Guest guest Posted September 4, 2007 Report Share Posted September 4, 2007 > > Hello everyone, > > My doc is telling me one thing, my body is telling me another. I'm on > 2g of cellcept/day...1g in the morning & another at night and from the > looks of the lesions on my hands, the sarc is active again. But > that's besides the point. > > I'm wondering what type of side effects those of you who have taken > cellcept have experienced. I'm dealing with terrible insomnia, > peripheral edema (swollen, painful hands & feet) and tremendous hip / > low back pain. My doc tells me he has never heard of cellcept causing > these side effects even though I pointed out studies by Roche which > indicate that similiar problems were reported by more than 25% of the > patients in a controlled test. If these aren't side effects than I > have to wonder out loud if the sarcoid has inflitrated the joints as > it sometimes does. The insomnia is anyone's guess... > > Thanks to everyone in advnce. > > Peace, Tony > Dear Tony My name is Kathy I have been on cellcept (3000) mg per day for about a year. my neuro told me I might experience insomnia. I was lucky I had no side effects. As for joint pain-I had that years before I took cell cept. I also lost the ability to stand walk so see your doctor as soon as you can. Hope you're better soon, no matter what-keep walking. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2007 Report Share Posted September 4, 2007 > > Hello everyone, > > My doc is telling me one thing, my body is telling me another. I'm on > 2g of cellcept/day...1g in the morning & another at night and from the > looks of the lesions on my hands, the sarc is active again. But > that's besides the point. > > I'm wondering what type of side effects those of you who have taken > cellcept have experienced. I'm dealing with terrible insomnia, > peripheral edema (swollen, painful hands & feet) and tremendous hip / > low back pain. My doc tells me he has never heard of cellcept causing > these side effects even though I pointed out studies by Roche which > indicate that similiar problems were reported by more than 25% of the > patients in a controlled test. If these aren't side effects than I > have to wonder out loud if the sarcoid has inflitrated the joints as > it sometimes does. The insomnia is anyone's guess... > > Thanks to everyone in advnce. > > Peace, Tony > Dear Tony My name is Kathy I have been on cellcept (3000) mg per day for about a year. my neuro told me I might experience insomnia. I was lucky I had no side effects. As for joint pain-I had that years before I took cell cept. I also lost the ability to stand walk so see your doctor as soon as you can. Hope you're better soon, no matter what-keep walking. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2007 Report Share Posted September 4, 2007 Thanks Kathy, The walking isn't the hard part right now...staying upright and holding things in my hands is. I've been considering changing docs for a while. If it wasn't for his 'crew' of top notch PA's I would have made the change by now. I saw him this morning & he's back to the 'you have new symptoms so you must be depressed' song because " I have hundreds of patients on Cellcept and none of them have active sarc again. Boy, was he humbled when I showed him the lesions. Now he wants to send me for the same series of test I had done less than 6 months ago. Time to move on. Peace, Tony > > > > Hello everyone, > > > > My doc is telling me one thing, my body is telling me another. I'm on > > 2g of cellcept/day...1g in the morning & another at night and from the > > looks of the lesions on my hands, the sarc is active again. But > > that's besides the point. > > > > I'm wondering what type of side effects those of you who have taken > > cellcept have experienced. I'm dealing with terrible insomnia, > > peripheral edema (swollen, painful hands & feet) and tremendous hip / > > low back pain. My doc tells me he has never heard of cellcept causing > > these side effects even though I pointed out studies by Roche which > > indicate that similiar problems were reported by more than 25% of the > > patients in a controlled test. If these aren't side effects than I > > have to wonder out loud if the sarcoid has inflitrated the joints as > > it sometimes does. The insomnia is anyone's guess... > > > > Thanks to everyone in advnce. > > > > Peace, Tony > > > > > > Dear Tony > > My name is Kathy > I have been on cellcept (3000) mg per day for about a year. my neuro told me I might > experience insomnia. I was lucky I had no side effects. As for joint pain-I had that years > before I took cell cept. I also lost the ability to stand walk so see your doctor as soon as > you can. Hope you're better soon, no matter what-keep walking. > > Kathy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2007 Report Share Posted September 4, 2007 Thanks Kathy, The walking isn't the hard part right now...staying upright and holding things in my hands is. I've been considering changing docs for a while. If it wasn't for his 'crew' of top notch PA's I would have made the change by now. I saw him this morning & he's back to the 'you have new symptoms so you must be depressed' song because " I have hundreds of patients on Cellcept and none of them have active sarc again. Boy, was he humbled when I showed him the lesions. Now he wants to send me for the same series of test I had done less than 6 months ago. Time to move on. Peace, Tony > > > > Hello everyone, > > > > My doc is telling me one thing, my body is telling me another. I'm on > > 2g of cellcept/day...1g in the morning & another at night and from the > > looks of the lesions on my hands, the