Guest guest Posted December 8, 2008 Report Share Posted December 8, 2008 I am currently using 1000 mg cellcept twice a day. I have not been on it long enough to really give an informed opinion, but doc seems happy with the results so far. will update as I learn more. Later, dx 08 pending > > Subject: Cellcept > To: Breathe-Support > Date: Monday, December 8, 2008, 11:06 PM > Anybody have ay knowledge of Cellcept? Someone on the > caregiver's > forum has said that she knows of someone who had a good > result from > using it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2008 Report Share Posted December 9, 2008 I just started Cellcept today 500 mgs twice a day for 2 weeks then 1000 mgs twice a day onwards after the first 2 weeks, blood work has to be done in the meantime, i have to start an antibiotic because it decreases the immune system when i go to 1000 mgs twice a day, i will start decreasing prednisone by 5 mgs every week until i get down to 10 mgs it's was in eye opening to read your post since we have something in common with the meds i am eager to hear how you are doing with the cell cept Pink Joyce IPF 3/06 Pennsylvania Donate Life> From: Barbara <bamny (AT) yahoo (DOT) com>> Subject: Cellcept> To: Breathe-Support@ yahoogroups. com> Date: Monday, December 8, 2008, 11:06 PM> Anybody have ay knowledge of Cellcept? Someone on the> caregiver's > forum has said that she knows of someone who had a good> result from > using it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2008 Report Share Posted December 9, 2008 Barbara just started Cellcept today eager to see what happens there is someone in this group who uses it and had positive results i don't know who it is if you do a search for cellcept in the main web site, you might find the original posts Pink Joyce IPF 3/06 Pennsylvania Donate Life Subject: CellceptTo: Breathe-Support Date: Monday, December 8, 2008, 11:06 PM Anybody have ay knowledge of Cellcept? Someone on the caregiver's forum has said that she knows of someone who had a good result from using it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2008 Report Share Posted December 9, 2008 I have been using Cellcept for a year now. For the last 2 visits, PFTs have shown an improvement. Doc just upped the dosage to 3000 mg a day with the hope of getting off the prednisone. Good luck Sue D. 62 yr old, Fibrotic NSIP dx 9/07, VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 Because the cellcept affects the immune system, the docs prescribed an antibiotic with it. I am waiting a few days before I start taking it, just in case of a reaction to something, i want to know if it is the cell cept or the antibiotic. Pink Joyce IPF 3/06 Pennsylvania Donate Life From: Sue Dassel <sdassel (AT) verizon (DOT) net>Subject: Re: CellceptTo: Breathe-Support@ yahoogroups. comDate: Tuesday, December 9, 2008, 12:05 PM I have been using Cellcept for a year now. For the last 2 visits, PFTs have shown an improvement. Doc just upped the dosage to 3000 mg a day with the hope of getting off the prednisone. Good luck Sue D. 62 yr old, Fibrotic NSIP dx 9/07, VA Barbara McD IPF, Sept 08 Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 They are really lowering your predisone fast. Think I am jealous;)!! According to doc, I will be on this for at least a year, started at 40, down to 20 this month and will decrease to 15 for the next 9 months. One thing that he emphasized was that with prednisone you need to have a calcium supplement with vitamin d, as the meds leach calcium from your bones. are you on them? ask doc if not. Just in case. Later, dx 08 pending > > > From: Barbara > > Subject: Cellcept > > To: Breathe-Support@ yahoogroups. com > > Date: Monday, December 8, 2008, 11:06 PM > > Anybody have ay knowledge of Cellcept? Someone on the > > caregiver's > > forum has said that she knows of someone who had a > good > > result from > > using it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 /Joyce Good point on the lowering of the prednisone. The lowering is a matter of condition and status but also very much a matter of our personal tolerance and response. Doctors can create schedules but our bodies can say different. So, Joyce, be careful and aware if the speed of lowering causes too many side effects and it needs to be more gradual. , you might discuss along the way based on your progress if its time to lower further. Also, there are points at which it does get more difficult and some never get below a certain point. 10 mg seems to be the most common of those levels. Your doctor will need feedback. > > > > > From: Barbara bamny (AT) yahoo (DOT) com> > > > Subject: Cellcept > > > To: Breathe-Support@ yahoogroups. com > > > Date: Monday, December 8, 2008, 11:06 PM > > > Anybody have ay knowledge of Cellcept? Someone on the > > > caregiver's > > > forum has said that she knows of someone who had a > > good > > > result from > > > using it. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 the last time they weaned me down from 40 mgs, they did it by 10 mgs per month I guess because of the cellcept they can do it faster will find out in a few weeks yes I am on calcium/vit D supplements twice a day pulmonary doc took me off of evista and put me on Fosamax, i think it is 70 or 80 mgs because it works better with the prednisone/calcium issues Pink Joyce IPF 3/06 Pennsylvania Donate Life> > > From: Barbara <bamny (AT) yahoo (DOT) com>> > Subject: Cellcept> > To: Breathe-Support@ yahoogroups. com> > Date: Monday, December 8, 2008, 11:06 PM> > Anybody have ay knowledge of Cellcept? Someone on the> > caregiver's > > forum has said that she knows of someone who had a> good> > result from > > using it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 Actually, I am being weaned by 10's. started at 40 for 2 months, moved down to 30 for one month, just moved to 20 for this month and next will be 15, or so they say. They have also increased my cellcept and added vitamin d, on top of the calcium with d that I already take. > > > > > From: Barbara > > > Subject: Cellcept > > > To: Breathe-Support@ yahoogroups. com > > > Date: Monday, December 8, 2008, 11:06 PM > > > Anybody have ay knowledge of Cellcept? Someone on > the > > > caregiver's > > > forum has said that she knows of someone who had > a > > good > > > result from > > > using it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 Actually, I am being weaned by 10's. started at 40 for 2 months, moved down to 30 for one month, just moved to 20 for this month and next will be 15, or so they say. They have also increased my cellcept and added vitamin d, on top of the calcium with d that I already take. > > > > > From: Barbara > > > Subject: Cellcept > > > To: Breathe-Support@ yahoogroups. com > > > Date: Monday, December 8, 2008, 11:06 PM > > > Anybody have ay knowledge of Cellcept? Someone on > the > > > caregiver's > > > forum has said that she knows of someone who had > a > > good > > > result from > > > using it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2008 Report Share Posted December 14, 2008 Joyce Just one more example of us needing to track and provide feedback to the doctors. Sometimes hard to figure out with all the variables we have, but still worth the effort in trying. For instance are changes meds or weather or indoor humidity or what we've been doing. But, we know our bodies and our changes best. > > Interesting observation: > Prior to going on Cellcept, i was on 40 mgs prednisone. O2 SATS were 95 - 98 depending on activity. > Since starting Cellcept, O2 SATS have been much lower. 92 - 95 depending on activity. > i think i am coughing less. jerry thinks i am coughing the same. > > need to contact pulmonary doc > > scheduled to see transplant doc on Tuesday Dec 16th > > > Pink Joyce IPF 3/06 Pennsylvania > Donate Life > Quote Link to comment Share on other sites More sharing options...
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