Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 Yes Diane, the Methotrexate did help the neuro pain but I was on it for a few months before I noticed any improvement, like 2-3 months if I remember right? I would have the same problem wake up with my left side, arm, leg and sometimes the whole left side would be numb and I would need someone to help me get out of bed, that eventually got better, now I only get that way when I over due it, like way over due it! But this all sound so similar, so just hang in there, did you say you are also on Remicade? If so that should be helping you out too. You need to be on an immunosuppressant when on Remicade, so that might be why you are on the Methotrexate too, so your body doesn’t produce antibodies against the Remicade. Hope this all helps and here’s hoping you have a better day. Smiles, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Diane Aja Sent: Sunday, July 16, 2006 8:54 PM To: Neurosarcoidosis Subject: Marla - Methotrexate Hi Marla and anyone else, I just started the MTX two weeks ago and am on 12.5 mgs. also. They said after one month if everything was going well, I would be going up on the dosage. I think she said 15 mgs. just like you were on. I'm not sleeping well at all lately. Last night my left arm was so numb I had to get up and hit it a bunch of times before I could get it to wake up. I really don't know what the MTX is suppose to do without the Remicade, but so far I can't say I feel anything but worse lately. The sarc in my spine is causing such pain in my back and I am now really feeling arthritis like pain in the hands, hips and legs especially at night. Will the MTX eventually help this? Just wondering. Smiles back at ya, Diane in Texas Re: Severe Upper Abdomen Pain Attacks Attacks (Not Gallbladder) Dear Diane, I too experiece the pain you are discribing for several months. Mine was finially found to be from my colon. I took Levbid for several months and the pain went away almost immediately after I started the meds. I had to stop the Levbid when I developed glaucoma and I was afraid the pain would come back, but it hasn't. I have been on Methotrexate for going on seven years and have had no problems with bleeding. I do mine by injection so I have no stomach upset with taking it. I inject myself one a week. I am on a higher dose now and the ony side effect is some hair lose. Be sure you are taking Folic Acid with the Methotrexate! It is very important. I have been on Remicade for two month (I have had 3 treatments). My insurance denied it for me so I went to the drug company itself and it is giving it to me free for 6 months. I hope you get some relief from your pain and that you have no problem getting the remicade ok'd TTFN Ruth > > Have or do any of you experience pain attacks right under your breastbone area and through your midsection? This is crushing, binding pain that takes away my breath and puts me in the fetal position. It comes on steadily for about 30 minutes and lasts heavily about 10. My poor husband gets the death grip on his hand if he's around. I squeeze his hand so hard. The pain is just unbearable. First off, it is NOT my gallbladder as this was taken out in 11/05. I have sarc all through my spine and my docs all think it is the nerves being pinched in my spine. I also have herniated discs and bone spurs from a long time ago. These attacks seem to be brought on by any kind of exertion, which for me anymore is just walking a couple hours or working around the house. It also seems to be brought on my extreme heat. The pain from these attacks are SO severe it's worse than anything I've ever experienced in my life including having twins naturally. I have a high tolerance for pain, but cannot handle these attacks very well. > > I have had CT scans, MRI's and Ultrasounds of the area and the only thing they see is that my spleen is enlarged and it and the liver are heavily involved with sarc (already knew all that). They just started me on Methotrexate (12.5 mgs.) last week. Tomorrow is my second dose. They are in the process of trying to get approval of Remicade from my insurance company. I've already had two attacks since going on the Meth :-( I hope that no one else is experiencing this horrible pain, but it sure would be nice to know if the docs are correct in thinking it is nerve pain from my spine sarc. Any light on this subject would greatly be appreciated. > > One more question - Just since I started the Meth this week when I brush my teeth I am spitting lots of blood the whole time. This is not the little bit you get if you don't floss your teeth good once in a while. This is blood the whole time I'm brushing. I find no sores in my mouth like the