Guest guest Posted October 9, 2007 Report Share Posted October 9, 2007 At night my boyfriend is having this burning pain in his arms. It's keeping him up all night. He was doing just fine until " Evercare " took his Cellcept medication away.They say that under F.D.A. Neurosarcoidosis is not a common enough thing too treat so,that means no cellcept him.We talked to Roche,the makers of Cellcept and they have a program where he was approved.We're waiting on the paper work to get to them. Cellcept working for him. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2007 Report Share Posted October 9, 2007 At night my boyfriend is having this burning pain in his arms. It's keeping him up all night. He was doing just fine until " Evercare " took his Cellcept medication away.They say that under F.D.A. Neurosarcoidosis is not a common enough thing too treat so,that means no cellcept him.We talked to Roche,the makers of Cellcept and they have a program where he was approved.We're waiting on the paper work to get to them. Cellcept working for him. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2007 Report Share Posted October 9, 2007 Burning pain is probably neuropathic. Does he have problems tolerating touch, air on his skin, etc? If so, it's probably small fiber neuropathy. If it is neuropathic pain, something like Lyrica, Neurontin, etc. might help. Have his docs tried anything like that? It would give immediate relief for nerve pain. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis From: ebonywreh@...Date: Tue, 9 Oct 2007 20:24:46 +0000Subject: Arm pain At night my boyfriend is having this burning pain in his arms. It'skeeping him up all night. He was doing just fine until "Evercare" took his Cellcept medication away.They say that under F.D.A. Neurosarcoidosis is not a common enough thing too treat so,that means no cellcept him.We talked to Roche,the makers of Cellcept and they have a program where he was approved.We're waiting on the paper work to get to them. Cellcept working for him. Help yourself to FREE treats served up daily at the Messenger Café. Stop by today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2007 Report Share Posted October 9, 2007 Burning pain is probably neuropathic. Does he have problems tolerating touch, air on his skin, etc? If so, it's probably small fiber neuropathy. If it is neuropathic pain, something like Lyrica, Neurontin, etc. might help. Have his docs tried anything like that? It would give immediate relief for nerve pain. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis From: ebonywreh@...Date: Tue, 9 Oct 2007 20:24:46 +0000Subject: Arm pain At night my boyfriend is having this burning pain in his arms. It'skeeping him up all night. He was doing just fine until "Evercare" took his Cellcept medication away.They say that under F.D.A. Neurosarcoidosis is not a common enough thing too treat so,that means no cellcept him.We talked to Roche,the makers of Cellcept and they have a program where he was approved.We're waiting on the paper work to get to them. Cellcept working for him. Help yourself to FREE treats served up daily at the Messenger Café. Stop by today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2007 Report Share Posted October 9, 2007 It could be avascular necrosis, AVN. Was he ever on prednisone for any extended period? If so, this might be worth checking out. A simple X-ray will reveal and damage to the joints of the humeral (shoulder) heads or femoral (thigh) heads. This can be very painful, especially when trying to sleep in bed. I know because I have this condition on both sides of my shoulder as a result of taking prednisone for a long time. I hope this is not the case. > > > Burning pain is probably neuropathic. Does he have problems tolerating touch, air on his skin, etc? If so, it's probably small fiber neuropathy. If it is neuropathic pain, something like Lyrica, Neurontin, etc. might help. Have his docs tried anything like that? It would give immediate relief for nerve pain. > Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 > " How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these. " > > ~ Washington Carver > > > To: Neurosarcoidosis@...: ebonywreh@...: Tue, 9 Oct 2007 20:24:46 +0000Subject: Arm pain > > > > > At night my boyfriend is having this burning pain in his arms. It'skeeping him up all night. He was doing just fine until " Evercare " took his Cellcept medication away.They say that under F.D.A. Neurosarcoidosis is not a common enough thing too treat so,that means no cellcept him.We talked to Roche,the makers of Cellcept and they have a program where he was approved.We're waiting on the paper work to get to them. Cellcept working for him. > > > > > > > _________________________________________________________________ > Help yourself to FREE treats served up daily at the Messenger Café. Stop by today. > http://www.cafemessenger.com/info/info_sweetstuff2.html? ocid=TXT_TAGLM_OctWLtagline > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2007 Report Share Posted October 9, 2007 It could be avascular necrosis, AVN. Was he ever on prednisone for any extended period? If so, this might be worth checking out. A simple X-ray will reveal and damage to the joints of the humeral (shoulder) heads or femoral (thigh) heads. This can be very painful, especially when trying to sleep in bed. I know because I have this condition on both sides of my shoulder as a result of taking prednisone for a long time. I hope this is not the case. > > > Burning pain is probably neuropathic. Does he have problems tolerating touch, air on his skin, etc? If so, it's probably small fiber neuropathy. If it is neuropathic pain, something like Lyrica, Neurontin, etc. might help. Have his docs tried anything like that? It would give immediate relief for nerve pain. > Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 > " How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these. " > > ~ Washington Carver > > > To: Neurosarcoidosis@...: ebonywreh@...: Tue, 9 Oct 2007 20:24:46 +0000Subject: Arm pain > > > > > At night my boyfriend is having this burning pain in his arms. It'skeeping him up all night. He was doing just fine until " Evercare " took his Cellcept medication away.They say that under F.D.A. Neurosarcoidosis is not a common enough thing too treat so,that means no cellcept him.We talked to Roche,the makers of Cellcept and they have a program where he was approved.We're waiting on the paper work to get to them. Cellcept working for him. > > > > > > > _________________________________________________________________ > Help yourself to FREE treats served up daily at the Messenger Café. Stop by today. > http://www.cafemessenger.com/info/info_sweetstuff2.html? ocid=TXT_TAGLM_OctWLtagline > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2007 Report Share Posted October 10, 2007 Did an administrator write this for me? I don't remember posting this. If so, that's fine. I just want to make sure that I am not going crazy. Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2007 Report Share Posted October 10, 2007 Did an administrator write this for me? I don't remember posting this. If so, that's fine. I just want to make sure that I am not going crazy. Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2007 Report Share Posted October 10, 2007 Ebony, I'm not sure what you are referring to. You wrote the original message about your fiance's burning pain in his arms. A couple of people have responded to it, and sometimes it looks like the response came from the original sender, so maybe that's what you are referring to. If you still aren't sure, go to the Message Archives (found at the bottom of this & every other group email). The messages are sorted according to date, unless you have changed the setting. Your first message with the 3 questions & all the subsequent messages should be on the first page of messages, if it's set to show the most recent posts first. Let me know if you still have questions. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: ebonywreh@...Date: Wed, 10 Oct 2007 05:54:14 -0700Subject: Re:Arm pain Did an administrator write this for me? I don't remember posting this. If so, that's fine. I just want to make sure that I am not going crazy. Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online. Peek-a-boo FREE Tricks Treats for You! Get 'em! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2007 Report Share Posted October 10, 2007 Ebony, I'm not sure what you are referring to. You wrote the original message about your fiance's burning pain in his arms. A couple of people have responded to it, and sometimes it looks like the response came from the original sender, so maybe that's what you are referring to. If you still aren't sure, go to the Message Archives (found at the bottom of this & every other group email). The messages are sorted according to date, unless you have changed the setting. Your first message with the 3 questions & all the subsequent messages should be on the first page of messages, if it's set to show the most recent posts first. Let me know if you still have questions. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: ebonywreh@...Date: Wed, 10 Oct 2007 05:54:14 -0700Subject: Re:Arm pain Did an administrator write this for me? I don't remember posting this. If so, that's fine. I just want to make sure that I am not going crazy. Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online. Peek-a-boo FREE Tricks Treats for You! Get 'em! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2007 Report Share Posted October 10, 2007 This is a little off track, but speaking of Neurontin.........I have been on it for over a year now and have put on a lot of weight. I was wondering if that is a side effect of Neurontin and if anyone else has had the same issue. Of course I am on a lot of other meds but it seems since I have been on this one, Neurontin , the pounds have packed on. I've had to go out and buy new clothes cause nothing fits and it depresses me. Anyone have this problem with Neurontin? Debbie TRose wrote: Burning pain is probably neuropathic. Does he have problems tolerating touch, air on his skin, etc? If so, it's probably small fiber neuropathy. If it is neuropathic pain, something like Lyrica, Neurontin, etc. might help. Have his docs tried anything like that? It would give immediate relief for nerve pain. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis From: ebonywreh@...Date: Tue, 9 Oct 2007 20:24:46 +0000Subject: Arm pain At night my boyfriend is having this burning pain in his arms. It'skeeping him up all night. He was doing just fine until "Evercare" took his Cellcept medication away.They say that under F.D.A. Neurosarcoidosis is not a common enough thing too treat so,that means no cellcept him.We talked to Roche,the makers of Cellcept and they have a program where he was approved.We're waiting on the paper work to get to them. Cellcept working for him. Help yourself to FREE treats served up daily at the Messenger Café. Stop by today! Take the Internet to Go: Yahoo!Go puts the Internet in your pocket: mail, news, photos more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2007 Report Share Posted October 10, 2007 This is a little off track, but speaking of Neurontin.........I have been on it for over a year now and have put on a lot of weight. I was wondering if that is a side effect of Neurontin and if anyone else has had the same issue. Of course I am on a lot of other meds but it seems since I have been on this one, Neurontin , the pounds have packed on. I've had to go out and buy new clothes cause nothing fits and it depresses me. Anyone have this problem with Neurontin? Debbie TRose wrote: Burning pain is probably neuropathic. Does he have problems tolerating touch, air on his skin, etc? If so, it's probably small fiber neuropathy. If it is neuropathic pain, something like Lyrica, Neurontin, etc. might help. Have his docs tried anything like that? It would give immediate relief for nerve pain. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis From: ebonywreh@...Date: Tue, 9 Oct 2007 20:24:46 +0000Subject: Arm pain At night my boyfriend is having this burning pain in his arms. It'skeeping him up all night. He was doing just fine until "Evercare" took his Cellcept medication away.They say that under F.D.A. Neurosarcoidosis is not a common enough thing too treat so,that means no cellcept him.We talked to Roche,the makers of Cellcept and they have a program where he was approved.We're waiting on the paper work to get to them. Cellcept working for him. Help yourself to FREE treats served up daily at the Messenger Café. Stop by today! Take the Internet to Go: Yahoo!Go puts the Internet in your pocket: mail, news, photos more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2007 Report Share Posted October 10, 2007 Sorry for the previous post asking who posted the question. It was my fiance who has NS. He did it without telling me for some reason. He said he just needed to vent. I have encouraged him to post more on the site so please look out for his future posts. I really think that it can help him get things out that he can't say to me. I will make sure that he says it in first person next time though. Also, we talked to Robbie and we will be able to attend the conference. We look forward to meeting everyone then. Need a vacation? Get great deals to amazing places on Yahoo! Travel. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2007 Report Share Posted October 10, 2007 Sorry for the previous post asking who posted the question. It was my fiance who has NS. He did it without telling me for some reason. He said he just needed to vent. I have encouraged him to post more on the site so please look out for his future posts. I really think that it can help him get things out that he can't say to me. I will make sure that he says it in first person next time though. Also, we talked to Robbie and we will be able to attend the conference. We look forward to meeting everyone then. Need a vacation? Get great deals to amazing places on Yahoo! Travel. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2007 Report Share Posted October 11, 2007 Ebony, that's pretty neat that your fiance posted, even if it was "anonymous." Hopefully, that will help him get comfortable sharing with us, or asking questions. I'm looking forward to meeting y'all. I'm tall with short gray hair. Friday night I'll be wearing a shirt with K.I.S.S. (not the band; it stands for Kick In to Stop Sarcoidosis) on the front & Hike for Lung Health on the back. I'm trying to remember who on the list is going--I know that Judy & her husband, and Sharon & her husband are. Sometimes members who don't post very often have been there. We've had people from as far as Texas & New York, because there aren't many similar events. This conference is for anyone with sarcoidosis, not just NS, but most of the topics are pertinent to all. See you two on Friday! Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis From: ebonywreh@...Date: Wed, 10 Oct 2007 18:00:06 -0700Subject: Re:Arm pain Sorry for the previous post asking who posted the question. It was my fiance who has NS. He did it without telling me for some reason. He said he just needed to vent. I have encouraged him to post more on the site so please look out for his future posts. I really think that it can help him get things out that he can't say to me. I will make sure that he says it in first person next time though. Also, we talked to Robbie and we will be able to attend the conference. We look forward to meeting everyone then. Need a vacation? Get great deals to amazing places on Yahoo! Travel. Windows Live Hotmail and Microsoft Office Outlook – together at last. Get it now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2007 Report Share Posted October 11, 2007 Ebony, that's pretty neat that your fiance posted, even if it was "anonymous." Hopefully, that will help him get comfortable sharing with us, or asking questions. I'm looking forward to meeting y'all. I'm tall with short gray hair. Friday night I'll be wearing a shirt with K.I.S.S. (not the band; it stands for Kick In to Stop Sarcoidosis) on the front & Hike for Lung Health on the back. I'm trying to remember who on the list is going--I know that Judy & her husband, and Sharon & her husband are. Sometimes members who don't post very often have been there. We've had people from as far as Texas & New York, because there aren't many similar events. This conference is for anyone with sarcoidosis, not just NS, but most of the topics are pertinent to all. See you two on Friday! Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis From: ebonywreh@...Date: Wed, 10 Oct 2007 18:00:06 -0700Subject: Re:Arm pain Sorry for the previous post asking who posted the question. It was my fiance who has NS. He did it without telling me for some reason. He said he just needed to vent. I have encouraged him to post more on the site so please look out for his future posts. I really think that it can help him get things out that he can't say to me. I will make sure that he says it in first person next time though. Also, we talked to Robbie and we will be able to attend the conference. We look forward to meeting everyone then. Need a vacation? Get great deals to amazing places on Yahoo! Travel. Windows Live Hotmail and Microsoft Office Outlook – together at last. Get it now! Quote Link to comment Share on other sites More sharing options...
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