Guest guest Posted April 23, 2011 Report Share Posted April 23, 2011 Oh I am ecstatic for you, that is fabulous news. I am so glad it worked out. To: Neurosarcoidosis Sent: Fri, April 22, 2011 8:14:13 PMSubject: CellCept GUESS WHAT?!!! My immunologist just called (yes, on Easter Saturday) to tell me that the hospital has approved my CellCept prescription, and this means that THE HOSPITAL WILL PAY FOR IT!!!! It won't cost me a penny!!!! I still can't quite believe it!!!!!!! So I just have to get the medication from the hospital pharmacy each month, but it's completely covered. My god, I'm so relieved ... I've been panicking and sick with worry about it all week.I kind of wish he'd explained better last Monday about what "getting approval" meant - he never mentioned that that process would mean the hospital would cover the costs, he just said "It's very expensive", which implied that it would be expensive to *me*. I pick up the script and first batch on Wednesday, and then can start to taper off the Prednisolone again. My Eye Clinic results from last week showed some deterioration in my peripheral vision, but not a huge amount.Anyway! Best Easter Present Ever!Now I just have to hope that it WORKS, but that's another matter ... very very VERY relieved.xxoo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2011 Report Share Posted April 26, 2011 Yeah, that is so awesome, your doctor probably thought you already knew how the system worked, sometimes they just get in a hurry too, but all is well now. let us know when you start it. Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb Thanks! I'm still floating around, I'm so relieved!! I just rather wish my immunologist had though to explain the process a bit more clearly so I wasn't so panicked and depressed ALL frikkin' week! Now we just have to see how I go on the new med, and whether my poor old liver can cope with it .... but at least I can just focus on the medical stuff, and not be worrying about the money. xo > , that's great news! We'll cross our fingers AND pray that it works for you. > > Ramblin' Rose > Co-owner/Moderator > > " I child-proofed my home and they STILL get in! " (Bumper sticker) > > > > > > To: Neurosarcoidosis > > From: denise@... > > Date: Sat, 23 Apr 2011 10:14:13 +1000 > > Subject: CellCept > > > > GUESS WHAT?!!! My immunologist just called (yes, on Easter Saturday) to tell me that the hospital has approved my CellCept prescription, and this means that THE HOSPITAL WILL PAY FOR IT!!!! It won't cost me a penny!!!! I still can't quite believe it!!!!!!! > > > > So I just have to get the medication from the hospital pharmacy each month, but it's completely covered. My god, I'm so relieved ... I've been panicking and sick with worry about it all week. > > > > I kind of wish he'd explained better last Monday about what " getting approval " meant - he never mentioned that that process would mean the hospital would cover the costs, he just said " It's very expensive " , which implied that it would be expensive to *me*. I pick up the script and first batch on Wednesday, and then can start to taper off the Prednisolone again. My Eye Clinic results from last week showed some deterioration in my peripheral vision, but not a huge amount Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2011 Report Share Posted April 27, 2011 I picked up my CellCept this morning, and take my first dose in a few hours! 4 x 500 mg tablets / day, in two doses 12 hours apart ... here's hoping I don't get serious side effects, and it actually WORKS. Wouldn't THAT be a novelty?! I had another blood test today, too, to check on how my poor old liver is going, and blood counts etc. There is actually a co-payment for the medication, but it's only $27.40, which is FINE. That I can manage! The PBS (Pharmaceutical Benefits Scheme) generally works pretty well, the Australian government covers most medications to ensure all citizens (regardless of health insurance status) can have affordable access to medications. I don't have private health insurance, but in Australia you can manage quite well without it. I've had 2 Caesarians, a hip replacement (with the surgeon of my choice), and weeks in hospital that didn't cost me a cent (http://en.wikipedia.org/wiki/Pharmaceutical_Benefits_Scheme and http://en.wikipedia.org/wiki/Medicare_(Australia) if you wanted to find out more.) My immunologist had to apply for a special authority to get me the drug, he says that happens a lot as the immune-suppressants are generally only on the PBS for very specific diseases (eg CellCept is only on the PBS for organ transplant patients). His " rare and unusual immune disease patients " like me just need to have an authority from him to the PBS saying what condition we have, and why we need the drug, and it's generally approved. I have a permanent authority, so if the med works, it will be provided to me by the hospital for the low cost, for as long as I need it. Yay! And in a few days' time I can start to drop my Pred again, down by 10mg steps / week to 15 mg ... he wants me to stop at that level, though. My vision is still a bit worse than it has been for a while ... Fingers crossed for a good outcome this time around! xxoo > Yeah, that is so awesome, your doctor probably thought you already knew how the system worked, sometimes they just get