Accounts of Personal Experiences with
I have wet AMD in both eyes with vision in left 20/300 and right 20/80. The bleeding in my right eye was too large an area for PDT, the left has stabilized from a major bleed and vitrectomy, but I do have a cataract that needs to be taken care of. I was selected to be in a study with Macugen and have had one injection in right eye. The injection had no pain associated with it, but you do feel pressure as they inject it. I didn't realize how hard the old eyeball is. smile. The only side effect was a scratchy feeling for a couple of days. As for improvement, I feel that colors are brighter and I might be seeing clearer, but one day is better, the next not as good.
I am thankful that I was able to have the injection. Like everyone, I have run the course of highs and lows and I never know when they will hit me. Hopefully with the Macugen I will not only help myself but others as well.
I received my second Macugen injection this past week and have had no adverse reaction to it. The Dr. said my eye had improved a little from 6 weeks ago (I'll take anything I can get - smile.) I had active bleeding when I started, due to area being to large for PDT. The injection this time was a breeze, I felt very little pressure on the eyeball. I figure in my layman mind that the Dr. has become more proficient at injections into the eye.
The follow up after my second Macugen injection is encouraging. The RS did not find any bleeds from the vessels that were leaking when I started injections. Don't know whether it is the injection or time. He said my eyesight is better after this injection than after the first one. After first injection 20/300, this time 20/100. And it usually is better still at the time of the next injection.
My third Macugen injection and weekly follow up went fine. My eyesight is staying about the same in injected eye. . . RS could see no sign of any new blood vessel growth and no leaks, and most of the blood from the bleeds has dissipated. Vision is 20/60 before injection and 20/100+ at weekly follow up and by week 2-3 down to 20/60 again. My RS has about 5 people from the Eastern WA area traveling to Portland in this study. I asked if results had been similar to my results, and he said yes. He doesn't believe it improves vision as much as thought. He is now giving Macugen injections, so his patients must have shown him that there is improvement for new blood vessel growth.
I am . . . writing for my husband, Jack, who received Macugen two weeks ago--the first for his RS. He had no problems after the shot, and when we went to be checked yesterday, the RS reported that there was no visible blood and the leakage was a good bit less. Evidently the Macugen is appropriate for all types of wet MD, while the laser only works in some cases. We are encouraged by the results, and Jack is scheduled for another shot on March 24. I will keep you posted.
March 1, 2005:
This weekend a new blob appeared in my vision, and a visit to the RS yesterday confirmed a new leak. So, he said that while PDT with Kenalog worked for me last time out, that Macugen was indicated this time--up to me. So I said I would like to try the Macugen one time, and he agreed, so I got a shot of Macugen and an appointment for another shot in six weeks.
The doc applied anti-biotic eyedrops and then when ready to do the job, applied a local anesthetic with a skinny swablike sort of thing. Then the shot, which took just a few seconds. Like a couple of other people have reported, it was no big deal at all. Kind of unpleasant is all. And afterward it felt like I had a grain of sand in my eye. Kept that up until bedtime, and my eye turned red and watering. When I got up this morning, the gritty feeling was gone and so was most of the redness. I just have to put in antibiotic drops for one day. Then I have to put these drops for two days prior to my next appointment.
There was also a small air bubble that got in there with the Macugen. It appeared as a ball bearing rolling around in the bottom of my eye. I asked the doc about this bubble, and he said it would be gone in a day. That was right: it was gone this morning when I got up.
I asked my doc if he had given Macugen to very many people now. He said there have been about 15 so far. I asked about results, if any. He said that most recipients were pretty happy with it so far, except for one guy.
So, I don't really know what effect this Macugen is going to have on my eye, but I have several benchmarks to check the results against, and I will know if there are changes. I will be glad to report what happens. I am hopeful.
April 7, 2005:
Well I went for a follow up visit today after receiving the PDT/Kenalog 13 days ago. Sad to say....more leaks. So I got Shot #2 of Macugen. It was Macugen #1 on March 1 followed by PDT/Kenalog on March 25 followed by Macugen #2 today. My acuity checked out at 20/80, but it was a struggle. The other eye is end stage, i.e. centrally blind. There seems to be no problem so far with mixing the meds, i.e. Visudyne, Kenalog, Macugen. Just speaking for myself, here, but I wanted to take a chance and so I did.
By the way, my retina doc has now given over 40 Macugen injections. He said that it is early to tell how things are going to turn out, but he has now had a Macugen patient whose vision has improved by 2 lines.
May 19, 2005:
Went for my RS visit today. Still a bit of blood present. The RS recommended to go ahead with Macugen #3 and so that happened.
I asked him what all the opthos are thinking about Macugen now that it has been a few months. He said that they are feeling encouraged by results so far. He has had four patients with positive improvement. For my part, I am also encouraged.
One interesting thing here is that my acuity on March 1, (when the leak was noticed) was 20/80 and on all subsequent visits, including yesterday, it has remained 20/80. I also take comfort knowing that my cataract is pretty bad and so if my vision will hold at 20/80 until the blood goes away, then I can expect some improvement when the cataract is taken care of. The RS has recommended I hold off on the cataract until my retina is dry, smoothed out, and stable for a while. So I will do that. The cataract was coused by previous Kenalog injections and, of course, got worse with this last one.