doc said I might get and nothing hurts at all. I've never experienced anything like this before. Anyone on Methotrexate get this? Should I call the doc? > > Wishing everyone cooler days than we're having! > > Thanks for any help. > Diane in Texas > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 Yes Diane, the Methotrexate did help the neuro pain but I was on it for a few months before I noticed any improvement, like 2-3 months if I remember right? I would have the same problem wake up with my left side, arm, leg and sometimes the whole left side would be numb and I would need someone to help me get out of bed, that eventually got better, now I only get that way when I over due it, like way over due it! But this all sound so similar, so just hang in there, did you say you are also on Remicade? If so that should be helping you out too. You need to be on an immunosuppressant when on Remicade, so that might be why you are on the Methotrexate too, so your body doesn’t produce antibodies against the Remicade. Hope this all helps and here’s hoping you have a better day. Smiles, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Diane Aja Sent: Sunday, July 16, 2006 8:54 PM To: Neurosarcoidosis Subject: Marla - Methotrexate Hi Marla and anyone else, I just started the MTX two weeks ago and am on 12.5 mgs. also. They said after one month if everything was going well, I would be going up on the dosage. I think she said 15 mgs. just like you were on. I'm not sleeping well at all lately. Last night my left arm was so numb I had to get up and hit it a bunch of times before I could get it to wake up. I really don't know what the MTX is suppose to do without the Remicade, but so far I can't say I feel anything but worse lately. The sarc in my spine is causing such pain in my back and I am now really feeling arthritis like pain in the hands, hips and legs especially at night. Will the MTX eventually help this? Just wondering. Smiles back at ya, Diane in Texas Re: Severe Upper Abdomen Pain Attacks Attacks (Not Gallbladder) Dear Diane, I too experiece the pain you are discribing for several months. Mine was finially found to be from my colon. I took Levbid for several months and the pain went away almost immediately after I started the meds. I had to stop the Levbid when I developed glaucoma and I was afraid the pain would come back, but it hasn't. I have been on Methotrexate for going on seven years and have had no problems with bleeding. I do mine by injection so I have no stomach upset with taking it. I inject myself one a week. I am on a higher dose now and the ony side effect is some hair lose. Be sure you are taking Folic Acid with the Methotrexate! It is very important. I have been on Remicade for two month (I have had 3 treatments). My insurance denied it for me so I went to the drug company itself and it is giving it to me free for 6 months. I hope you get some relief from your pain and that you have no problem getting the remicade ok'd TTFN Ruth > > Have or do any of you experience pain attacks right under your breastbone area and through your midsection? This is crushing, binding pain that takes away my breath and puts me in the fetal position. It comes on steadily for about 30 minutes and lasts heavily about 10. My poor husband gets the death grip on his hand if he's around. I squeeze his hand so hard. The pain is just unbearable. First off, it is NOT my gallbladder as this was taken out in 11/05. I have sarc all through my spine and my docs all think it is the nerves being pinched in my spine. I also have herniated discs and bone spurs from a long time ago. These attacks seem to be brought on by any kind of exertion, which for me anymore is just walking a couple hours or working around the house. It also seems to be brought on my extreme heat. The pain from these attacks are SO severe it's worse than anything I've ever experienced in my life including having twins naturally. I have a high tolerance for pain, but cannot handle these attacks very well. > > I have had CT scans, MRI's and Ultrasounds of the area and the only thing they see is that my spleen is enlarged and it and the liver are heavily involved with sarc (already knew all that). They just started me on Methotrexate (12.5 mgs.) last week. Tomorrow is my second dose. They are in the process of trying to get approval of Remicade from my insurance company. I've already had two attacks since going on the Meth :-( I hope that no one else is experiencing this horrible pain, but it sure would be nice to know if the docs are correct in thinking it is nerve pain from my spine sarc. Any light on this subject would greatly be appreciated. > > One more question - Just since I started the