sarc is active again. But > > that's besides the point. > > > > I'm wondering what type of side effects those of you who have taken > > cellcept have experienced. I'm dealing with terrible insomnia, > > peripheral edema (swollen, painful hands & feet) and tremendous hip / > > low back pain. My doc tells me he has never heard of cellcept causing > > these side effects even though I pointed out studies by Roche which > > indicate that similiar problems were reported by more than 25% of the > > patients in a controlled test. If these aren't side effects than I > > have to wonder out loud if the sarcoid has inflitrated the joints as > > it sometimes does. The insomnia is anyone's guess... > > > > Thanks to everyone in advnce. > > > > Peace, Tony > > > > > > Dear Tony > > My name is Kathy > I have been on cellcept (3000) mg per day for about a year. my neuro told me I might > experience insomnia. I was lucky I had no side effects. As for joint pain-I had that years > before I took cell cept. I also lost the ability to stand walk so see your doctor as soon as > you can. Hope you're better soon, no matter what-keep walking. > > Kathy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2007 Report Share Posted September 4, 2007 Tony, I can't speak to the Cellcept issue, but I'm curious as to how your doctor responded when you told him about the Roche studies? Did he just ignore it, change the subject, say he'd look into it? Ramblin' Rose Moderator A merry heart is good medicine. Proverbs 17:22 Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Cellcept questionsDate: Tue, 04 Sep 2007 16:42:32 -0000 Hello everyone,My doc is telling me one thing, my body is telling me another. I'm on 2g of cellcept/day...1g in the morning & another at night and from the looks of the lesions on my hands, the sarc is active again. But that's besides the point.I'm wondering what type of side effects those of you who have taken cellcept have experienced. I'm dealing with terrible insomnia, peripheral edema (swollen, painful hands & feet) and tremendous hip / low back pain. My doc tells me he has never heard of cellcept causing these side effects even though I pointed out studies by Roche which indicate that similiar problems were reported by more than 25% of the patients in a controlled test. If these aren't side effects than I have to wonder out loud if the sarcoid has inflitrated the joints as it sometimes does. The insomnia is anyone's guess...Thanks to everyone in advnce.Peace, Tony Test your celebrity IQ. Play Red Carpet Reveal and earn great prizes! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2007 Report Share Posted September 4, 2007 Tony, I can't speak to the Cellcept issue, but I'm curious as to how your doctor responded when you told him about the Roche studies? Did he just ignore it, change the subject, say he'd look into it? Ramblin' Rose Moderator A merry heart is good medicine. Proverbs 17:22 Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Cellcept questionsDate: Tue, 04 Sep 2007 16:42:32 -0000 Hello everyone,My doc is telling me one thing, my body is telling me another. I'm on 2g of cellcept/day...1g in the morning & another at night and from the looks of the lesions on my hands, the sarc is active again. But that's besides the point.I'm wondering what type of side effects those of you who have taken cellcept have experienced. I'm dealing with terrible insomnia, peripheral edema (swollen, painful hands & feet) and tremendous hip / low back pain. My doc tells me he has never heard of cellcept causing these side effects even though I pointed out studies by Roche which indicate that similiar problems were reported by more than 25% of the patients in a controlled test. If these aren't side effects than I have to wonder out loud if the sarcoid has inflitrated the joints as it sometimes does. The insomnia is anyone's guess...Thanks to everyone in advnce.Peace, Tony Test your celebrity IQ. Play Red Carpet Reveal and earn great prizes! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2007 Report Share Posted September 5, 2007 Hi Rose, Doc basically blew the study saying the internet is full of mis- information. True but guess he forgot that I work in the excessively regulated medical product field. True, as Mark Twain once said, 'there are lies, damn lies, and then there are statistics " . Yes, statistics can be and are sometimes manipulated. So be it...such a high prevalence of a side would be difficult to hide. His next response was a suggestion for another medication, this one for depression...manic depression. He also wants me to have another gallium scan & biopsy of a skin lesion. Both of these test were performed within the last six months; both returned positive for sarcoid. Enough is enough...I've started my search for a new physician. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2007 Report Share Posted September 5, 2007 Hi Rose, Doc basically blew the study saying the internet is full of mis- information. True but guess he forgot that I work in the excessively regulated medical product field. True, as Mark Twain once said, 'there are lies, damn lies, and then there are statistics " . Yes, statistics can be and are sometimes manipulated. So be it...such a high prevalence of a side would be difficult to hide. His next response was a suggestion for another medication, this one for depression...manic depression. He also wants me to have another gallium scan & biopsy of a skin lesion. Both of these test were performed within the last six months; both returned positive for sarcoid. Enough is enough...I've started my search for a new physician. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.