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. For information about Avastin, an antiangiogenic drug being tested off-label for wet AMD, see Avastin for Wet AMD?)
Had my first treatment in September, and a week later my RS was very excited. The leaking was stopped, and the fluid behind the retina was half gone.
Before my injection on the 4th, they did an OCT [ocular coherence tomography]. This really got him excited. He was very optimistic. The leaking was stopped, the fluid was all but gone, and the retinal tissue was much thinner. WOW!! That is encouraging. On top of all that, I read the first line on the eye chart. First time in years.
My second treatment with Avastin continues to be successful. No leaks, and the fluid in the retina is gone. In November, my RS felt no further treatment was needed at this time. YEA!!!! Not the most comfortable of treatments.
Just a note on being a volunteer for new treatments. We can caution ourselves right into total blindness. Being optimistic is the secret to success. We all are where we are, not by choice, but to remain here is not the answer. I feel that the cure is as available as the volunteers. Thank you all who are brave enough to step up to the bat and help us all. Remember, we take risks every time we go out and about.
I am in a clinical trial at Johns Hopkins, using Avastin as an infusion for choroidal neovascularization secondary to diseases other than age-related macular degeneration. Dr. Campochiaro and Dr. Nguyen are leading the trial. In my case, pathologic myopia, this was my ONLY hope. PDT's were not an option due to several reasons. I had already had a massive sub-retinal hemorrhage in my right eye, and my left eye had just begun to leak (all within 2 years time since the onset of the discovery of the first bleed). My left eye was presenting just like the right eye, and I was on my way to blindness in that eye, also, when I contacted Dr. Nguyen. I was approved for the trial.
Dr. Campochiaro told me that my right eye was still bleeding. This was news to me. The infusion was perfect, because it would address both eyes at the same time, and it did! After the second infusion, the bleeding in both eyes stopped! I received a 3rd infusion, just as a "booster". Eyes are still dry. The vision in my right eye, which had scarred over since the bleed in January 2004, is actually improved! This drug is fantastic!! I had no side effects.
I know I am not alone in this situation. I pray that Avastin will be available as an infusion for myself and all other pathologic myopic people for future use. This drug saved my remaining eye!
November 6, 2005:
I returned from my recent appointment at Johns Hopkins, finding out the the leakage in both eyes is still stopped, as was the case after the 3rd infusion of Avastin in September. Furthermore, both eyes are completely dry; no puddles. My right eye, that had the massive hemorrhage in Jan. of 2004 and was "untreatable" and scarring, is now recovering. My vision has improved! My left eye which was heading for a similar hemorrhage is now out of harm's way!
The lab tests and all other monitoring of the drug for side effects show that I have not experienced any of the possible side effects listed. I would take this drug again in a heartbeat.
Yesterday I had my first Avastin injection. I arrived at the office at 1 pm, left at 5. It was quite an afternoon of tests and examinations. The procedure itself only took a few minutes.
For the 24 hour period before, I had used antibiotic eye drops. The nurse swabbed my right eye (the bad eye) with an iodine solution. Then the doctor propped my eye open with something. Next he gave me a shot of numbing medicine in the lower eyelid. A few minutes later he injected the Avastin. There was a feeling of pressure and that was it.
Woke up in the middle of the night and felt nauseated. Nausea went away around 11 am. I feel. I feel totally drained, but outside of that fine.
My eye is very red and weeping, but not infected. We are continuing to use the antibiotics. Their protocol is a maximum of three injections three weeks a part. It could work with just one injection. They will not do my other eye until they make sure I can tolerate the treatment and that it works for me.
I asked why it wasn't done intravenously, and the doctor said there could be dangerous side effects. I know they are doing it at Johns Hopkins, so do wonder how they are handling the possible side effect issue.
Since I have neovascularization in both eyes at the same time, it would seem intravenously would be the better choice, but I have to go along with their protocol. They tell me they won't know if it works for me for at least three weeks. I will keep you posted. My spirits are good, and I know I am doing everything I can.1/14/06:
Tuesday I had a first injection in my left eye. This was the eye that showed wet MD when I was in Arizona, but was dry when I returned here a month later. The doctor saw a slight problem with it now and said he would treat it. This injection went very well, and I had no after affects. I have had three injections in my right eye, which seem to be slowing down/stopping the leaking.
