Please login to post a response.

• Retinoschisis
• Posted: 2009-09-22 21:29:01 By Lucia D
• My son is 9yrs old and was diagnosed with retinoschisis at Bascom Palmer (Dr. Berrocal). He tried the Trusopt drops for about 3 months but his vision didn't improve. He also reported increased burning in his eyes when the drops were applied. He was just recently started on Neptazane (oral medication). He had a follow-up with the retinal specialist after 1 month of taking the medication and his vision improved from 20/80 to 20/40 on his right eye and 20/70 on the other eye. He is still taking the medication and I'm scheduled to go back in December 2009.
  How is your son's vision now. Has he had any hemmorage or retinal detachments?
  Good luck with everything.
  
  Lucia

• Neptazane
• Posted: 2009-09-23 17:15:36 By Michael P
• Hi Lucia,
  
  I appreciate your post and am very glad that your son is responding to Neptazane. However, I want to let others know the difference between the oral Neptazane and the eye drop Dorzolamide.
  
  I am not a doctor or pharmasist so please do your own research and consult with your physician.
  
  First, the Neptazane is an oral pill taken a few times a day. Normal adult doses are 500mg - 1000mg two to three times a day. Children's dosage is determined by weight. The dosing is going to be 100's of miligrams a day.
  
  Dorzolamide is dispensed 3-drops each eye during the day. Trusopt is a 2% solution. According to the label information posted on the internet testing indicated that a 2mg pill taken daily is equivalent to three topical drops daily.
  
  According to my eye doctor, the side effects are more serious with the pill verses the drop. I beleive this is due to the relatively small amount of the drug (2mg) that actually is active in the body when taking drops.
  
  If considering the oral form please talk seriously with your doctor about the risks-they are serious and on the label for both drugs.
  
  Trusopt also comes in a newer drug called Azopt that is said to cause less burning. Some on this board have indicated that their son's are using Azopt. It may be best to give Azopt a try and see if it is tolerated.
  
  Now, my retina specialist recently attempted to put me on an oral product to see if my vision would improve. I was unable to tolerate the product and had to discontinue use even at minimal levels.
  
  I think that success with Trusopt/Dorzolamide is leading to the next step: finding out if other forms or versions improve vision.
  
  Finally, I continue to use Dorzolamide (my pharmacy is now using the generic version of Trusopt). And I believe as Dr Fishman's report has indicated that many with CXLRS will benefit from the drops. However, as indicated not everyone will see results. Regardless, I hope that even if visual acuity is not improved-the cysts that are a big problem may shrink to insignificance. Overall, the eye will be healthier with use if the cysts shrink. I can not get behind the oral versions of this type of drug, mainly because of the more serious side effects and risks.
  
  All the best, my prayers are with you parents and the very difficult decisions you need to make for your loved ones.
  
  Mike
  
  

• Posted: 2009-09-24 21:40:57 By Lucia D
• Mike I appreciate your input. I wanted to know how your vision is now and how old are you. I've asked my son's retinal specialist regarding the azopt drops. The doctor explained to me given the fact that he was on Trusopt 2% and had no benefits (not only the visual acuity but also the cyst itself)the Azopt drops which are less potent 1% would probably not be helpful. He is on 25 mg of the Neptazane 25mg once a day. He has had no side affects. He'll be going back in December for another follow-up and see if there is an additional improvements. I see that there is a clinical trial being done at the University of Illinois (Dr Fishman's). I'm glad to see that there is some research being done. I did take part in the geno/phenotype study conducted by the National Eye Institute and hope that to see more studies. I hope that someday soon that there will be a cure or treatment for this condition.
  Wish you the best.
  Lucia

• A question answered
• Posted: 2009-09-25 16:14:41 By Michael P
• HI Lucia,
  
  My vision is stable but has not been good for a long time. Left eye 20/100 on a good day to 20/200 if the nistagnus is bad. The right eye is just blur probably 20/400 or so. The vision has been stable for years and the nistagnus is controlled/improved by Trusopt. The OCT has shown that the cysts are virtually gone but the layers may not have sealed.
  
  I live in the Detroit, MI areas, am 51 in October, and married 22 years with two children. My son does not have CXLRS but my daughter is a carrier.
  
  Neptazane is one of a number of medications used to treat glaucoma. I do hope that it is successful for your son. That would provide opportunity for others as well as a possibility that the treatment may improve on Dorzolamide.
  
  Please let us know in December.
  
  Mike

• Posted: 2009-12-18 02:17:45 By
• lucia & mike...
  yes my doctor told me also that if trusopt does not work that azopt would not be useful either as it is less potent. He advised if my son couldnt bear the burning of the drops there was one less painful that could be tried, but would also be less potent, Azopt. We continue to try to get through the Trusopt drops till March to see if the schisis cavities have changed in any way. He also told me that the drops would not improve my sons vision, only possibly reduce the schisis cavity more towards normal eye anatomy for the day there is a real treatment.

• Posted: 2009-12-18 02:11:02 By
• lucia,
  Yes we saw Dr Berrocal also, We Loved her. Unfortunately we moved to the midwest. We did get established with Univ of Iowa specialist, and he agreed with Dr berrocal on Trusopt. He started them in One eye for a month, then we went back and repeated the OCT scan and the schisis cavity was unchanged. Dr Stone said there have been a few cases where the response wasnt as immediate. So we are now doing drops 3x day in both eyes for 4 months, go back in march for repeat scans. He said if they fail he may try one other drug. Honestly when we went for our consult with him, my sons vision was the best it has ever been (20/80). Yes he has had several hemmorages in the left eye, his last in february took months to regain vision. He is a trooper thou...his spots, lines and floaters are so common, he can even tell when his glasses are beyond filthy, they always see blood in his eyes. Those drops do burn badly, i feel horrible for them, he has to take them 5 min apart to deal with each eye, and occasionally still cries for a real bad drop. Thanks for the info, and keep with Dr berrocal, she honestly was awesome. I do like this Dr stone also thou...but the 4 hour drive is alot more boring going to iowa than sunny miami. Good luck with your son also! My son just turned 9 also a couple months ago.