Guest guest Posted August 11, 2009 Report Share Posted August 11, 2009 I haven't been on here in so long I feel like I should introduce myself. I was diagnosed with neurosarc in Oct 2007 after about 6 months of continually worsening symptoms. Initially, I was on pred but weaned off of it in Feb '09 and now take only CellCept for the sarc. Not long ago, my provider told me I would have to switch to the generic form unless I wanted to pay $500.00/month. Yeah, right! So, I have now been on the generic " equivalent " for about 3 months and am having a lot of GI problems which seem to be getting worse. (I had very few side effects on the brand CellCept and they were only temporary) Have any of you had a similar experience? Any thoughts on what this might be if is isn't related to the meds? Thanks, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2009 Report Share Posted August 11, 2009 My wife who has neurosarcoidosis was switched from Methotrexate to Cellcept recently. We have run into severe side effects of nausea etc. She is on the generic. Here in PA unless the doctor specifically states no generic that is what you get. They had to cut her dose from 1000mg twice a day down to 500mg twice a day. We see the doctor next week and will discuss what we do. I just know that hse can't continue to have the nausea, which has subsided with the lower dose, but.....will the lower dose help the problem. My concern is that the 1000mg was suppose to do the job, and it is causing side effect issues. Will the lower dose work at all??? Always something. mattSubject: CellCeptTo: Neurosarcoidosis Date: Tuesday, August 11, 2009, 10:35 AM I haven't been on here in so long I feel like I should introduce myself. I was diagnosed with neurosarc in Oct 2007 after about 6 months of continually worsening symptoms. Initially, I was on pred but weaned off of it in Feb '09 and now take only CellCept for the sarc. Not long ago, my provider told me I would have to switch to the generic form unless I wanted to pay $500.00/month. Yeah, right! So, I have now been on the generic "equivalent" for about 3 months and am having a lot of GI problems which seem to be getting worse. (I had very few side effects on the brand CellCept and they were only temporary) Have any of you had a similar experience? Any thoughts on what this might be if is isn't related to the meds? Thanks, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2009 Report Share Posted August 12, 2009 Sharon if you don't have insurance go to NeedyMeds.org. Brand name Celcept is on their list and there is also a $100 coupon. You may already know about needymeds.org, but the pharmaceutical companies run it and if you don't have insurance that pays for prescriptions you can fill out usually a 1 page form take it to your doctor and receive a three months supply of your medicine from $0 to the most I have ever seen it cost 6.50 per month. Connie Subject: CellCeptTo: Neurosarcoidosis Date: Tuesday, August 11, 2009, 10:35 AM I haven't been on here in so long I feel like I should introduce myself. I was diagnosed with neurosarc in Oct 2007 after about 6 months of continually worsening symptoms. Initially, I was on pred but weaned off of it in Feb '09 and now take only CellCept for the sarc. Not long ago, my provider told me I would have to switch to the generic form unless I wanted to pay $500.00/month. Yeah, right! So, I have now been on the generic "equivalent" for about 3 months and am having a lot of GI problems which seem to be getting worse. (I had very few side effects on the brand CellCept and they were only temporary) Have any of you had a similar experience? Any thoughts on what this might be if is isn't related to the meds?Thanks,Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2009 Report Share Posted August 13, 2009 I too was on brand name cellcept. I took it for two months with good results and minimal side effects. Then when the generic became available, my insurance company made me switch. The generic (I took the one made by Teva)did not work like the brand name. I had more side effects, and after repeat MRI and CT have developed new lesions and a return of symptoms. The brand name would cost me 700 dollars. My doc has switched me to methotrexate/plaquenil/pred combo for now. I hope this works and I hope they are able to find a treatment regimen that helps you to feel better!!! Take Care! Dawn > > > > Subject: CellCept > To: Neurosarcoidosis > Date: Tuesday, August 11, 2009, 10:35 AM > > > > > > > I haven't been on here in so long I feel like I should introduce myself. I was diagnosed with neurosarc in Oct 2007 after about 6 months of continually worsening symptoms. Initially, I was on pred but weaned off of it in Feb '09 and now take only CellCept for the sarc. Not long ago, my provider told me I would have to switch to the generic form unless I wanted to pay $500.00/month. Yeah, right! So, I have now been on the generic " equivalent " for about 3 months and am having a lot of GI problems which seem to be getting worse. (I had very few side effects on the brand CellCept and they were only temporary) Have any of you had a similar experience? Any thoughts on what this might be if is isn't related to the meds? > > Thanks, > Sharon > Quote Link to comment Share on other sites More sharing options...
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