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• CME
• Posted: 2009-07-05 19:17:32 By Ingrid K
• Anyone here who has RP who has developed CME as a result? How are you be treated? Has anyone used immune-supprasent therapy to keep the cysts under control as oppose to Diamox or steriod therapy?

• Posted: 2009-07-05 23:19:44 By Darran Z
• CME is common in RP but not a direct result of it. This is an unrelated condition. CME does not have any known cause.
  
  Diamox is usually the first round to go. Often someone can use Trusopt eye drops which is the diamox equivelant only in an eye drop format. As opposed to a systematic pill.
  
  For immuno-suppresant, I have hard of one other doctor who is doing this and is the only doctor I am aware of. Are you seeing Dr. Heckenlively? He seems to beleive that it's an RP that is an auto-immune thing, but that is very very rare. There is little documentation on this so I have no idea where this doctor is headed but I have seen it happen.
  
  CME comes and go in RP. Sometimes they are hard to treat sometimes they are not. But since any one can get CME and that anyone can have a difficult time, ti's not blamed on RP.
  
  Darran

• thanks
• Posted: 2009-07-08 21:37:49 By Ingrid K
• Darran,
  Yes, I have seen Dr. H, very good Doctor and researcher. I know he is not the only one in this feild and that is why I wanted to see if anyone else has seen their RP specailsts who are dealing with CME and what they are offering them or perhaps a new drug or therapy is available.
  
  Occording to Dr. H, I have RP, even though my gene has not been found. I guess that is one aspect why Dr. H is looking into other reasons people develope RP or RP like symptoms.
  
  I have been diagnosed about 12 years ago and about 6 years ago, I started to get the CME on both eyes. Initially was treated with both steriod eye injections and took oral version of it as well. Would you know, my bad luck, I got Cataracts from the medication. So now they Cataracts are worsen, so between the CME and Cataracts, my vision is bad. The RP portion of it, is actually not too bad but my deepest concern is the central vision.
  
  For the Cataract, I can opt to do the operation and hope it will help my vision some. However for the CME, I need something other than Diamox to help me.
  
  Now Dr. H does suggest therapy with Autoimmune supperssion but, the side effects are great and it is only one study that had some success with this but I wanted to know if anyone had tried that and had improvement. Moreover, I hope there are some new medications or therapy that is being developed to cure or at least in long term hult the reoccurance of CME. Any info is appreciated.

• Posted: 2009-07-10 22:41:07 By Darran Z
• CME is tough to deal with, whether you have RP or not. That's the basic thing.
  
  Steriod injections do case cataracts. I have seen that happen in other people.
  
  Even though yoru gene isn't identified, genetics is a relatively new area. We know alot but not enough. Roughly half the genes for autosomal recessive inheritance (family histories that don't have RP) are not known at this time. You will get a different answer if you saw an RP specialist that is both board certified in genetics an ophthalmology.
  
  One would only suspect RP to be an autoimmune cause IF there is some form of auto=immune disease in teh family. In my friend's case, there is and this is why she is now on this auto-immune approach to deal with CME. But you don't sound like you have that, and I would be very suspecious of Dr. H if he pursued this.
  
  There are a number of eye drops used to deal with this. The side effects are less and not as systematic as an oral medication.
  
  What I was told when I first was diagnosed with CME 9 years ago was that some people with RP respond well with Diamox, others do not. Now this is coming from a highly respected ophthalmologist (he's on the FFB Scientific Advisory Board here) and is both certified in ophthalmology and genetics. One of the best docs there are in the world. So I would take it that if Diamox is not working , then you're falling into a catagory that does not do well with it.
  
  What are your options? I do not konw. Try some of the eye drops (Trusopt which is the equivelent of Diamox but if that isn't working Tursopt may nto work. Trying Nevanac or even a steriod eye drop, like Prednisolone).
  
  Darran