Help with Cyclosporine 1%

[Robin39]

Hi Everyone, I am brand new here but have been reading and finding comfort in these posts for the past two years. I have been on a dry eye roller coaster which has ended with a diagnosis of an inflammation issue called sarcoidosis. Anyway, I went to see a specialist in Maryland and she has started me on cyclosporine 1% which I had to get from a compounding pharmacy. I am finding it impossible to tolerate and am wondering if anyone has experience or advice with this drug? It seems like this is the last thing we haven't tried and I'm desperate to make it work but it burns so much when I put in the drop that my eyes get even more red and inflamed for hours until it is time for the next dose. Any insight is appreciated and thank you!

Robin

[GeorgeT]

Hi,

I have been using preservative free compounded cyclosporine(0.1%) for about 4 years with success. I cannot tolerate restatis because of the castor oil. My advice is to try 0.1 or 0.5% first to see if you can tolerate. Then the test vehicle (solvent) can be changed as in my case and you can achieve very good results. I use as solvent GC 0.625% but I do not know what GC stands for. Which pharmacy did you use ?

Feel free to send me a message!

All the best!!
George

[Robin39]

Hi Thanks for the advice. I talked to my doctors office and they don't want to drop me down yet, they want to give it another week. I'm not doing great, but I am doing better then I was. The pharmacy I use is a compounding pharmacy in NJ, they've been working with the compounding pharmacy that John Hopkins uses to make sure everything is right. My drops are mixed with artificial tears. Fingers crossed this will be worth it in the long run! Thanks again! Robin

[GeorgeT]

Hi Robin, I am wondering if you can share the info for the compounding pharmacy and how much do they charge. Also are your drops in a suspension? I had a suspension solution from Connecticut but did not work for me. Take care!! George