Meth this week when I brush my teeth I am spitting lots of blood the whole time. This is not the little bit you get if you don't floss your teeth good once in a while. This is blood the whole time I'm brushing. I find no sores in my mouth like the doc said I might get and nothing hurts at all. I've never experienced anything like this before. Anyone on Methotrexate get this? Should I call the doc? > > Wishing everyone cooler days than we're having! > > Thanks for any help. > Diane in Texas > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 Yes Diane, the Methotrexate did help the neuro pain but I was on it for a few months before I noticed any improvement, like 2-3 months if I remember right? I would have the same problem wake up with my left side, arm, leg and sometimes the whole left side would be numb and I would need someone to help me get out of bed, that eventually got better, now I only get that way when I over due it, like way over due it! But this all sound so similar, so just hang in there, did you say you are also on Remicade? If so that should be helping you out too. You need to be on an immunosuppressant when on Remicade, so that might be why you are on the Methotrexate too, so your body doesn’t produce antibodies against the Remicade. Hope this all helps and here’s hoping you have a better day. Smiles, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Diane Aja Sent: Sunday, July 16, 2006 8:54 PM To: Neurosarcoidosis Subject: Marla - Methotrexate Hi Marla and anyone else, I just started the MTX two weeks ago and am on 12.5 mgs. also. They said after one month if everything was going well, I would be going up on the dosage. I think she said 15 mgs. just like you were on. I'm not sleeping well at all lately. Last night my left arm was so numb I had to get up and hit it a bunch of times before I could get it to wake up. I really don't know what the MTX is suppose to do without the Remicade, but so far I can't say I feel anything but worse lately. The sarc in my spine is causing such pain in my back and I am now really feeling arthritis like pain in the hands, hips and legs especially at night. Will the MTX eventually help this? Just wondering. Smiles back at ya, Diane in Texas Re: Severe Upper Abdomen Pain Attacks Attacks (Not Gallbladder) Dear Diane, I too experiece the pain you are discribing for several months. Mine was finially found to be from my colon. I took Levbid for several months and the pain went away almost immediately after I started the meds. I had to stop the Levbid when I developed glaucoma and I was afraid the pain would come back, but it hasn't. I have been on Methotrexate for going on seven years and have had no problems with bleeding. I do mine by injection so I have no stomach upset with taking it. I inject myself one a week. I am on a higher dose now and the ony side effect is some hair lose. Be sure you are taking Folic Acid with the Methotrexate! It is very important. I have been on Remicade for two month (I have had 3 treatments). My insurance denied it for me so I went to the drug company itself and it is giving it to me free for 6 months. I hope you get some relief from your pain and that you have no problem getting the remicade ok'd TTFN Ruth > > Have or do any of you experience pain attacks right under your breastbone area and through your midsection? This is crushing, binding pain that takes away my breath and puts me in the fetal position. It comes on steadily for about 30 minutes and lasts heavily about 10. My poor husband gets the death grip on his hand if he's around. I squeeze his hand so hard. The pain is just unbearable. First off, it is NOT my gallbladder as this was taken out in 11/05. I have sarc all through my spine and my docs all think it is the nerves being pinched in my spine. I also have herniated discs and bone spurs from a long time ago. These attacks seem to be brought on by any kind of exertion, which for me anymore is just walking a couple hours or working around the house. It also seems to be brought on my extreme heat. The pain from these attacks are SO severe it's worse than anything I've ever experienced in my life including having twins naturally. I have a high tolerance for pain, but cannot handle these attacks very well. > > I have had CT scans, MRI's and Ultrasounds of the area and the only thing they see is that my spleen is enlarged and it and the liver are heavily involved with sarc (already knew all that). They just started me on Methotrexate (12.5 mgs.) last week. Tomorrow is my second dose. They are in the process of trying to get approval of Remicade from my insurance company. I've already had two attacks since going on the Meth :-( I hope that no one else is