I wanted to check to see if anyone is using the drug Cellcept I have had...

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  • Colleen, how long have you been taking it? Does it seem to be helping? Thanks!

  • Sharon, I've been taking it for about 2 months. I'm not sure if it's helping. I had a gallium scan last month and was told that I didn't have active sarc in the lungs and lymph nodes, which is great, but I still have all of my symptoms and they have been worse the last month. And I was diagnosed with my 3rd bout of Uveitis a little over a month ago. My dr thinks I have an additional auto immune disease going on too. I'm sorry I'm not much help as to whether or not it's helping. I'm just as confused as everyone...lol.

  • No need to be sorry, I understand fully. Thanks again for what you could share!

  • I took Cellcept for about three months. I thought that I felt some better. But because of headaches my doctor pulled it. I have bee on Imuran now for about 6 months and have noticed that I am getting around better and able to get out a few days a week. Before I was in bed or on the couch in pain. Now I am doing better.

  • I took Cellcept for about 1 1/2 years. I didn't find that it helped at all and since it comes with such serious risks I stopped taking it. I was told it could take up to 6 months to start working but in my case it never did. I had optical involvement as well and was on 60-100mg of Prednisone for almost five years.

  • Thanks Connie & Kara! I really appreciate the info.

  • I just found out I am starting Cellcept tomorrow....am being taking off of Methotrexate. Thanks for all of these responses, they are helpful in somehwat alleviating the fear of the unkown.

  • Sharon not sure if you can help but ive had this horrible round blurred patch in my right eye every now and then it goes and then ive had it in the other eye, but its been in my right eye for months now, you can see through the foggy patch but you cant make what you see out realy anoying - went optitians and gp they said it wasnt sarc and optition didnt give me anything for it ???

  • Emma, no I have not had this happen. I have the Optic Neuritis, which has caused me to lose most of my sight in my left eye, my vision is very blurred and I cannot see color. Most everything is white, gray, or black. My right eye so for is good. I did get confirmation that the sarcoidosis has caused this. Good luck I hope things improve with your eyes.

  • thanks sharon and good luck xx