in a hurry too, but all is well now. let us know when you start it. > > Marla > > " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb > > > > > > On Fri, Apr 22, 2011 at 11:53 PM, Sutherland wrote: > Thanks! I'm still floating around, I'm so relieved!! I just rather wish my immunologist had though to explain the process a bit more clearly so I wasn't so panicked and depressed ALL frikkin' week! > > Now we just have to see how I go on the new med, and whether my poor old liver can cope with it .... but at least I can just focus on the medical stuff, and not be worrying about the money. > > xo > > > > > , that's great news! We'll cross our fingers AND pray that it works for you. > > > > Ramblin' Rose > > Co-owner/Moderator > > > > " I child-proofed my home and they STILL get in! " (Bumper sticker) > > > > > > > > > > > To: Neurosarcoidosis > > > From: denise@... > > > Date: Sat, 23 Apr 2011 10:14:13 +1000 > > > Subject: CellCept > > > > > > GUESS WHAT?!!! My immunologist just called (yes, on Easter Saturday) to tell me that the hospital has approved my CellCept prescription, and this means that THE HOSPITAL WILL PAY FOR IT!!!! It won't cost me a penny!!!! I still can't quite believe it!!!!!!! > > > > > > So I just have to get the medication from the hospital pharmacy each month, but it's completely covered. My god, I'm so relieved ... I've been panicking and sick with worry about it all week. > > > > > > I kind of wish he'd explained better last Monday about what " getting approval " meant - he never mentioned that that process would mean the hospital would cover the costs, he just said " It's very expensive " , which implied that it would be expensive to *me*. I pick up the script and first batch on Wednesday, and then can start to taper off the Prednisolone again. My Eye Clinic results from last week showed some deterioration in my peripheral vision, but not a huge amount. > > > > > > Anyway! Best Easter Present Ever! > > > > > > Now I just have to hope that it WORKS, but that's another matter ... very very VERY relieved. > > > > > > xxoo > > > > > > ------------------------------------ > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > The Neurosarcoidosis Community > > > > > > > > > > > > Message Archives:- > > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > > > Members Database:- > > > Listings of locations, phone numbers, and instant messengers. > > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2011 Report Share Posted April 27, 2011 , You are in my prayers, I hope it works, and you can eventually get off all the Pred! Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb I picked up my CellCept this morning, and take my first dose in a few hours! 4 x 500 mg tablets / day, in two doses 12 hours apart ... here's hoping I don't get serious side effects, and it actually WORKS. Wouldn't THAT be a novelty?! I had another blood test today, too, to check on how my poor old liver is going, and blood counts etc. There is actually a co-payment for the medication, but it's only $27.40, which is FINE. That I can manage! The PBS (Pharmaceutical Benefits Scheme) generally works pretty well, the Australian government covers most medications to ensure all citizens (regardless of health insurance status) can have affordable access to medications. I don't have private health insurance, but in Australia you can manage quite well without it. I've had 2 Caesarians, a hip replacement (with the surgeon of my choice), and weeks in hospital that didn't cost me a cent (http://en.wikipedia.org/wiki/Pharmaceutical_Benefits_Scheme and http://en.wikipedia.org/wiki/Medicare_(Australia) if you wanted to find out more.) My immunologist had to apply for a special authority to get me the drug, he says that happens a lot as the immune-suppressants are generally only on the PBS for very specific diseases (eg CellCept is only on the PBS for organ transplant patients). His " rare and unusual immune disease patients " like me just need to have an authority from him to the PBS saying what condition we have, and why we need the drug, and it's generally approved. I have a permanent authority, so if the med works, it will be provided to me by the hospital for the low cost, for as long as I need it. Yay! And in a few days' time I can start to drop my Pred again, down by 10mg steps / week to 15 mg ... he wants me to stop at that level, though. My vision is still a bit worse than it has been for a while ... Fingers crossed for a good outcome this time around! xxoo > Yeah, that is so awesome, your doctor probably thought you already knew how the system worked, sometimes they just get in a hurry too, but all is well now. let us know when you start it. > > Marla > > " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb > > > > > > > Thanks! I'm still floating around, I'm so relieved!! I just rather wish my immunologist had though to explain the process a bit more clearly so I wasn't so panicked and depressed ALL frikkin' week! > > Now we just have to see how I go on the new med, and whether my poor old liver can cope with it .... but at least I can just focus on the medical stuff, and not be worrying about the money. > > xo > > > > > , that's great news! We'll cross our fingers AND pray that it works for you. > > > > Ramblin' Rose > > Co-owner/Moderator > > > > " I child-proofed