Guest guest Posted July 24, 2003 Report Share Posted July 24, 2003 Rose, My pulmo who seems to be knowledgable of sarc put me on Trental last winter when i was complaining of all the pain i was having and he said there was a study going on about Trental being used to help people with sarc so he asked if i wanted to try it. So i said sure. I took it for several months i knew it was for people with like bad circulation and so forth but any ways after about 6 months i quit taking it i didn't see any difference. However maybe i should have stayed on it cause they are telling me that the problems with my legs the skin part that is and all the chronic edema is from poor circulation due to the chronic edema. I don't know? That's just my 2 cents worth. Love ya sweetie, Rejoice in the Lord always, Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2003 Report Share Posted July 24, 2003 Thanks, Jan. Heck, who knows what works or doesn't. Here's a little story on stress, misery & a little fun. Yesterday, my legs were hurting so bad that I couldn't sit still. It was my day off, but I was supposed to go in for a meeting. I had slept very little the night before due to my leg pain, went in & saw that someone had piled a bunch of papers & stuff on my desk. I just started bawling, cried through about half the meeting, squirming around the entire time, even with my legs elevated. Finally I just got up and went into a call room to lie down. After awhile, I felt like I could stand the drive home (less than 10 minutes.) One of the other midwives had invited us all to her house for supper, but I wasn't going to go, because it's a 40 min. drive & I just couldn't stand the thought. Sweet Sam, my granddaughter, suggested maybe someone would give me a ride. She's so smart! So one of the other midwives took me, and I just stretched out on her backseat & was able to tolerate the trip. Meanwhile. . . .I had called Larry the Neuro's office twice and he called me on my cell phone while I was on the way. I didn't recognize the phone number when I answered, "Hello." He said, "Hello." I said, "HELL-OOO?" Then he said, "It's your doctor!" I knew it was him, but I said, "Which doctor? I have lots of them." After a long pause, I asked, "Oh, is this Dr. Blankenship?" He started telling me about a chapter or textbook or something that Stern had written, then asked me what I thought was going on with my legs. I said that I was hoping he could tell me. Then the connection broke off. I waited a few minutes & he didn't call back, so I called him (on his cell phone), and when he answered, I said "Hello." He said, "Hello?" I said, "It's your PATIENT! You only have one, don't you?!?" He cracked up. Anyway, what he suggested I do for the immediate desperate situation was to take 2 doses of Klonapin at bedtime, and if I wasn't asleep in 2 hours, take 1 more. When I got home, I took the 2 doses of Klonapin, plus 10mg of Ambien, and another dose of Klonapin 1-1/2 hours later. I ended up with about 6 hours of sleep, which helped some. The best part is that now I have his cell phone number! I still don't know why this leg pain has kicked up so many notches in the last few days. Well, still have a bunch of messages to get through, so will let you go. Any of you who got this far must really be insomniacs. Ramblin' Rose Re: Trental Rose,My pulmo who seems to be knowledgable of sarc put me on Trental last winter when i was complaining of all the pain i was having and he said there was a study going on about Trental being used to help people with sarc so he asked if i wanted to try it. So i said sure. I took it for several months i knew it was for people with like bad circulation and so forth but any ways after about 6 months i quit taking it i didn't see any difference.However maybe i should have stayed on it cause they are telling me that the problems with my legs the skin part that is and all the chronic edema is from poor circulation due to the chronic edema.I don't know? That's just my 2 cents worth.Love ya sweetie,Rejoice in the Lord always,Jan~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives and Digest Attachment Pictures:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:-Add a website URL you have found useful.http://groups.yahoo.com/group/Neurosarcoidosis/linksPersonal Complaints or problems:-Please email the moderatorsmailto:Neurosarcoidosis-owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/joinTo subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you!~~~~ *** ~~~ *** ~~~ *** ~~~~Come stand by my side where I am going,Take my hand if I should stumble and fall,It's the strength and love that you share,That gives me what I need most of all.- Hoyt Axton~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2003 Report Share Posted July 24, 2003 Rose, So sorry you are still having trouble with you legs if its how mine were a few months ago it should pass soon, i hope for you anyway. Tomorrow is my big day ant the neuro surgeon i had a MRI with contrast this week because of my facial pain on one side and because of the herniated disc at the c-5 level. My neuro referred me to see if i still need surgery or just what this surgeons opinion will be. So i'm really nervous to find out what the findings are tomorrow. Love ya, Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2003 Report Share Posted July 28, 2003 Hey, my pretty Rosita! As you know, I'm on Remicade, which is also one of those tumor necrosis factor drugs. My leg pain, both muscular and bone has not changed. However, I feel really healthy, and ir's been years since I've felt health without psychosis. Hope you can get help soon. I will say that the more I exercise in the pool the less my legs hurt. Love ya kid, Rose wrote: Does anyone know about a drug called Trental? Dr. Stern mentioned it as a possibility both times that I saw him. I know it's in the category of anti-tumor necrosing factor, or something like that, but I don't know what it's supposed to actually do. My big thing right now is my legs hurting. It's hard for me to concentrate on anything else, reading, tv, even email, because they hurt constantly. Then when I stand up, the cramping starts. It's gotten worse in the last couple of weeks. I wonder if the Trental would help that. I keep meaning to call my neuro & ask, but if I'm working, the day goes by too fast, and if I'm off, I spend most of it curled up trying to sleep. Thanks for any info. Rose ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community Live Group Chat:- Mondays & Fridays 10pm EST USA http://www.elderwyn.com/neurosarcoidosis/chat.php Message Archives and Digest Attachment Pictures:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:- Add a website URL you have found useful. http://groups.yahoo.com/group/Neurosarcoidosis/links Personal Complaints or problems:- Please email the moderators mailto:Neurosarcoidosis-owner Subscription Details:- 1) Individual email - means that every email sent to the list you receive. 