experiencing this horrible pain, but it sure would be nice to know if the docs are correct in thinking it is nerve pain from my spine sarc. Any light on this subject would greatly be appreciated. > > One more question - Just since I started the Meth this week when I brush my teeth I am spitting lots of blood the whole time. This is not the little bit you get if you don't floss your teeth good once in a while. This is blood the whole time I'm brushing. I find no sores in my mouth like the doc said I might get and nothing hurts at all. I've never experienced anything like this before. Anyone on Methotrexate get this? Should I call the doc? > > Wishing everyone cooler days than we're having! > > Thanks for any help. > Diane in Texas > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 I'm not on the Remicade yet. Thanks again Marla for all your info on the MTX. Diane in Texas Re: Severe Upper Abdomen Pain Attacks Attacks (Not Gallbladder) Dear Diane,I too experiece the pain you are discribing for several months. Mine was finially found to be from my colon. I took Levbid for several months and the pain went away almost immediately after I started the meds. I had to stop the Levbid when I developed glaucoma and I was afraid the pain would come back, but it hasn't. I have been on Methotrexate for going on seven years and have had no problems with bleeding. I do mine by injection so I have no stomach upset with taking it. I inject myself one a week. I am on a higher dose now and the ony side effect is some hair lose. Be sure you are taking Folic Acid with the Methotrexate! It is very important. I have been on Remicade for two month (I have had 3 treatments). My insurance denied it for me so I went to the drug company itself and it is giving it to me free for 6 months. I hope you get some relief from your pain and that you have no problem getting the remicade ok'dTTFNRuth>> Have or do any of you experience pain attacks right under your breastbone area and through your midsection? This is crushing, binding pain that takes away my breath and puts me in the fetal position. It comes on steadily for about 30 minutes and lasts heavily about 10. My poor husband gets the death grip on his hand if he's around. I squeeze his hand so hard. The pain is just unbearable. First off, it is NOT my gallbladder as this was taken out in 11/05. I have sarc all through my spine and my docs all think it is the nerves being pinched in my spine. I also have herniated discs and bone spurs from a long time ago. These attacks seem to be brought on by any kind of exertion, which for me anymore is just walking a couple hours or working around the house. It also seems to be brought on my extreme heat. The pain from these attacks are SO severe it's worse than anything I've ever experienced in my life including having twins naturally. I have a high tolerance for pain, but cannot handle these attacks very well. > > I have had CT scans, MRI's and Ultrasounds of the area and the only thing they see is that my spleen is enlarged and it and the liver are heavily involved with sarc (already knew all that). They just started me on Methotrexate (12.5 mgs.) last week. Tomorrow is my second dose. They are in the process of trying to get approval of Remicade from my insurance company. I've already had two attacks since going on the Meth :-( I hope that no one else is experiencing this horrible pain, but it sure would be nice to know if the docs are correct in thinking it is nerve pain from my spine sarc. Any light on this subject would greatly be appreciated. > > One more question - Just since I started the Meth this week when I brush my teeth I am spitting lots of blood the whole time. This is not the little bit you get if you don't floss your teeth good once in a while. This is blood the whole time I'm brushing. I find no sores in my mouth like the doc said I might get and nothing hurts at all. I've never experienced anything like this before. Anyone on Methotrexate get this? Should I call the doc? > > Wishing everyone cooler days than we're having!> > Thanks for any help.