I am also in the clinical trial at Johns Hopkins for Avastin. I too have myopic macular degeneration in both eyes. My eyesight in my right eye was so bad I couldn't read anything on the chart, despite 4 PDT treatments. I started to get problems in my left eye also. One PDT delayed things but then my left eye started to deteriorate rapidly. By the time I entered the trial I couldn't read a book or cut my toenails.
Within one day (yes one day) of taking Avastin, my eyesight in my left eye had improved dramatically and I could read again. There has been some improvement also in my right eye. So far so good. The only side effect is some hoarseness in my voice - a very minor problem. We really need to get this drug made available to as many macular degeneration sufferers as soon as possible. It is fantastic.
Last Wednesday Nov 2nd I arrived at The Wilmer Eye Institute for my Avastin injection in my eye. I had the injection in my right eye, my RS wanted us to spend the night so I could have a shot in my left eye, as she did not want to give it to me together as there is a possibility of infection. I could not stay, so we went back on Tuesday, November 8, for a shot in my left eye and a follow up on my right eye.
Well, my RS is quite pleased, as it appeared that the fluid in my right eye went down, and she did see an improvement, although I can't yet realize that improvement. I am going to return on the 6th and 7th of December, at which time I will get an injection in one eye and the next day another in my other eye. I was told by my RS that they did administer Avastin via IV but they stopped. I have trust in my RS and pray every day. That's all I can do. I will keep you posted with other treatments.
By the way, I was also told that once I went on Avastin, I CANNOT go on Lucentis until it is approved by the FDA. My insurance will NOT cover my injections of Avastin, since it was NOT approved by the FDA for MD. The out of pocket cost is $356 per eye per injection.
My Husband and I are back from Baltimore with great news. I'm so glad I went with my RS and did not let the fear of needles hinder my decision. From only 4 weeks ago, I'm improving so much that I am going to continue my therapy. Instead of going every 4 weeks, I'm now going every 6 weeks. In October, the vision in my left eye was 20/200 now its 20/32. Any minor discomfort that I might have had is long gone.
My 3rd visit since my first injection of Avastin was very favorable. The R.S. said, "The retina continues to remain smooth, no more leaking since the first injection, no more swelling, and all of the fluid is gone." He also stated that my acuity has come from 20/400 to 20/200 WOW!!! I didn't expect that. I asked why is my vision blurry. He said, "You now have a cataract to contend with, but we will be able to take care of that sometime this year." ONWARDS & UPWARDS!!!!
My RS is very pleased with my progress on Avastin. My left eye is doing better than my right. I now am reading 20/32 with the left, and I think the right is 20/80. Not quite sure, but I just received my 3rd treatment. I was using Macugen, but, after 2 treatments, my RS said my eyes were not responding, so I went onto Avastin.
My right eye is end stage, but my left eye was taken from 20/60 to 20/300 by yet another bleed in September. I had had 5 PDTS, 3 Kenalog injections and 4 Macugen injections up to that point and the bleeds just kept coming. While getting the Macugen injections, the bleeds kept getting worse.
12 weeks ago, I got an injection of Avastin in my left eye. 8 weeks ago, with my acuity unchanged, I got a second injection of Avastin in that eye and also an injection in the right eye (which had developed a bleed). 4 weeks ago, with acuity still at 20/300 in foth eyes, I got a third Avastin injection in my left eye and a second one in my right eye. Yesterday, when I saw the RS, my acuity in the left eye had gotten back to 20/60 (back from 20/300) and the acuity in my right eye had improved to 20/200. Since my central vision is gone in that eye, this indicates that the blind area was reduced in size allowing better use of my peripheral vision in that eye. But the big news to me was the left eye, which returned to 20/60.
March 10, 2006:
Had my 6th Avastin injection yesterday. To review: When I started these injections, my corrected acuity was 20/300. After three injections of Avastin, my acuity had improved to 20/60. After the 4th injection my acuity was still at 20/60, but the surrounding blurry area was reduced in size. Yesterday, my acuity was 20/60 plus 3, i.e., I was able to read 3 letters on the 20/50 line. Exam with the lamp showed no problems at all but OCT showed a tiny remnant of the PeD remains next to the fovea and is almost gone. I have had three injections to my other eye and it has remained stable at 20/200 (not great acuity, but nice to be stable). So I have had a total of nine Avastin injections so far.
