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What to do next ...I've been given one last option
I developed Cystoid Macular Edema after cataract surgery. The cataract surgery was necessary after a victrectomy due to a retina detachment. I have been treated with Lucentis for 6 months, and this as not appeared to help. It appears to work for the first two weeks of the injection and then based on OCT test the number rises to above 600. I have been advised that I now need to consider Steroids as my only option. I'm concerned about developing Glaucoma. Is there anything else out there that could help Cystoid Macular Edema?
If I leave Cystoid Macular Edema what would the end result as opposed to developing Glaucoma with Steroids. I thank you in advance.
If I leave Cystoid Macular Edema what would the end result as opposed to developing Glaucoma with Steroids. I thank you in advance.
Hi
I thought you might like to know of somebody else in your shoes and what my experience has been. I have had CME for the last 14-15 months! My retina specialist also was reluctant to use steroids. In my case, it was because I was already known to be a steroid-responder, that is, I had already had elevated eye pressure a year or so earlier when I had used steroids. My doctor was convinced that something like Lucentis would be successful in resolving the CME (in my case, Avastin was used which is a sister drug to Lucentis). My own research show that there is very little real evidence that these type drugs are very useful for CME. There are some isolated case reports, but no scientific studies. There are also case reports of patients treated with Lucentis or Avastin whose CME persists, rebounds or worsens while being treated with such drugs. In one such article, the patient responded dramatically to a steroid after several unsuccessful months of Avastin. Of course, the doctors using Avastin or Lucentis, are well-intentioned since they want to avoid the eye pressure problems steroids can cause. But months of CME and multiple injections of very expensive drugs carry risks and costs as a trade-off. In my opinion, steroids are much, much much more effective. After a year of Avastin, my retinal thickness was 465. After that, I used a potent steroid eyedrop called Durezol for a week and the CME was completely gone! Yes, my pressure zoomed up and I had to come off the Durezol. The CME immediately came back. I'm now trying to stay on Durezol a while longer using a bunch of glaucoma drops, but it will be worth it to get rid of the CME if it works. I worry that having had CME for so long will make it harder to resolve it and leave me with permanent retina damage. I wish I had known to insist on the steroids in the beginning. I'm not suggesting that you practice medicine and treat yourself. You can't, of course. But you can talk with your doctor about this, or see a different doctor. I would love to hear from you about this. It is a subject I have a real personal interest in. Good Luck. Though CME is not like being blind or anything, I hate it when doctors minimize the problem. I can still do anything I want, but working at the computer can be exhausting and the joy of reading for pleasure or doing detailed tasks is gone from my life and maybe forever.
I thought you might like to know of somebody else in your shoes and what my experience has been. I have had CME for the last 14-15 months! My retina specialist also was reluctant to use steroids. In my case, it was because I was already known to be a steroid-responder, that is, I had already had elevated eye pressure a year or so earlier when I had used steroids. My doctor was convinced that something like Lucentis would be successful in resolving the CME (in my case, Avastin was used which is a sister drug to Lucentis). My own research show that there is very little real evidence that these type drugs are very useful for CME. There are some isolated case reports, but no scientific studies. There are also case reports of patients treated with Lucentis or Avastin whose CME persists, rebounds or worsens while being treated with such drugs. In one such article, the patient responded dramatically to a steroid after several unsuccessful months of Avastin. Of course, the doctors using Avastin or Lucentis, are well-intentioned since they want to avoid the eye pressure problems steroids can cause. But months of CME and multiple injections of very expensive drugs carry risks and costs as a trade-off. In my opinion, steroids are much, much much more effective. After a year of Avastin, my retinal thickness was 465. After that, I used a potent steroid eyedrop called Durezol for a week and the CME was completely gone! Yes, my pressure zoomed up and I had to come off the Durezol. The CME immediately came back. I'm now trying to stay on Durezol a while longer using a bunch of glaucoma drops, but it will be worth it to get rid of the CME if it works. I worry that having had CME for so long will make it harder to resolve it and leave me with permanent retina damage. I wish I had known to insist on the steroids in the beginning. I'm not suggesting that you practice medicine and treat yourself. You can't, of course. But you can talk with your doctor about this, or see a different doctor. I would love to hear from you about this. It is a subject I have a real personal interest in. Good Luck. Though CME is not like being blind or anything, I hate it when doctors minimize the problem. I can still do anything I want, but working at the computer can be exhausting and the joy of reading for pleasure or doing detailed tasks is gone from my life and maybe forever.
MEDICAL PROFESSIONAL
If you develop glaucoma temporarily from the steroids it will usually improve after the steroids are stopped and they wear off. Intravitreal steroids are a usuful treatment for chronic persistant CME when other methods have failed. So chronic bad CME means terrible vision. There is only a chance that the steroids will increase your pressure if that happens, then it usually improves with time. So in the big picture you have had an RD, CME, several lucentis injections - so if I were you, the small chance of glaucoma issues is a relatively minor point in comparison, especially when it is one of the few things that can help you.
MJK MD
MJK MD
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