> Diane in Texas> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 I'm not on the Remicade yet. Thanks again Marla for all your info on the MTX. Diane in Texas Re: Severe Upper Abdomen Pain Attacks Attacks (Not Gallbladder) Dear Diane,I too experiece the pain you are discribing for several months. Mine was finially found to be from my colon. I took Levbid for several months and the pain went away almost immediately after I started the meds. I had to stop the Levbid when I developed glaucoma and I was afraid the pain would come back, but it hasn't. I have been on Methotrexate for going on seven years and have had no problems with bleeding. I do mine by injection so I have no stomach upset with taking it. I inject myself one a week. I am on a higher dose now and the ony side effect is some hair lose. Be sure you are taking Folic Acid with the Methotrexate! It is very important. I have been on Remicade for two month (I have had 3 treatments). My insurance denied it for me so I went to the drug company itself and it is giving it to me free for 6 months. I hope you get some relief from your pain and that you have no problem getting the remicade ok'dTTFNRuth>> Have or do any of you experience pain attacks right under your breastbone area and through your midsection? This is crushing, binding pain that takes away my breath and puts me in the fetal position. It comes on steadily for about 30 minutes and lasts heavily about 10. My poor husband gets the death grip on his hand if he's around. I squeeze his hand so hard. The pain is just unbearable. First off, it is NOT my gallbladder as this was taken out in 11/05. I have sarc all through my spine and my docs all think it is the nerves being pinched in my spine. I also have herniated discs and bone spurs from a long time ago. These attacks seem to be brought on by any kind of exertion, which for me anymore is just walking a couple hours or working around the house. It also seems to be brought on my extreme heat. The pain from these attacks are SO severe it's worse than anything I've ever experienced in my life including having twins naturally. I have a high tolerance for pain, but cannot handle these attacks very well. > > I have had CT scans, MRI's and Ultrasounds of the area and the only thing they see is that my spleen is enlarged and it and the liver are heavily involved with sarc (already knew all that). They just started me on Methotrexate (12.5 mgs.) last week. Tomorrow is my second dose. They are in the process of trying to get approval of Remicade from my insurance company. I've already had two attacks since going on the Meth :-( I hope that no one else is experiencing this horrible pain, but it sure would be nice to know if the docs are correct in thinking it is nerve pain from my spine sarc. Any light on this subject would greatly be appreciated. > > One more question - Just since I started the Meth this week when I brush my teeth I am spitting lots of blood the whole time. This is not the little bit you get if you don't floss your teeth good once in a while. This is blood the whole time I'm brushing. I find no sores in my mouth like the doc said I might get and nothing hurts at all. I've never experienced anything like this before. Anyone on Methotrexate get this? Should I call the doc? > > Wishing everyone cooler days than we're having!> > Thanks for any help.> Diane in Texas> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 Diane, You are welcome, any questions, any time, and I will do my best to answer them. Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Diane Aja Sent: Monday, July 17, 2006 1:29 PM To: Neurosarcoidosis Subject: Re: Marla - Methotrexate I'm not on the Remicade yet. Thanks again Marla for all your info on the MTX. Diane in Texas Re: Severe Upper Abdomen Pain Attacks Attacks (Not Gallbladder) Dear Diane, I too experiece the pain you are discribing for several months. Mine was finially found to be from my colon. I took Levbid for several months and the pain went away almost immediately after I started the meds. I had to stop the Levbid when I developed glaucoma and I was afraid the pain would come back, but it hasn't. I have been on Methotrexate for going on seven years and have had no problems with bleeding. I do mine by injection so I have no stomach upset with taking it. I inject myself one a week. I am on a higher dose now and the ony side effect is some hair lose. Be sure you are taking Folic Acid with the Methotrexate! It is very important. I have been on Remicade for two month (I have had 3 treatments). My insurance denied it for me so I went to the drug company itself and it is giving it to me free for 6 months. I hope you get some relief from your pain and that you have no problem getting the remicade ok'd TTFN Ruth > > Have or do any of you experience pain attacks right under your breastbone area and through your midsection? This is crushing, binding pain that takes away my breath and puts me in the fetal position. It comes on steadily for about 30 minutes and lasts heavily about 10. My poor husband gets the death grip on his hand if he's around. I squeeze his hand so hard. The pain is just unbearable. First off, it is NOT my gallbladder as this was taken out in 11/05. I have sarc all through my spine and my docs all think it is the nerves being pinched in my