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cme
Posted: 2008-02-23 08:38:39 By nancy j
Hi: I just found this room. I am a 65-year old Psychologist with a diagnosis of cystoid macular edema responding to the person with the question about the dye test for cme. It is nothing to worry about. This is called the Flurochein. Not sure about the spelling. They inject a dye into your arm, then take pictures of your eye so they can see the vascular issues, etc., in your macula. It is painless and the only annoying thing is the light from the camera when they take the pictures. Hope this helps.
Can anyone offer any information about CME? I have been treated for a year and a half. Started with drops, then injections into my eyelid (about 7) and when that didn't work, an injection of Kenalog into my eye (which caused a reaction of haze which lasted about a week). After that doc was reluctant to inject Kenalog again, so tried Avastin, which did not help. I am now on steroids (UGH!) and just started on Sulfasalazine (now seeing a rheumatologist as well). Please advise. I am more than a little depressed about this since I've been a healthy person all my life, and this has seriously hampered my life.

Re: cme
Posted: 2008-02-23 12:41:52 By nancy j
Hi Darran: Thank you for your reply. I have had the latest OCT test several times during the course of treatment. I was told by my doctor that the dye test is the most reliable and I have had that one several times, as well. My CME is very resistant to treatments...my doctor says that I am unusual in that respect, since he has always had success with the injections into the ey itself.
I am currently taking oral Prednisone, 20 mg a day while I wait for the Sulfasalazine pills to kick in. I have been on higher doses of Prednisone, which have terrible long-term side effects. Was recently referred to a Rheumatologist for other drugs, such as the Sulfasalazine which I am currently taking. She hopes that this will keep the CME under control but says that it will probably be chronic. I am lucky that my vision is not as bad as some...it seems to be in the 20/50 range when I am not on Prednisone, and better when I am on it.
Has this been your experience? Any information you can provide would be extremely helpful, as well as any sites I can go to on the internet. thank you again, Nancy

Re: Re: Re: cme
Posted: 2008-02-24 08:57:41 By nancy j
According to my doc, the OCT didn't show as much as the dye test with me, which surprised him, so he used both several times during the course of treatment. Was the Diamox you took in eye drop or pill form? I don't believe I have ever been treated with this medication, and will ask about it. I have had drops, injections, and now Prednisone and Sulfasalazine. Not good, long term. I am hoping, beyond all hope, that I will not have to be on immunosuppresant drugs forever. Thanks for your input.

Re: Re: Re: Re: cme
Posted: 2008-02-24 13:23:58 By Darran Z
Diamox (acetazolamide) is an oral medication. Depending upon the dosage, you take it morning and night. There are some drawbacks to this, as most people with side-effects feel fatigued, w hich can be aleviated by taking potassium supplements or eating LOTS of bananas and OJ. You feel tingling in your fingers and toes which is harmless and goes away as you continue the medication. It can screw up your taste buds especially if you are a pop drinker! Carbonated drinks are blah until things improve. You can have a slight metalic taste to some foods but I didn't notice it much. The Diamox Sequels (time released) helped alot in many of the above side-effects.

Darran

Re: Re: Re: Re: Re: cme
Posted: 2008-02-24 18:33:56 By nancy j
I am scheduled for a second opinion this Thursday. Although I'm sure my doctor has done everything possible, and correctly, I just want to make sure. I will ask about all these other medications I'm hearing about. I presume that your CME is/was secondary to RP. Are you much better nowadays with regards to CME?

Re: Re: Re: Re: Re: Re: cme
Posted: 2008-02-24 18:43:15 By Darran Z
CME is always secondary to RP, it's not a direct cause of RP, if that is what you are asking. In other words, RP and CME are not linked together. There is no known cause of CME.

I suggest you Google CME and treatment options so you know what is out there. But quite frankly, I'm surprised at the route your doctor went.

Darran

Re: Re: Re: Re: Re: Re: Re: cme
Posted: 2008-02-24 19:17:25 By nancy j
I have looked and looked on-line and the picture is pretty dismal. My feeling is that my doctor is struggling with my case and so sent me to the Rheumatologist for the next level of treatment. Were you ever sent to a Rheumatologist or did your doc stay with you until you were doing better? I will be glad when I get the second opinion on Thursday. I'll be going to a terrific doc at Wills Eye Hospital, a very good place here in Philadelphia.

Re: Re: Re: Re: Re: Re: Re: Re: cme
Posted: 2008-02-24 20:07:51 By Darran Z
Nope, never was sent to anyone. My doc was able to treat it until CME went away.

Who are you seeing? Dr. Jacobsen? If you could see him, I'd suggest going to him.

All of my ophthalmologists are FFB Researchers/Clinicians. So I've been with the best around. One is currently a Vice-Chairman of the FFB Scientific Advisory Board and my current is on that Board. Dr. Jacobsen is also on that same board and I have heard alot of positives about him.

Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: cme
Posted: 2008-02-24 22:45:05 By Darran Z
Scheie Eye Institute is part of the University of Pennsylvania health system. I do beleive it's located in the Penn Presbyterian Hospital.

http://pennhealth.com/ophth/locations/presby/

Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: cme
Posted: 2008-02-24 22:51:18 By nancy j
Thanks for the information. Maybe I'll try to contact them. I just printed something on Jacobson, the doctor you mentioned.

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