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. 3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email. To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/join To subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you! ~~~~ *** ~~~ *** ~~~ *** ~~~~ Come stand by my side where I am going, Take my hand if I should stumble and fall, It's the strength and love that you share, That gives me what I need most of all. - Hoyt Axton ~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2003 Report Share Posted October 2, 2003 Rose, I am starting it tomorrow..........so we shall see tomorrow..I am starting at 400 3 a day Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2003 Report Share Posted October 2, 2003 Stase, I just started Trental last week. Dr. Stern had suggested it both times I saw him, but my local neuro either ignored or overlooked it. So last week, I asked if there was a reason I couldn't try it. He didn't have one, but asked me how that was supposed to help NS. I had the answer (she smirked), that it was the anti-tumor necrosis factor. I have no idea what that means, but he seemed impressed & wrote the script. The info with it says it takes 2-3 weeks to see an effect on intermittent claudication (pain in legs with walking), which is the usual use, so I'm assuming I need to wait a few weeks to see if it helps my fatigue. Rose Trental Has anyone ever been on this drug?.....if so, how have you been on it? thanks, stase~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives and Digest Attachment Pictures:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:-Add a website URL you have found useful.http://groups.yahoo.com/group/Neurosarcoidosis/linksPersonal Complaints or problems:-Please email the moderatorsmailto:Neurosarcoidosis-owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/joinTo subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you!~~~~ *** ~~~ *** ~~~ *** ~~~~Come stand by my side where I am going,Take my hand if I should stumble and fall,It's the strength and love that you share,That gives me what I need most of all.- Hoyt Axton~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2003 Report Share Posted October 2, 2003 Hi, I have been on trental for about 2 years now. Dr Stern presrcibed it and he believes that it does effect the tumour necrosis factor. Doesnt seem to have any negative side effects either. Anyway that what i know about trental Ann Trental Has anyone ever been on this drug?.....if so, how have you been on it? thanks, stase~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives and Digest Attachment Pictures:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:-Add a website URL you have found useful.http://groups.yahoo.com/group/Neurosarcoidosis/linksPersonal Complaints or problems:-Please email the moderatorsmailto:Neurosarcoidosis-owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/joinTo subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you!~~~~ *** ~~~ *** ~~~ *** ~~~~Come stand by my side where I am going,Take my hand if I should stumble and fall,It's the strength and love that you share,That gives me what I need most of all.- Hoyt Axton~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2003 Report Share Posted October 2, 2003 I was on it for about 3 months and to tell ya i couldn't tell any difference with anything. So I quit taking it. Sorry, wish i could have helped, Jan ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.521 / Virus Database: 319 - Release Date: 9/23/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2003 Report Share Posted October 3, 2003 Ann, can you tell any difference yourself, in symptoms? Rose Trental Has anyone ever been on this drug?.....if so, how have you been on it? thanks, stase~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives and Digest Attachment Pictures:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:-Add a website URL you have found useful.http://groups.yahoo.com/group/Neurosarcoidosis/linksPersonal Complaints or problems:-Please email the moderatorsmailto:Neurosarcoidosis-owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/joinTo subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you!~~~~ *** ~~~ *** ~~~ *** ~~~~Come stand by my side where I am going,Take my hand if I should stumble and fall,It's the strength and love that you share,That gives me what I need most of all.- Hoyt Axton~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2003 Report Share Posted October 4, 2003 Rose, All I know is I havent grown another brain tumour. I don't know if thats because of the imuran or the trental or a combination of both. Dr Stern seems pretty convinced that it does help so I don;t want to test fate. I have already had 2 craniotomies and I will never have another. Ann Trental Has anyone ever been on this drug?.....if so, how have you been on it? thanks, stase~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives and Digest Attachment Pictures:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:-Add a website URL you have found useful.http://groups.yahoo.com/group/Neurosarcoidosis/linksPersonal Complaints or problems:-Please email the moderatorsmailto:Neurosarcoidosis-owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/joinTo subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you!~~~~ *** ~~~ *** ~~~ *** ~~~~Come stand by my side where I am going,Take my hand if I should stumble and fall,It's the strength and love that you share,That gives me what I need most of all.- Hoyt Axton~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2003 Report Share Posted October 6, 2003 yes Aish..it is an anti- tnf agent....my issue with the drug is the fact of my possible MS. The usual anti-tnf's I am not allowed to take (enbrel)....they say this one is ok to take...I am seeing Mr. rude neuro on Wed.....so I will ask then..... Thanks, Stase Quote Link to comment Share on other sites More sharing options...
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