!!! I had a curious thought that maybe, because of 6 previous injections, there are less blood vessels to rupture in my eyeball. I don’t know if this is true or not. Eye pressures before the injection were 14 in each eye; eye pressure 15 minutes after the injection in the injected eye was 28: normal so soon after the injection.
Maintaining 20/40 vision in my wet eye is a miracle because of the new drugs. Without those 7 injections, I probably would’ve had had to have 7 laser treatments, leaving 7 scarred areas. As it is, I am still able to drive and do everything I always did. Talk about a lucky person!!!
September 25, 2006:
Injection #8 went very smoothly……no pain, no fuss, no muss. This one was another non-gusher unless it reacts differently during the night. I don’t think so though. If it’s gonna be “a gusher,” I will usually know it very quickly with an eye that looks like I’ve been hit with a baseball bat! Tonight my eye is just a bit bloody in one tiny area — hardly anything! The anesthetic shot hurt a bit, come to think of it — that’s the shot before the Lucentis shot goes in. I told the Doctor “OW!” When I was finished, he always says the same thing — “you did good!” He’s a man of few words.
The best news I had at my exam was that my vision seems to have improved a tiny bit — I am at “close to 20/30” in the wet eye, and “close to 20/20” in the dry eye. I wonder if I have inadvertently memorized the Eye Chart after so many visits!
November 6, 2006:
I’m in the Stable Stable!!!!!! 1st time in one year that I have NOT received an injection because there is no blood/no leaking in my wet eye! My vision tested 20/25 in the dry eye and a SOLID 20/30 in the wet eye!
Today’s RS visit included pressure checks (12 dry; 10 wet), dilated eyes; OCT Test (ocular coherence topography), and Dr. Gonzalez looking into my eyes with the bright lights. Interestingly, he never says “injection.” He speaks of receiving “the drug” or not receiving “the drug.” And, believe it or not, I was in and out of the Office in a total of 50 minutes! This is a good day!!!!
December 13, 2006:
Well, my 9th shot in the eyeball (injection into my eye is too nice a phrase for today) is finished. I’m being a bit facetious because, about 6 hours later, the prickling/burning and black glob are almost gone. So that is a good thing. Dr. Gonzalez hit a gusher this time and nobody wants to look me directly into the eye yet. It’ll clear up within 5 days or so. Since the last time I had a black glob was Injection #1 and my last gusher was about Injection #5, and the last prickly/burning was perhaps Injection #2, I had become completely spoiled and had thought myself immunized to them! So much for feeling haughty!!! The aliens have put me back down to earth, I guess!
Although I had sprung a tiny leak (necessitating the first injection in 3 months), my vision actually improved. I tested a solid 20/30 in my wet eye and almost 20/20 (less 2 letters) in my dry eye. I was given both an OCT and the FA. The FA is what showed the tiny leak today along with Dr. Gonzalez spending 666 minutes with his bright light looking at the back of my eyeball. I’m exaggerating a trifle here!!! But you all know about those bright lights!
February 20, 2008:
Well, after 8 months of being stable, I’ve again developed another leak in my wet eye and will need 2 injections on Wednesday. Yes, two! For the past four or five weeks, my RS has been giving people both an injection of Lucentis AND an injection of dexamethazone, which was explained to me to be an anti-inflammatory drug. I was also giving the option of being sedated while receiving the two injections at the “surgery center next door” or getting the two injections in his office without sedation. I chose the sedation, which went just fine. It took about 2 hours from beginning to end, when I walked out with a slightly red eye, which was its usual blurry self after receiving an injection.
After waiting for about 1/2 hour at 6:45 AM, I was told to put on the gown and to wash my whole face….to remove ALL of the make-up which I had carefully applied at 5:15 AM. Eyebrows, lipstick, and everything! Horrors! NOBODY sees me without eyebrows, for heaven’s sakes! But, I did as I was told and was put into a cold bed with a blanket. They did the usual “vitals,” and got the IV started in my left hand. It took the technician forever to find the vein.
Then, while still not sedated, they did the usual dilation and numbing drops. Then I had to wait a while (as usual). Finally, they wheeled me out of that room into the OR room, where they (still not sedated) did the betadine iodine solution, which I said burned, after which they put more numbing solution into the eye. They then (still not sedated) put in the eye opening clip, which hurt. The technician then took it out and put it in again….still not sedated. FINALLY, the technician must’ve put in the phenatol and vercet, and the next thing I heard was “you’re finished now.” Afterwards, the technician said I answered a question as “fine and dandy, California brandy” (which I use frequently) and also said “Is that Dr. Gonzales?” — neither of which do I recall saying.