my home and they STILL get in! " (Bumper sticker) > > > > > > > > > > > To: Neurosarcoidosis > > > From: denise@... > > > Date: Sat, 23 Apr 2011 10:14:13 +1000 > > > Subject: CellCept > > > > > > GUESS WHAT?!!! My immunologist just called (yes, on Easter Saturday) to tell me that the hospital has approved my CellCept prescription, and this means that THE HOSPITAL WILL PAY FOR IT!!!! It won't cost me a penny!!!! I still can't quite believe it!!!!!!! > > > > > > So I just have to get the medication from the hospital pharmacy each month, but it's completely covered. My god, I'm so relieved ... I've been panicking and sick with worry about it all week. > > > > > > I kind of wish he'd explained better last Monday about what " getting approval " meant - he never mentioned that that process would mean the hospital would cover the costs, he just said " It's very expensive " , which implied that it would be expensive to *me*. I pick up the script and first batch on Wednesday, and then can start to taper off the Prednisolone again. My Eye Clinic results from last week showed some deterioration in my peripheral vision, but not a huge amount. > > > > > > Anyway! Best Easter Present Ever! > > > > > > Now I just have to hope that it WORKS, but that's another matter ... very very VERY relieved. > > > > > > xxoo > > > > > > ------------------------------------ > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > The Neurosarcoidosis Community > > > > > > > > > > > > Message Archives:- > > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > > > Members Database:- > > > Listings of locations, phone numbers, and instant messengers. > > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2011 Report Share Posted April 27, 2011 I hope the side effects will be few. is on Cellcept @ 750mg twice a day and when she first went on it she has severe nausea. It got so bad that the doctor had to cut the dose down and then we worked up to the final dose. She is still on 20mg of pred a day. Just can't seem to get rid of that stuff. We too had to fight to get the insurance here in the States to cover the prescription as it is used quite regularly as an organ transplant med. Take care. Matt> > > , that's great news! We'll cross our fingers AND pray that it works for you.> >> > Ramblin' Rose> > Co-owner/Moderator> >> > "I child-proofed my home and they STILL get in!" (Bumper sticker)> >> >> >> >> > > To: Neurosarcoidosis > > > > > Date: Sat, 23 Apr 2011 10:14:13 +1000> > > Subject: CellCept> > >> > > GUESS WHAT?!!! My immunologist just called (yes, on Easter Saturday) to tell me that the hospital has approved my CellCept prescription, and this means that THE HOSPITAL WILL PAY FOR IT!!!! It won't cost me a penny!!!! I still can't quite believe it!!!!!!!> > >> > > So I just have to get the medication from the hospital pharmacy each month, but it's completely covered. My god, I'm so relieved ... I've been panicking and sick with worry about it all week.> > >> > > I kind of wish he'd explained better last Monday about what "getting approval" meant - he never mentioned that that process would mean the hospital would cover the costs, he just said "It's very expensive", which implied that it would be expensive to *me*. I pick up the script and first batch on Wednesday, and then can start to taper off the Prednisolone again. My Eye Clinic results from last week showed some deterioration in my peripheral vision, but not a huge amount.> > >> > > Anyway! Best Easter Present Ever!> > >> > > Now I just have to hope that it WORKS, but that's another matter ... very very VERY relieved.> > >> > > xxoo > > >> > > ------------------------------------> > >> > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > > The Neurosarcoidosis Community> > >> > >> > >> > > Message Archives:-> > > http://groups.yahoo.com/group/Neurosarcoidosis/messages> > >> > > Members Database:-> > > Listings of locations, phone numbers, and instant messengers.> > > http://groups.yahoo.com/group/Neurosarcoidosis/database> > >> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2011 Report Share Posted April 27, 2011 Thanks Matt ... no side effects yet (have had 2 doses), fingers crossed this trend continues! I'm sorry had such a rough time of it, severe nausea is no picnic. I gradually developed quite bad nausea with the Imuran after some weeks, but now I think it was from the liver damage, not a reaction to the Imuran itself. The Pred is a bugger, isn't it? No getting away from the stuff :/ I saw my favourite doctor today (my sports physician, who is *wonderful*) and actually cried about my weight gain ... he gave me a hug, that's the kind of lovely guy he is. He said that Pred can make the stomach acidic, which makes you feel more hungry (I've been having *major* problems with cravings and excessive hunger this week, beyond anything I can control with will power). He's suggested I start taking Zantac / Rani2 (Ranitidine) to reduce the acidity, and see if that helps with easing the hunger. Will let you know if it helps or not ... xo > I hope the side effects will be few. is on Cellcept @ 750mg twice a day and when she first went on it she has severe nausea. It got so bad that the doctor had to cut the dose down and then we worked up to the final dose. She is still on 20mg of pred a day. Just can't seem to get rid of that