The Macugen was different this time. When he injected the drug, my vision blanked out completely in that eye. Black! I said, "I can't see." The doc said, "Don't worry, it will clear up in a minute," and it did. The reason I mention this is because I didn't have that happen with the first two injections. I'm just trying to share as much detail as I can for those who are gett ing Macugen or thinking about doing so.
My sister in law had Macugen treatment last Thursday for a leak in one of her eyes (she has the big, bad wet MD in both). Today she called, and her eye is better!! Much more "comfortable" and she can see more clearly (not much, but some).
Her doc has been using Macugen for several years as part of the research studies and is very pleased with the outcomes he is having. He offered her Macugen or Kenalog for this leak, and said he preferred to use the Macugen. She feels the same as I do. No matter what happens, now there is a real chance (and choice) of treatments! Wonderful!
Well, I had my first Macugen treatment yesterday. Didn't hurt, but was quite uncomfortable. My sight is still cloudy in that eye. The doctor called me today to see how I was doing, and he said to expect it, and it should clear up in a few days. I hope so!
I am putting an ointment in my eye 4 times a day for 5 days, erythromycin is what it is called. It's to help stop infection. The eye is still quite sore, like there is sand in it.
For all that haven't had a treatment, let me explain the process. First, the nurse washes the eye lid with some brown soap. Then drops are put in the eye to deaden it. The doctor comes in, and a wire form is put on the eyelid to hold it open. More drops and ziolacaine are applied with a cotton swab to the spot where the injection is going. When I received the injection there was instant pressure in the eye causing a headache. That went away in 30 minutes. I could not see anything for a few minutes, then the sight started to return. By this morning I could see, but it was cloudy, and the eye is sore.
I hope this helps some people in their decision to get the treatment. I am signed up for another one in 6 weeks. I have committed to 3, and then we are going to evaluate my case. Vision in the treated eye is 20/100. We don't expect it to reverse, but it would be nice.
September 28, 2005:
Well, I went back for my 6 week checkup after starting Macugen. I have had 3 treatments. The RS's quote is, "Well, I guess you failed Macugen," meaning I am one of the people it does not work on. We were treating the right eye, and over the last 6 weeks I have had significant bleeding. I asked about PDT [photodynamic therapy], and he told me that PDT is used mainly when the leakage is centralized in a specific area. The new bleeding is widespread, and there would be too much scarring if we try it. Oh well, I knew this day was coming. Just not this soon.
I have had 2 injections of Macugen for myopic MD in my right eye. Both times I have experienced pain after the procedure, but it was short-term and felt like I had sand in the eye. For a few days afterwards I had pain around the injection site when I would blink which felt like a bruise. Other than that, I have found the procedure to be definitely tolerable and worth the discomfort. After the first shot I had a few days where I couldn't believe that I had allowed someone to stick a needle in my eye but I got past it and the second procedure was as straight forward as the first.
My RS told me it could take 2 to 3 injections to see any improvement. Within 48 hours of the first procedure it seemed like I was beginning to see things better than I had been. This continued to the point where I could read 20/30 on the eye chart whereas the day of the injection I could see 20/80. At about 5 weeks, however, I began to notice a decline in my vision. My RS says I may need to have the injection every 5 weeks instead of every 6. I'm currently keeping a journal to see how things progress since the second injection. Again, I find that my vision has improved as before. After the first injection I found myself looking around in wonder as my vision came up. After the second I found myself comparing the speed and amount of improvement to the results of the first.
I have to say, I hope there will be a day where such medicine as Macugen can be delivered to such a level of effectiveness by means other than injection, but I'll be the first to say that the discomfort up front had been worth it to me. I understand that there are other drugs being tested in clinical trials and they may ultimately prove to be better than Macugen but for now I'm glad there's something FDA approved that my insurance will cover that allows me to maintain my independence and peace of mind.
I thought I would share my experience with my first Macugen injection. It wasn't as bad as I thought it would be. The nurse said the preperation before the injection would be the worst and she was right.
The first thing they did was put numbing drops in my eye. Then she put a betadine solution in my eye and waited 3 minutes. Then the nurse had a swab soaked with some kind of numbing stuff and rubbed it on the white of my eye where the injection was to go. She then focused on one area of my eye and pressed continuously for 5 minutes. Seemed like she was about to push my eyeball out. I asked her why she had to do that for so long and she said she was squeezing out liquid to make room for the medicine plus to totally make sure the eye was numb. Then the doctor put something in my eye to keep it open and gave me the injection, I did not feel a thing. My eye seemed to fill up with water and it was almost like I could see the medicine go through my eye (kinda wierd). I sat up and the nurse put some antibiotic drops in, checked the pressure in my eye, which was fine and I was good to go. I do have a bubble on my eye which is normal and should go away in a few days. I need to put antibiotic drops in for three days for the possibility of infection. The nurse will be calling tomorrow to check on me and I have a follow up appointment in 2 weeks.