I went in on Thursday to have my Avastin injection. It was given into the top part of the white of the eye, instead of the side, as my Macugen had been. The injection was not any different in feeling than the Macugen, (pressure, burning from Betadine, gritty feeling), which was gone by mid-morning of the next day. I have not had any problems as of today except for nerves. I believe I build up any eye procedure to be more than it usually is! My RS said he felt so hopeful that, after 20 years of not being able to do a lot to help patients, it is getting better and better, and he was very excited.
The prep [with betadine] and administering of the injection was not frightening or problematic in any way. Nothing about the procedure: the numbing, placement of eye spectrum, and the injection itself was painful. When I was told I might "feel a little pressure", I thought to myself, "Sure...... The word "pressure" has usually entailed some degree of "pain"." However, it WAS simply a little bit of pressure. Nothing to it! I was pleasantly surprised.
The situation for me was problematic following the procedure. Shortly after the numbing began to wear off, I experienced a high level of discomfort. My eye was hurting. I was back in my hotel room with my eye weeping to the point that I would have to take both hands and (gently) pry my eye open. Then the light was intolerable. It wouldn't stay open. It actually felt like it was jerking, involuntarily. My eyelids began to swell along with the weeping. After about 4 hours of this, my friend suggested that I take a warm washcloth and hold it on my eye. It made a big difference. All in all, it was 12 hours after the injection before I felt like I was past the worst of it. At 2:00 a.m. the weeping had stopped, and I finally went to sleep.
Now, here's the kicker: the next morning, all I felt was a little "grain of sand in my eye". My eye was not red; it was barely pink. I experienced no side effects, from that day on that were of the slightest concern. In fact, when I saw my doctor on the 3rd day after, he could not believe how clear my eye was. Not even pink.
We all have a different experience, and if the experience is painful, that doesn't mean that one would choose not to do it. Of course you do it, because you are focused on the end result, not the pain. Because of what I have learned at this site, I will definitely ask about the betadine for my next injection. It could very well be the culprit for my experience following the injection. Perhaps my eye could be rinsed out a bit more.
Had my #2 Avastin yesterday, the first was 6 weeks ago. I still have some signs of fluid and the PED is not flat. My vision disappointedly had dropped down in my only good eye to 20/100, 6 weeks ago was 20/80-a couple of letters. The pinhole worked for me last time but not this time.The injection went much smoother for me this time, I haven't had as much eye irriatation, not as sore as it was before. The combination of Avastin and dilation sure shoots the heck out of my seeing though. My health insurance, Blue Cross Blue Shield and Medicare are paying for the drug.
Dr Russell at the University was disappointed in my results, but still and all, better than it was. We talked about the 1 out of 3 it helps. Of course, I wanted to be the 1. He told me of some very outstanding results and some very disappointing ones.
June 23, 2006 - RS appointment for Avastin 1st one, acuity now 2/300, I was a little nervous, the betadine stung a little, the pressure from the injection I hardly felt,a bit of discomfort. The worst part for me was the glare driving home (my husband drove of course!!) although winter this day the sunshine was at its best. So basically closed my eyes for most of the drive (35 minutes).
The gritty stingy feeling was annoying so 10 hours later just went to bed. On waking the next morning I was quite surprised as all that discomfort had gone, eye just slightly red. So cant complain - I am very fortunate. Antibiotic drops for next 5 days, next RS appt. in 6 weeks. So fingers crossed.
Out of pocket expense was $450 ($350 was for the avastin drug) that is for pensioners. Non pensioners out of pocket is $550. Private health insurance doesn't cover it nor does government Medicare. That's it for the PDT/Avastin combo.
August 3, 2006 - Yesterday went for check up, 6 weeks ago acuity 20/300 had PDT on a Monday and on the Friday 1st Avastin. So now acuity is 20/200 and the bleed has stopped. Rah Rah Rah!!! Sooo happy.
I know that I could still have another bleed, so have to keep an eye out for any changes, so had OCT and no treatment this time. My good left eye was 20/20 minus 4 letters - so you see I am golden. Go back in 6 weeks for check up - time will tell.