So — I did not see the 2 injections going into my eye, that I recall. My eye has only a small amount of red under the eye…not much to indicate that I received two injections. Dr. Gonzales must’ve been having a good day! Some of my previous 12 injections hit gushers!
All in all, the sedation experience was OK. Not great, just OK. In fact, I have already decided that it seems to me personally to be a bit more cumbersome than just sitting in the office chair and getting the prep work done and receiving two injections in the usual way.
So — my next injections will be without sedation. It’s really easier and faster.
November 30, 2009:
I got another 2 injections today (Lucentis and Dexamethazone), which now total somewhere between 25-30 injections. Today’s gave me a big black blob at the bottom of my vision which, from having had this a couple of other times, will take up to 2 days to dissipate.
Today’s visit was an 8-week visit. My next visit is scheduled for 10 weeks. By giving the Dex along with the Lucentis, my RS believes he can begin extending visits. I tried to remind him that he has done this 2 times before, and my visits didn’t really get extended at all. And the 10-week “try” was also because they used the brand new OCT/FA Spectralis machine on me today. It provided the RS with wonderful OCT pictures, and a 1-minute video of the vessels beginning when the dye began to affect them from the FA — all using the same machine.
This is my 3rd Lucentis injection in a row where I requested and received only Zymar — no Betadyne. I see the black glob, but I have had no pain whatsoever in my eye. The Betadyne is, of course, the gold standard in cleansing solutions, but I am willing to be pain-free and take my chances! It is absolutely wonderful to not have even the slightest amount of pain. Just the usual blurriness from the dilation and the medicine, which will probably last the rest of today. My vision is 20/20 in my dry eye and 20/25 in my wet eye — 4 years after my 10/2005 diagnosis.
April 25, 2013:
Just wanted to update that I am continuing to get 2 injections (1 in each eye) every 9 weeks and am continuing to stay dry with this schedule. I am continuing to receive Lucentis, and continue to read at 20/40 in each eye, although it is getting a bit more difficult each time I go. I received my usual OCT test on the Spectralis Machine. It showed no leaking blood vessels. Stable is good!
It is now 7-1/2 years since my AMD diagnosis in both eyes with Wet AMD in my right eye. My left eye followed about 4 years later, and this is why I get injections in both eyes.
My Retina Specialist puts up with my idiosyncracies, which include:
1) No anesthetic injection. Other patients get these prior to the drug of choice.
2) No Betadine (only antibiotic drops).
3) The least dosage of dilation drops (0.25% maybe?).
4) No numbing gel, only numbing drops.
5) Both injections at the same time.
Today, I ended up with 1 black floating glob, which I know will disappear tomorrow or the next day. Last time I ended up with 2 black floating globs, 1 in each eye. Yuck!
The downside of my today’s appointment was the 3-hour visit…from start to finish! Sometimes this happens. Now on to better things until I return again in 9 weeks.
October 18, 2013
I have a leak. My RS wanted me to go 16 weeks/2 days before my next injections (1 in each eye) because I had been dry for so very long (maybe 5 or 6 years). My usual protocol was 8 weeks between injections. I did see him at 8 week…thinking I would get my usual injections. But he said he wanted to try another 8 weeks because I was doing so well!
Well, obviously, that was too long! I carefully watched my amsler grid each and every day and saw no changes.
So this morning after my OCT test, the RS saw the leak and only then did he say he also wanted an FA (fluorescein angiogram). So I had to get back in “the line”, wait, and finally get the FA. Then back in “the line” to see the RS for the second time. This 2nd time was 4 hours after entering the Clinic! I was actually more upset at the excessive time involvement than having a new leak.
My new leak was “just beginning,” he said. And now I am back to injections every 6 weeks x 3 times.
I was diagnosed with wet AMD in my right eye in October 2005 — 8 years ago this month. Then about 4 years later, my left eye turned slightly wet………..which is why I get Lucentis injections in both eyes each time.
By this afternoon, I am just fine after my normal nap. No blurriness, no black balls, no gushers.
And on we mush………
July 19, 2014
It will be 9 years in October that I began getting injections. Today my vision checked out at 20/30 in 1st eye and 20/40 in 2nd eye. It was cloudy outside and I think the transition phase from outer waiting room into small examining room was not very great…therefore, my eyes transitioned quickly. Sometimes I test out at 20/40 and 20/50.
The geographic atrophy of my 2nd eye is pretty swirly all over the place. However, at dead center it is clear…..allowing the 20/40 reading. It’s only a matter of time until the swirliness swirls right into the center, but I’ll take the clear dead center as long as it lasts!