stuff. We too had to fight to get the insurance here in the States to cover the prescription as it is used quite regularly as an organ transplant med. Take care. > > Matt > > > > > > > , that's great news! We'll cross our fingers AND pray that it works for you. > > > > > > Ramblin' Rose > > > Co-owner/Moderator > > > > > > " I child-proofed my home and they STILL get in! " (Bumper sticker) > > > > > > > > > > > > > > > > To: Neurosarcoidosis > > > > From: denise@... > > > > Date: Sat, 23 Apr 2011 10:14:13 +1000 > > > > Subject: CellCept > > > > > > > > GUESS WHAT?!!! My immunologist just called (yes, on Easter Saturday) to tell me that the hospital has approved my CellCept prescription, and this means that THE HOSPITAL WILL PAY FOR IT!!!! It won't cost me a penny!!!! I still can't quite believe it!!!!!!! > > > > > > > > So I just have to get the medication from the hospital pharmacy each month, but it's completely covered. My god, I'm so relieved ... I've been panicking and sick with worry about it all week. > > > > > > > > I kind of wish he'd explained better last Monday about what " getting approval " meant - he never mentioned that that process would mean the hospital would cover the costs, he just said " It's very expensive " , which implied that it would be expensive to *me*. I pick up the script and first batch on Wednesday, and then can start to taper off the Prednisolone again. My Eye Clinic results from last week showed some deterioration in my peripheral vision, but not a huge amount. > > > > > > > > Anyway! Best Easter Present Ever! > > > > > > > > Now I just have to hope that it WORKS, but that's another matter ... very very VERY relieved. > > > > > > > > xxoo > > > > > > > > ------------------------------------ > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > > The Neurosarcoidosis Community > > > > > > > > > > > > > > > > Message Archives:- > > > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > > > > > Members Database:- > > > > Listings of locations, phone numbers, and instant messengers. > > > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2011 Report Share Posted April 28, 2011 There are many drugs that are used "off-label," which just means that they are not prescribed for an FDA-approved purpose. Doctors can prescribe a drug for any purpose, but often insurance will deny coverage for off-label use. Remicade was not approved for sarc when many docs, including the top sarc docs in the world, began using it. With the results of the multi-center ACCESS drug trial several years ago, and the increasing use by many doctors in many countries, insurance companies aren't putting up as much fight. As far as I know, it's still not FDA-approved; does anyone know for sure? Ramblin' RoseCo-owner/Moderator "I child-proofed my home and they STILL get in!" (Bumper sticker) To: Neurosarcoidosis From: dmatt1960@...Date: Wed, 27 Apr 2011 19:32:23 -0700Subject: Re: CellCept I hope the side effects will be few. is on Cellcept @ 750mg twice a day and when she first went on it she has severe nausea. It got so bad that the doctor had to cut the dose down and then we worked up to the final dose. She is still on 20mg of pred a day. Just can't seem to get rid of that stuff. We too had to fight to get the insurance here in the States to cover the prescription as it is used quite regularly as an organ transplant med. Take care. Matt> > > , that's great news! We'll cross our fingers AND pray that it works for you.> >> > Ramblin' Rose> > Co-owner/Moderator> >> > "I child-proofed my home and they STILL get in!" (Bumper sticker)> >> >> >> >> > > To: Neurosarcoidosis > > > > > Date: Sat, 23 Apr 2011 10:14:13 +1000> > > Subject: CellCept> > >> > > GUESS WHAT?!!! My immunologist just called (yes, on Easter Saturday) to tell me that the hospital has approved my CellCept prescription, and this means that THE HOSPITAL WILL PAY FOR IT!!!! It won't cost me a penny!!!! I still can't quite believe it!!!!!!!> > >> > > So I just have to get the medication from the hospital pharmacy each month, but it's completely covered. My god, I'm so relieved ... I've been panicking and sick with worry about it all week.> > >> > > I kind of wish he'd explained better last Monday about what "getting approval" meant - he never mentioned that that process would mean the hospital would cover the costs, he just said "It's very expensive", which implied that it would be expensive to *me*. I pick up the script and first batch on Wednesday, and then can start to taper off the Prednisolone again. My Eye Clinic results from last week showed some deterioration in my peripheral vision, but not a huge amount.> > >> > > Anyway! Best Easter Present Ever!> > >> > > Now I just have to hope that it WORKS, but that's another matter ... very very VERY relieved.> > >> > > xxoo > > >> > > ------------------------------------> > >> > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > > The Neurosarcoidosis Community> > >> > >> > >> > > Message Archives:-> > > http://groups.yahoo.com/group/Neurosarcoidosis/messages> > >> > > Members Database:-> > > Listings of locations, phone numbers, and instant messengers.> > > http://groups.yahoo.com/group/Neurosarcoidosis/database> > >> > > Quote Link to comment Share on other sites More sharing options...
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