December 11, 2006 - Acuity now 20/400. Had 2nd Avastin shot. No real problems with this. Just took me a fair while to stop moving my eye and blinking. RS was getting a little frustrated (so was I). Go back for check up again in February 07. Although I felt disappointed, reflecting, I feel blessed that I didn't have to have treatment for 4 months. A bonus.
March 19, 2007 - Acuity still stable (right eye) at 20/200 - OCT showed the tiniest amount of fluid hardly there, so RS decided best to leave Avastin shot number 3 for the time being. Go back in 6 weeks. 3 months dry now - life is good.
April 30, 2007 - visit to RS - OCT was pretty good and no fluid. Unfortunately, the acuity in my right wet eye had gone back to 20/400 plus 1 letter. How strange. 6 weeks ago, it was 20/200. The RS said it may have been the lighting on this day. I must admit, the glare was really bad for me. My right good dry eye has gone down a bit from 20/20 to 20/33.33. So you see, strange things can happen. No leak, so I am still "Golden," and happy not to have to had the shot since 4.5 months ago in December.
July 30, 2007 - Good news still stable - OCT good reading - Acuity 20/200 (6/60) looking peripherally at chart. Last Avastin shot was in December 2006 - 7 1/2 months ago. Hey, how good is that!
For those newly diagnosed, don't hesitate for treatment. The earlier the better. I didn't receive any treatment until 9 months after the diagnosis. Hence the deterioration of the right wet eye. AND my left eye is 20/20 - and hopefully will stay that way "until death do us part".
November 5, 2007 - Sprung a leak! Acuity now 2/60 (20/600) right eye. Last Avastin shot was in December 06 - Acuity after that was 20/200. So really been fortunate that I've only had 2 shots.
The next step is Lucentis in another week. So there we go. See what happens. Mind you, this acuity today may have had a lot to do with the lighting. But the ole leak is there for sure.
November 15, 2007 - This is my 1st Lucentis shot. The worst part for me was the thing that holds the eye open, and the Betadine swab. Just felt a slight sting as the needle went in. I did feel a little nauseous and a headache directly after, but it didn't last long at all. My eye is feeling gritty, weepy and a bit sore. So next shot in 4 weeks.
Had my first Avastin injection over three weeks ago and my vision improved after four days. Went for a check up after two weeks, and I could read two extra lines on the chart. The doctor was over the moon with excitement.
Daily routine is so much easier. With just a little extra sight, it has perked me up greatly. My first great grandchild is due in November, and now I feel confident that I shall be able to see the baby.
Will be going for the second shot in two weeks time without any hesitation,I didn't feel any pain at all except the numbing drops just for a second, so here is one happy gal.
I have been being treated with Avastin. At my appointment this last Monday, the deep photos showed that the disease is completely healed, much of the damage has been reversed, and I have even regained a bit of the normal vision loss due simply to age. I feel very lucky to have been in the right place at the right time and with a doctor who uses this medicine in his treatment of some of his patients. If the disease should return, I now know that treatment is possible, and that really takes the pressure off!
I am writing to share my experience with intravitreal Avastin for CNV leaks in myopic macular degeneration. My first bleed was a year and a half ago with PDT given, which worked initially, but 2 follow up PDTs in January and March of 2006 did not stop the leakage. I spent the first 5 months of 2006 with visionÊaround 20/80 with my RS reluctant to use Avastin with a myope. After a second opinion, I finally got my first eye injection from my RS in May. At my 6 week follow up, there was no leak, and vision was 20/40. I had one more injection for assurance, and my eyes have been leak free for over 7 months with vision at 20/30!
The injection process took only minutes. A numbing gel was applied to my eye with a swab, a device was used to keep my eyelid open, then I felt a little pressure and some jiggling sensation. Afterward, I could see the little dots (like bubbles) of the drug in my vision. This cleared by morning and my eye was only slightly pink at the injection site. I was given antibiotic drops, and everything got better from there.
The decision was not easy. Eye injections carry risks, and if there were another option like an eye drop or even systemic, I would have done that. I contacted the Wilmer Institute, Baltimore, where others received intravenous Avastin, to see if there was any possibility of getting into their study, but it was too late. Luckily, I met another myope with CNV/leaks/MMD who successfully received Avastin eye injections whose vision went from 20/400 to 20/30, stable! This knowledge helped me to take a chance that returned vision I thought was gone for good!