October 30, 2015
I’m just checkin’ in because yesterday’s injections makes this 10 full years since my wet age-related macular degeneration (Wet AMD) diagnosis. It was October 2005 when my 1st eye was diagnosed as wet and I got a Macugen Injection. The following month I was entered into a clinical trial for Lucentis……the SAILOR trial, as I recall. It ended in July 2006 when the FDA actually approved Lucentis. That wet eye (my right eye) eye-tested yesterday at 20/30………..amazing, right? Lots of injections into that poor little eye.
Then about 4-1/2 years later or so, my 2nd eye went wet so the injections started in that eye also. That eye also developed some bad geographic atrophy (advanced stage of Dry AMD), but the injections have kept it from ever going wet again. Because of the atrophy, that eye barely tested out at 20/50 yesterday……lots of distortion in that poor little left eye.
20/30 and 20/50 — 10 years later!!!! Who would have thought, huh? People who were diagnosed even 11 years ago were not so lucky, unless they were in an earlier clinical trial. Those people got the old-fashioned laser treatments and probably have a lot of scarred eyes.
I am soooooooooooo lucky! I just wanted everyone to know!
January 14, 2017
My eyes have been pretty stable until about 3 months ago when the Geographic Atrophy of my 2nd eye brought my previously 20/50 vision up to 20/150. My good 1st eye had been varying between 20-30 and 20-40. For sure, I thought that (especially with my 2nd eye), I was on my way to “peripheral vision only.” But then I had my 10-week injections appointment for both eyes this past Wednesday, 1/11/17. Surprise! My 2nd eye (the one with pretty bad geographic atrophy) measured 20/70; my better eye measured 20/25.
My Retina Specialist was not very surprised to see that my vision had improved. He said that the injections often do that, helping us to gain a line or two of vision, even many years after receiving injections! In my case, I have been receiving the same Lucentis injections since July 2005. So, nobody should ever give up on thinking that their vision might improve. Things happen out of the clear blue sky!
I’m at the 2 1/2 week mark with my 2nd Lucentis injection. So far, don’t note improvement. At my checkup before the second injection, the nurse who did my visual exam and I worked very hard to get a 20/70 instead of the 20/80 before any Lucentis. I mean we worked hard at it, she was so patient and let me take my time and move my head around and blink a lot. Anyway, the Dr decided to give me another Lucentis treatment and now is saying 3. This is so new and changing constantly according to what the Drs are experiencing. The one thing I note so much is how extremely busy they are. The nurse said they did 15 Lucentis injections the day before I was there, and I was the 5th that day. I had no ill effects. A little burning sensation the first day, came home and took a nap in the afternoon. The next day I was fine. This is the 6th injection into my eye. One time I had some residual pain and redness. I tell everyone who flinches when I say injected into my eye, it isn’t painful at all.
I need to report my success with Lucentis! I’ve had two shots. The first (on 7/11/06) brought me from 20/200 to 20/60. I was even on TV with the doctor explaining the procedure a week later! The first shot was not painful, except for a slight quick pain in the temple, and for several days had a slight ache if I moved my head quickly. Also had some hemorrhaging for several days. The second shot a month later was even easier. No pain at all and no hemorrhaging. I won’t know until I go back for the third shot if my vision has improved with the second shot. I’ll let you know. Had to pay for the first shot (was assured I’d be reimbursed by Medicare) and didn’t have to pay for the second. Thanks so much for your help and for all who encourage each other on this forum. I went in with confidence, thanks to all of you!
I had my first Lucentis shot on August 2nd. I had a PDT treatment and one Avastin before that, and my vision still went to 20/400 in the wet MD eye. When I looked at the chart at yesterday’s exam, I–for one split second—saw the big E. I knew my central vision seemed lighter. I never thought I would see the E ever again. There is light at the end of the tunnel, as they say. I wanted to share this good news with everyone who is looking forward to the Lucentis shot. One day at a time please. I felt like a kid in a candy store when that big E popped up for a peek at me!!!!!
September 14, 2006:
The Lucentis shot went VERY well yesterday (Thank God). No Betadine was used at all. They cleaned my outer eye with Physoderm soap and put lubrication and numbing drops and antibiotic drops in the eye, and the RS put in the piece that keeps the eye open. He was very gentle and patient. He said if I didn’t have any pain this time then the betadine was the iritating source. Low and behold, a pain free shot at last!!!!!!. Also my acuity went from 20/400 to 20/200. I could read the 3 letter’s under the big E!!!