spine. I also have herniated discs and bone spurs from a long time ago. These attacks seem to be brought on by any kind of exertion, which for me anymore is just walking a couple hours or working around the house. It also seems to be brought on my extreme heat. The pain from these attacks are SO severe it's worse than anything I've ever experienced in my life including having twins naturally. I have a high tolerance for pain, but cannot handle these attacks very well. > > I have had CT scans, MRI's and Ultrasounds of the area and the only thing they see is that my spleen is enlarged and it and the liver are heavily involved with sarc (already knew all that). They just started me on Methotrexate (12.5 mgs.) last week. Tomorrow is my second dose. They are in the process of trying to get approval of Remicade from my insurance company. I've already had two attacks since going on the Meth :-( I hope that no one else is experiencing this horrible pain, but it sure would be nice to know if the docs are correct in thinking it is nerve pain from my spine sarc. Any light on this subject would greatly be appreciated. > > One more question - Just since I started the Meth this week when I brush my teeth I am spitting lots of blood the whole time. This is not the little bit you get if you don't floss your teeth good once in a while. This is blood the whole time I'm brushing. I find no sores in my mouth like the doc said I might get and nothing hurts at all. I've never experienced anything like this before. Anyone on Methotrexate get this? Should I call the doc? > > Wishing everyone cooler days than we're having! > > Thanks for any help. > Diane in Texas > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 Diane, You are welcome, any questions, any time, and I will do my best to answer them. Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Diane Aja Sent: Monday, July 17, 2006 1:29 PM To: Neurosarcoidosis Subject: Re: Marla - Methotrexate I'm not on the Remicade yet. Thanks again Marla for all your info on the MTX. Diane in Texas Re: Severe Upper Abdomen Pain Attacks Attacks (Not Gallbladder) Dear Diane, I too experiece the pain you are discribing for several months. Mine was finially found to be from my colon. I took Levbid for several months and the pain went away almost immediately after I started the meds. I had to stop the Levbid when I developed glaucoma and I was afraid the pain would come back, but it hasn't. I have been on Methotrexate for going on seven years and have had no problems with bleeding. I do mine by injection so I have no stomach upset with taking it. I inject myself one a week. I am on a higher dose now and the ony side effect is some hair lose. Be sure you are taking Folic Acid with the Methotrexate! It is very important. I have been on Remicade for two month (I have had 3 treatments). My insurance denied it for me so I went to the drug company itself and it is giving it to me free for 6 months. I hope you get some relief from your pain and that you have no problem getting the remicade ok'd TTFN Ruth > > Have or do any of you experience pain attacks right under your breastbone area and through your midsection? This is crushing, binding pain that takes away my breath and puts me in the fetal position. It comes on steadily for about 30 minutes and lasts heavily about 10. My poor husband gets the death grip on his hand if he's around. I squeeze his hand so hard. The pain is just unbearable. First off, it is NOT my gallbladder as this was taken out in 11/05. I have sarc all through my spine and my docs all think it is the nerves being pinched in my spine. I also have herniated discs and bone spurs from a long time ago. These attacks seem to be brought on by any kind of exertion, which for me anymore is just walking a couple hours or working around the house. It also seems to be brought on my extreme heat. The pain from these attacks are SO severe it's worse than anything I've ever experienced in my life including having twins naturally. I have a high tolerance for pain, but cannot handle these attacks very well. > > I have had CT scans, MRI's and Ultrasounds of the area and the only thing they see is that my spleen is enlarged and it and the liver are heavily involved with sarc (already knew all that). They just started me on Methotrexate (12.5 mgs.) last week. Tomorrow is my second dose. They are in the process of trying to get approval of Remicade from my insurance company. I've already had two attacks since going on the Meth :-( I hope that no one else is experiencing this horrible pain, but it sure would be nice to know if the docs are correct in thinking it is nerve pain from my spine sarc. Any light on this subject would greatly be appreciated. > > One more question - Just since I started the Meth this week when I brush my teeth I am spitting lots of blood the whole time. This is not the little bit you get if you don't floss your teeth good once in a while. This is blood the whole time I'm brushing. I find no sores in my mouth like the doc said I might get and nothing hurts at all. I've never experienced anything like this before. Anyone on Methotrexate get this? Should I call the doc? > > Wishing everyone cooler days than we're having! > > Thanks for any help. > Diane in Texas > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 Diane, You are welcome, any questions, any time, and I will do my best to answer them. Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Diane Aja Sent: Monday, July 17, 2006 1:29 PM To: Neurosarcoidosis Subject: Re: Marla - Methotrexate I'm not on the Remicade yet. Thanks again Marla for all your info on the MTX. Diane in Texas Re: Severe Upper Abdomen Pain Attacks Attacks (Not Gallbladder) Dear Diane, I too experiece the pain you are discribing for several months. Mine was finially found to be from my colon. I took Levbid for several months and the pain went away almost immediately after I started the meds. I had to stop the Levbid when I developed glaucoma and I was afraid the pain would come back, but it hasn't. I have been on Methotrexate for going on seven years and have had no problems with bleeding. I do mine by injection so I have no stomach upset with taking it. I inject myself one a week. I am on a higher dose now and the ony side effect is some hair lose. Be sure you are taking Folic Acid with the Methotrexate! It is very important. I have been on Remicade for two month (I have had 3 treatments). My insurance denied it for me so I went to the drug company itself and it is giving it to me free for 6 months. I hope you get some relief from your pain and that you have no problem getting the remicade ok'd TTFN Ruth > > Have or do any of you experience pain attacks right under your breastbone area and through your midsection? This is crushing, binding pain that takes away my breath and puts me in the fetal position. It comes on steadily for about 30 minutes and lasts heavily about 10. My poor husband gets the death grip on his hand if he's around. I squeeze his hand so hard. The pain is just unbearable. First off, it is NOT my gallbladder as this was taken out in 11/05. I have sarc all through my spine and my docs all think it is the nerves being pinched in my spine. I also have herniated discs and bone spurs from a long time ago. These attacks seem to be brought on by any kind of exertion, which for me anymore is just walking a couple hours or working around the house. It also seems to be brought on my extreme heat. The pain from these attacks are SO severe it's worse than anything I've ever experienced in my life including having twins naturally. I have a high tolerance for pain, but cannot handle these attacks very well. > > I have had CT scans, MRI's and Ultrasounds of the area and the only thing they see is that my spleen is enlarged and it and the liver are heavily involved with sarc (already knew all that). They just started me on Methotrexate (12.5 mgs.) last week. Tomorrow is my second dose. They are in the process of trying to get approval of Remicade from my insurance company. I've already had two attacks since going on the Meth :-( I hope that no one else is experiencing this horrible pain, but it sure would be nice to know if the docs are correct in thinking it is nerve pain from my spine sarc. Any light on this subject would greatly be appreciated. > > One more question - Just since I started the Meth this week when I brush my teeth I am spitting lots of blood the whole time. This is not the little bit you get if you don't floss your teeth good once in a while. This is blood the whole time I'm brushing. I find no sores in my mouth like the doc said I might get and nothing hurts at all. I've never experienced anything like this before. Anyone on Methotrexate get this? Should I call the doc? > > Wishing everyone cooler days than we're having! > > Thanks for any help. > Diane in Texas > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2006 Report Share Posted July 26, 2006 Hi, Diane. Sorry this reply is so late. I took Mtx for over two years. My local neuro first prescribed it, at 25mg a week, from the beginning! Heck, I didn't know any better. It never bothered me, except I did lose hair. My hair is naturally thick so nobody but my hairdresser & I noticed. After being on the Mtx for a few months, I saw Dr. Baughman in Cincinnati for a consult & he recommended decreasing the dose to 15mg a week. He said they hadn't seen any better results at higher doses. My neuro was interested to know that (at least he does read & listen to the stuff I bring him, unlike some of the bozos we hear about) & I stayed on that dose for another year or so. I never had any GI problems or bleeding gums. We discontinued it because I'm showing signs of early kidney failure. I see a nephrologist next week; might need a kidney biopsy. Ooooo, what fun! Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: <Neurosarcoidosis >Subject: Marla - MethotrexateDate: Sun, 16 Jul 2006 22:54:03 -0500 Hi Marla and anyone else, I just started the MTX two weeks ago and am on 12.5 mgs. also. They said after one month if everything was going well, I would be going up on the dosage. I think she said 15 mgs. just like you were on. I'm not sleeping well at all lately. Last night my left arm was so numb I had to get up and hit it a bunch of times before I could get it to wake up. I really don't know what the MTX is suppose to do without the Remicade, but so far I can't say I feel anything but worse lately. The sarc in my spine is causing such pain in my back and I am now really feeling arthritis like pain in the hands, hips and legs especially at night. Will the MTX eventually help this? Just wondering. Smiles back at ya, Diane in Texas Re: Severe Upper Abdomen Pain Attacks Attacks (Not Gallbladder) Dear Diane,I too experiece the pain you are discribing for several months. Mine was finially found to be from my colon. I took Levbid for several months and the pain went away almost immediately after I started the meds. I had to stop the Levbid when I developed glaucoma and I was afraid the pain would come back, but it hasn't. I have been on Methotrexate for going on seven years and have had no problems with bleeding. I do mine by injection so I have no stomach upset with taking it. I inject myself one a week. I am on a higher dose now and the ony side effect is some hair lose. Be sure you are taking Folic Acid with the Methotrexate! It is very important. I have been on Remicade for two month (I have had 3 treatments). My insurance denied it for me so I went to the drug company itself and it is giving it to me free for 6 months. I hope you get some relief from your pain and that you have no problem getting the remicade ok'dTTFNRuth>> Have or do any of you experience pain attacks right under your breastbone area and through your midsection? This is crushing, binding pain that takes away my breath and puts me in the fetal position. It comes on steadily for about 30 minutes and lasts heavily about 10. My poor husband gets the death grip on his hand if he's around. I squeeze his hand so hard. The pain is just unbearable. First off, it is NOT my gallbladder as this was taken out in 11/05. I have sarc all through my spine and my docs all think it is the nerves being pinched in my spine. I also have herniated discs and bone spurs from a long time ago. These attacks seem to be brought on by any kind of exertion, which for me anymore is just walking a couple hours or working around the house. It also seems to be brought on my extreme heat. The pain from these attacks are SO severe it's worse than anything I've ever experienced in my life including having twins naturally. I have a high tolerance for pain, but cannot handle these attacks very well. > > I have had CT scans, MRI's and Ultrasounds of the area and the only thing they see is that my spleen is enlarged and it and the liver are heavily involved with sarc (already knew all that). They just started me on Methotrexate (12.5 mgs.) last week. Tomorrow is my second dose. They are in the process of trying to get approval of Remicade from my insurance company. I've already had two attacks since going on the Meth :-( I hope that no one else is experiencing this horrible pain, but it sure would be nice to know if the docs are correct in thinking it is nerve pain from my spine sarc. Any light on this subject would greatly be appreciated. > > One more question - Just since I started the Meth this week when I brush my teeth I am spitting lots of blood the whole time. This is not the little bit you get if you don't floss your teeth good once in a while. This is blood the whole time I'm brushing. I find no sores in my mouth like the doc said I might get and nothing hurts at all. I've never experienced anything like this before. Anyone on Methotrexate get this? Should I call the doc? > > Wishing everyone cooler days than we're having!> > Thanks for any help.> Diane in Texas> Check the weather anywhere, anytime - just type "weather" from MSN Search Quote Link to comment Share on other sites More sharing options...
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