On May 5th, I wrote about the painful aftermath of my first Avastin injection. Dan, Mary and Jan and others immediately offered suggestions about preventing a recurrence.
What a difference! After this week's shot, there was little discomfort, no uncontrollable tearing, no bleeding into the eye and I didn't have to be in bed in a darkened room. Maybe this will help someone else.
Ask the RS to further dilute the Betadine and to repeatedly flush with lots of saline solution after the shot. (He has me use antibiotic drops four times daily for three days before and three days after an injection so the risk of infection is much lower anyway).
If you have dry eyes, the Betadine will increase your pain. All the more reason to use a weaker solution of it or to substitute another disinfectant.
Take some Tylenol (I took two 500 mg gel caps within an hour of the shot) or another nonaspirin pain reliever.
Use cold water compresses (not ice) on the eye. Do not use heat.
Keep your eyes covered until you are out of the sun. In addition to my goggle sunglasses, I never go out without my big floppy brimmed hat. After the shot, it allowed me to shut out the glare and rest that eye during our 90 minute trip back home.
It was easy only because I found this site and you all were willing to help me.
OK. So I have THAT behind me now.
Actually, the procedure wasn't nearly as bad as I had pictured it to be. But let me go a bit into detail so you can have an idea of what the procedure was like for me.
My appointment was for 1145 (24-hour system). I was given drops for dilation and pain. Before that, however, my eye pressure was monitored for both eyes. Then I waited in the patient waiting room.
At several intervals of about 10-15 minutes or so, I was given further eye drops. (Pain killers.) I found it very interesting that the second round of drops couldn't be felt: the anesthetic drops deadened my eye's feeling, so I couldn't feel the drops hitting the eye's surface! Weird experience (but comforting, as one then knows the pain drops are working!)
I went to the men's room to urinate (seems when I get nervous my kidneys go into overdrive), and about three minutes after returning to the waiting room, a nurse came in the room and told me that I had to wash my hands. For a second I was nonplussed, as I always wash up after a visit to the men's room, but this was standard procedure for all the patients; we all got a chuckle out of it though. (My wife was with me in the waiting room, as she drove me to the appointment. Nice having a support person, by the way!) I joked about the fact that "I didn't know these folks have hidden cameras in the men's room!!!"
Then I was given a medical cap to wear and "booties" to cover my shoes. I was then taken to another room where drops were given to me twice again.
Then I was taken to the injection room. My eye doctor and his medical assistant (also a Dr. type) were waiting for me, and were wearing full surgical gowns, gloves, and masks. The whole nine yards! Almost like brain surgery!
I was asked to lie down on a surgical table, and then had my target eye's eyelid swabbed down on the outside thoroughly: upper part to the eyebrow, bottom part to the upper cheek area. (My eye was closed during this swab, of course!)
Then my eye was irrigated with some (I'm guessing) disinfectant that was yellow in color. The eye was really flushed out! Almost like a mini hose it seemed. Then I was given some special clear drops--which I believe were intended on washing the yellow color of the wash off the eye's surface.
Then I got a device put on my eye that held the eyelids open. (This thing that others have said was horrible.) During the placement of the device, I received a very small cut in the eye to allow for fluid displacement. This is intended to compensate for the adding of fluid via the shot. I hardly felt it.
Then I was told to look "up and to the right." Then I got the shot. That hurt a bit; it was a brief intense combination of pressure and dull pain. But it only lasted about two or three seconds, and after about four seconds more the needle was removed and the procedure was finished.
During the injection I noticed a cloud of clear liquid swirling in the eye. Something like when you mix alcohol with water.
Afterwards, I was given an eye patch and instructed to return for a checkup the next morning at 0800.
During the first evening after the injection, my eye felt a bit scratchy. That lasted until about 2000 hours in the evening. Then I hardly felt anything negative. The fact that my wife and I went to an Italian restaurant right after, and my eating a healthy (olive oil and vinegar dressing) salad, and my wife driving me back home made me feel that life goes on after such an injection.
I wore an eye patch (pirate type!) over the gauze patch to ensure that the gauze patch would stay put, and slept fairly well until the next morning.