My eye is red and kinda sore but not too bad, the bubble is just annoying. I am thankful I have a doctor I trust and who listens and explains things to you. Everyones experience is different in ways but if you have a wonderful doctor like I do it won't be painful.
I had my 1st macugen treatment this past Wednesday. I was, to say the least, a nervous wreck on Tuesday, as I knew Wednesday was the next day. I am a hater of needles, so some of know where I'm coming from. Well, in reality, it did not hurt at all. Since this was the first time, I guess it was the not knowing that really caused the fear. I did not even feel pressure, but I did hear a noise that I did not like hearing. I have to go again Sept 27th for #2. My poor eye did swell up, and it felt like I had a bad paper cut in my eye. Now its just a little sore, no redness or swelling. I will keep you all posted.
I had my second treatment on Tuesday at the Wilmer Eye Institute. This time I did not hear any strange noises, and it seams that my eye took it better this time, as it is healing faster. Good news: my eye has not changed in the past six weeks. Yippee!!!!!
I went to my RS yesterday for my 3rd macugen injection. He said he wanted to try a new process of injecting the Macugen. He said that Macugen comes pre-loaded in the syringe and he has noticed some of the needles to be blunt. He said that is what causes the injection to be uncomfortable when it shouldn't. The new process was:
1. Dilate eye
2. Clean eye and surrounding area
3. Put drops in eye to numb it
4. Hold Q-tip on with drops on it to the eye
5. Inject a small amount of Novocain into the area just below the eye, although it seemed like it was in the eye
6. Put the wire form in eye to hold it open
7. Inject macugen
He was right. I didn't even feel the pressure I normally feel when the injection is given. I didn't feel anything once the Novocain kicked in. I am not sure it was Novocain, but it was just like it. There was a slight sting when he injected the Novocain, more like a bug bite. They did three pressure checks and sent me home with a salve to put in the eye for a week.
I am through with my treatments of Macugen, they were unsuccessful in controlling the leaking, and reducing the swelling, but nothing ventured, nothing gained. The reason given to me by my RS was that the leaking vessels were still leaking, and the swelling in the back of the retina was still swollen. That was the extent of the reasons given. Sorry I can't be more specific.
Thought I would let you know that I had my second macugen injection. Already some things have changed in the procedure. First, I no longer have to put antibiotics in my eye for several days prior to the procedure. Then they used a gel of some sort for numbing for the first injection. Today the Dr. said that they felt the gel irritated the cornea too much. He used a needle with numbing stuff in it. I felt it a little. Then when he injected the macugen I felt it also and it was slightly uncomfortable. But I guess they were right because my eye is not nearly as uncomfortable as it had been the first time. Another one will be done in six weeks.
Had my third injection on Monday. The only thing different was that they again had me put my antibiotic drops in for three days prior to the scheduled procedure. After that, I am to put them in for five days. The surgeon's assistant said they keep going to seminars and learning new things. Went back today to have pressure in the eye checked and everything looked good. When I go back in six weeks, the Dr. will do the dye test and take pictures to see how the problem is doing.
December 21, 2005:
I went for my fourth injection yesterday. They first put the dye in and took pictures. This resulted in very good news. My eye is now fine and the doctor said it is miraculous. He never saw anyone get this improved after only three injections; but he still wanted me to have three more to make sure the veins are sufficiently blocked. Went to my regular eye doctor today to have the pressure checked, and all was well.
February 3, 2006:
I had my fifth injection this past Monday. The Dr. said that, since I am doing so well, I do not have to go for pressure checks any more. He did throw me a slight curve. I thought from what he said six weeks ago that I would be finished after my sixth shot. Not so - Dr. says you can't go off this "cold turkey" but gradually - three months, six months, and even a year. I'm sure he will let me know the exact schedule when next I see him.
I also asked him what the difference is between avastin and Macugen. He said avastin is stronger but since I'm doing so well on macugen he will keep me on that.
Yesterday I had my fifth Macugen treatment. Good News, I am one of the few that Macugen has been helping. After the 3rd one, I was discouraged, but kept on. Now the bleeding is gone, but there is still a little fluid. I will be going back in 2 months, where my Retina doctor wants to try Avastin or possibly wait for Lucinitis. He did say I was the only one of his patients that Macugen had helped and he had switched everyone else over to Avistan. He did not tell me if Avastin was helping, but that it was stronger than Macugen.
My appointment today went just fine. Because I had had the Fluorescein Angiogram only one week ago, today I only had to have the usual fast Vision Test with glasses (went back to my initial 20/40 of last October), pressure check in both eyes (good at 13 and 15,) eye dilation in the wet eye only, eye preparation for the Macugen Shot and then, of course, my Macugen #3 Injection.
My injected eye is still dilated and very blurry from the shot: its usual short-term reaction. I do not feel anything anymore. For about an hour after the injection I felt a slight pressure-type feel. I would assume that my eye is still "frozen" and hopeful that it will thaw out sometime during the night. For the previous two shots, I never knew when my eye went from frozen to not frozen.
Although my wet eye is "still active," my vision is holding and not deteriorating...and no new blood vessels have formed. I attribute this to Macugen Shots #1 and #2.