On 12/13/07, I had my 2nd Lucentis treatment. Acuity is still the same at 20/400. This time betadine sting lasted all day – wasn’t feeling too good.
On 1/15/08, my acuity was still at 20/400. Doc used a gel stuff in my eye. I had the 3rd Lucentis injection and found it not as bad — could be because of the added gel. A little burning for a few hours, but no scratchy feeling. I go back in 6 weeks and see about Lucentis #4.
Tuesday 15 January 2008 – acuity still at 20/400 – so had 3rd Lucentis injection. This time the RS also used a gel in the eye. So thankfully I had no scratchy or stinging sensation.
Monday 25 February 2008 – had OCT – acuity still at the same level – no fluid/bleed – woo woo – I’m happy – Go back for check up 30 April 2008.
I went in for my RS visit yesterday. Had the usual OCT, FA and slit lamp exam. The fluid has subsided some, but was still there. I could see the photographs, and it looked to me like the area were the fluid had been was larger than on the last exam. Also, Dr. C stated that it looked like some vessels were now trying to form… I was given 3 options:
1: Hot Laser to try to seal off the vessels, since they are not directly behind the macula.
2: Lucentis injection
3: Do nothing but continue to watch and wait.
I am totally against any kind of laser after what happened with PDT in my left eye, so I asked Dr. C what he thought I should do. He said Lucentis. We talked for a few minutes. I reminded him about how afraid I was of both the injection and of going blind. He told me it would not be as bad as I thought. Promised to numb me up really well, and so on.
So I signed the papers and was processed through rather quickly. The nurse went slowly. It was not all that washing around the eye and so on that you see. She put numbing drops in, then a little betadine, then put a numbing gel in three different times. After that, Dr. C came in and put in the eye speculum, gently. It was a thin one, and I was numbed enough from the gel that I did not feel much under my lids. There was a sharp like feeling in the corner of my eye near my nose, and I was worried that it was cutting into my eye; but Dr. C said it was okay. So that part of the speculum was the only uncomfortable part.
From there, he explained to me everything he was going to do. He put in more betadine. I felt some stinging burning, but not as concentrated and not as severe as I had expected it to be. From there, he put some lidocaine on q tips and pushed on my globe with pressure, three times. He then painted the site of the injection with betadine again. After that he injected. At that point, I was not expecting to feel anything but pressure. However, I did feel the needle push through and had some pain with this. I jumped when this happened. It hurt and was not fun, but brief.
Dr. C then very gently cleaned my eye out several times over and over again with normal saline. Small amounts, not some royal drenching, that would make you feel like you were being drowned, as I have heard from some folks.
He then removed the speculum. I was beginning to have some stinging burning, more so than I had during the proceedure. I took a pain pill and got ready to go. I was wiped out, tired, and was getting a headache at this point. My eye was stinging, but not as bad as what I have heard some folks describe. This only lasted for about an hour, and then it felt a little sore, and like I had a hair or something in my eye. I did not feel a sandy dry gritty feeling.
I had no tearing or watering of the eye. In fact it was rather dry. I have a red spot were the shot was given. What did follow was that I got very nauseated, and started vomiting. I could not keep even sips of gingerale down. This went on thru out the night, and I finally fell asleep, but would wake up every so often very sick again and vomiting.
The next morning, I still had a dull headache, but not as bad as it was. My eye was a little sore. I noted no blobs, floaters or anything like that. The only difference I noticed in my vision was it seemed dryer. I did not feel like I was looking thru water, and the blurring was a little less. The black speck I noted in my vision seemed smaller.
Well, that’s it, and I hope this shot dries things up. I know the usual is several in a row, but my hopes are that, since this is early on, it will dry, and I can have less than the usual. If I do have to have another shot, I will not be quite as fearful. I hope, however, I do not get the headache and nausea. That made me feel really wiped out and physically sick. I am still hoping they come out with the eye drops, which would make life easier for all of us who have this.
May 3, 2011. My left eye has had a few drusen for several years, but is stable. I’ve had wAMD in my right for 10 yrs. It also was stable until 2006, when it bled and deteriorated. From 2003 I have had 3 Avastin jabs and 14 Lucentis. I want to reassure those in trepidation at the prospect of injection that only one jab gave me just a little trouble. That is the small exception. The others have been trouble-free. As others have reported, when the needle goes in, I have felt only a slight push. A transparent blob (the Lucentis) appears for a few moments and disappears. For the next few hours the eye might water and you feel a slight scratch on your lid, like a speck of dust. Normal sight and function return usually by the next day. It really is as simple as that. The thought of it is far worse than the actual thing.