The next day, prior to my being checked out by the doctor, my eyes were checked as to internal pressure. After I had the eye pressure checked, I was then called into the doctor's office where he then personally checked out my eyes with his machine (during that check my affected I was also dilated.)
On the inspection of my eye, I told the doctor that I didn't notice any difference in my vision. He inspected my vision at the same time and told me "But I notice a difference: you can read three more lines then last time."
I'm a psychologist by training, and I normally tell my students that a good trick for the dentist's office is to note the width of one of the walls in the waiting room. Break the width into 10 equal units. (You have to use something concrete; using an abstract scale just doesn't get the same effect.) Then estimate how bad the procedure will be. A "1" means nothing; A "10" means a horror trip. Normally, when you get out of such a procedure, the rating is much lower than previously estimated. (Pre-estimates at the dentist office run around 9,999. This injection trip was about 99,999 for me! This data (when things are over) is a reaffirming procedure that tells you things are not always as bad as they first seem. And you can use the last rating "result" to prepare yourself for the next appointment.
So, using my system:
Knowing that these shots are going to help me, makes them seem less terrifying. The procedures used conveyed to me the impression that my physician knows what he's doing.
I'm scheduled for a second injection in 6 weeks. And I was given antibiotic drops to use for about a week (4 times daily, one drop), and have to come in for a checkup 10 days from now.
All in all, if these shots stop the progress of my MD, I'd do them again in a minute! And, of course, if they slow "bad things" down, they are worthwhile too.
Progress today? Lines are less distorted already (this took until late afternoon) and that "cloud" I was seeing has diminished in intensity too. Given that the doctor noted an improvement in visual acuity (again: 3 lines) which I was unable to quantify subjectively, shows me that he knows what is going to happen, and that he has confidence that this Aventis protocol is what I need.
OK. Sorry for the length, but I wanted to go a bit into detail about what went on. Also: my doctor is German, and this is (apparently) the procedure in Germany. I must say that the precautions taken for a sterile environment were reassuring to me.
I had my first Avastin shot Tuesday, Oct 5 in my right eye. For 3 days before I used antibiotic eye drops, 1 drop 4 times a day; will continue those for 4 days after. It was totally painless! The longest part of the process was the prep. The eye was dilated, numbing drops applied, the eye was cleaned with betadine and then a Novocain shot. After a waiting period to allow total numbing, the Avastin was given. The shot could not have taken 2 seconds!
The nurse then rinsed the eye for several minutes and applied the antibiotic eye drops. My eye felt very scratchy, apparently from the drying affect of the betadine. She applied artificial tears in a thick gel and told me to use that as often as needed; (waiting 5 minutes) if used after the antibiotic eye drops.
I was told to bring someone with me to drive me home. Hubby went, but I could have driven home without a problem!
For the remainder of the day, the right eye was sensitive to light and felt a bit tender at the shot site (that area was also a bit bloodshot) and continues that way this morning. As I was told, it took almost all day for the numbing to wear off. The eye felt a bit different but that was not bothersome at all. I was able to do whatever I wanted. I was told to not swim for 3 days. Thanks goodness it has cooled off here considerably this week and our pool temp is too cool for meÉlol. So swimming is not an issue.
My vision in this eye was just beginning to get a bit fuzzy and the MD was diagnosed a week ago. I am not going to proclaim any real change in the vision at this point because it had not negatively impacted my sight; it was just a concern. I am blessed and can still read small print with the right eye.
I go back next Tuesday for follow up. At that time we will determine when to do the next shot. I have a wonderful retinologist, who is very current on all procedures. I have had laser treatments in both eyes due to large floaters. The left eye 2 years ago and the right 6 months ago. I donÕt know what the outcome of all this will be; however, I will be pleased if the progression is stopped at this point.
Please do not hesitate to use the Avastin or whatever your doctor recommends because of your fear of pain. Research your doctor, ask questions and make an informed decision. It is such a small dose of Avastin, there will be no hair loss. I saw that mentioned on one of the sites and questioned my doctor. He smiled and said it was a question every woman asks. No hair loss related to the shots. His office has done 15,000 Avastin shots and only had 13 infection cases. The "germ" that causes the infection is only found in the mouth, so he requires no talking during the procedure.
I wish you all the best!!