Re: Re: Severe Upper Abdomen Pain - Ruth

[Guest guest]

Dear Ruth,

How did they finally find out the pain came from your colon? Did they do a certain test on you? Did you experience problems when you ate food? I do not. Did you have the same problems like me and have attacks after being in the heat, sun, or after exertion? I am so curios to know. So it sounds like you don't have the attacks anymore since you stopped taking the Levbid? I've never heard of that drug. I'll have to look it up. I'm assuming one of the side affects is that it can cause sudden glaucoma? I'm sorry that happened to you. I take Topamax and that can also do this. I had to have that "special" glaucoma test done every six months even before sarc diagnosis because of the Topamax and also have much of that disease in my family. Are your eyes o.k. now? I hope so. I have a 56 year old sister who is blind from it.

As for the MTX, I haven't had any more bleeding. On an embarrassing note...........I am having diarrhea problems though. I could hardly make it to the bathroom. I just took my pills for the second time yesterday and my bowels were horrible yesterday and this morning. Same thing last Friday and Saturday. I guess this is normal for some people? Other than that, no nausea (I'm taking Folic Acid daily), and just a little bit more tired than I usually am. As for your hair loss, how much did you lose? I was told by docs that you don't lose your hair on MTX and then I've been reading online that you can! I was not happy. My hair is pretty thin as it is. Do you have to be on high doses for a long time for that to happen? They are going to up my dose as I go along. I'm just starting out.

Thanks again Ruth. Hope you have a great day!

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>

[Guest guest]

Dear Ruth,

How did they finally find out the pain came from your colon? Did they do a certain test on you? Did you experience problems when you ate food? I do not. Did you have the same problems like me and have attacks after being in the heat, sun, or after exertion? I am so curios to know. So it sounds like you don't have the attacks anymore since you stopped taking the Levbid? I've never heard of that drug. I'll have to look it up. I'm assuming one of the side affects is that it can cause sudden glaucoma? I'm sorry that happened to you. I take Topamax and that can also do this. I had to have that "special" glaucoma test done every six months even before sarc diagnosis because of the Topamax and also have much of that disease in my family. Are your eyes o.k. now? I hope so. I have a 56 year old sister who is blind from it.

As for the MTX, I haven't had any more bleeding. On an embarrassing note...........I am having diarrhea problems though. I could hardly make it to the bathroom. I just took my pills for the second time yesterday and my bowels were horrible yesterday and this morning. Same thing last Friday and Saturday. I guess this is normal for some people? Other than that, no nausea (I'm taking Folic Acid daily), and just a little bit more tired than I usually am. As for your hair loss, how much did you lose? I was told by docs that you don't lose your hair on MTX and then I've been reading online that you can! I was not happy. My hair is pretty thin as it is. Do you have to be on high doses for a long time for that to happen? They are going to up my dose as I go along. I'm just starting out.

Thanks again Ruth. Hope you have a great day!

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>

[Guest guest]

Dear Ruth,

How did they finally find out the pain came from your colon? Did they do a certain test on you? Did you experience problems when you ate food? I do not. Did you have the same problems like me and have attacks after being in the heat, sun, or after exertion? I am so curios to know. So it sounds like you don't have the attacks anymore since you stopped taking the Levbid? I've never heard of that drug. I'll have to look it up. I'm assuming one of the side affects is that it can cause sudden glaucoma? I'm sorry that happened to you. I take Topamax and that can also do this. I had to have that "special" glaucoma test done every six months even before sarc diagnosis because of the Topamax and also have much of that disease in my family. Are your eyes o.k. now? I hope so. I have a 56 year old sister who is blind from it.

As for the MTX, I haven't had any more bleeding. On an embarrassing note...........I am having diarrhea problems though. I could hardly make it to the bathroom. I just took my pills for the second time yesterday and my bowels were horrible yesterday and this morning. Same thing last Friday and Saturday. I guess this is normal for some people? Other than that, no nausea (I'm taking Folic Acid daily), and just a little bit more tired than I usually am. As for your hair loss, how much did you lose? I was told by docs that you don't lose your hair on MTX and then I've been reading online that you can! I was not happy. My hair is pretty thin as it is. Do you have to be on high doses for a long time for that to happen? They are going to up my dose as I go along. I'm just starting out.

Thanks again Ruth. Hope you have a great day!

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>

[Guest guest]

, I lost a lot of hair from Topamax. I probably lost half of my hair and that was a lot. I stopped the topamax and wnt on Lyrica. BarvDiane Aja wrote: Dear Ruth, How did they finally find out the pain came from your colon? Did they do a certain test on you? Did you experience problems when you ate food? I do not. Did you have the same problems like me and have attacks after being in the heat, sun, or after exertion? I am so curios to know. So it sounds like you don't have the attacks anymore since you stopped taking the Levbid? I've never heard

of that drug. I'll have to look it up. I'm assuming one of the side affects is that it can cause sudden glaucoma? I'm sorry that happened to you. I take Topamax and that can also do this. I had to have that "special" glaucoma test done every six months even before sarc diagnosis because of the Topamax and also have much of that disease in my family. Are your eyes o.k. now? I hope so. I have a 56 year old sister who is blind from it. As for the MTX, I haven't had any more bleeding. On an embarrassing note...........I am having diarrhea problems though. I could hardly make it to the bathroom. I just took my pills for the second time yesterday and my bowels were horrible yesterday and this morning. Same thing last Friday and Saturday. I guess this is normal for some people? Other than that,

no nausea (I'm taking Folic Acid daily), and just a little bit more tired than I usually am. As for your hair loss, how much did you lose? I was told by docs that you don't lose your hair on MTX and then I've been reading online that you can! I was not happy. My hair is pretty thin as it is. Do you have to be on high doses for a long time for that to happen? They are going to up my dose as I go along. I'm just starting out. Thanks again Ruth. Hope you have a great day! 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>

See the all-new, redesigned Yahoo.com. Check it out.

[Guest guest]

, I lost a lot of hair from Topamax. I probably lost half of my hair and that was a lot. I stopped the topamax and wnt on Lyrica. BarvDiane Aja wrote: Dear Ruth, How did they finally find out the pain came from your colon? Did they do a certain test on you? Did you experience problems when you ate food? I do not. Did you have the same problems like me and have attacks after being in the heat, sun, or after exertion? I am so curios to know. So it sounds like you don't have the attacks anymore since you stopped taking the Levbid? I've never heard

of that drug. I'll have to look it up. I'm assuming one of the side affects is that it can cause sudden glaucoma? I'm sorry that happened to you. I take Topamax and that can also do this. I had to have that "special" glaucoma test done every six months even before sarc diagnosis because of the Topamax and also have much of that disease in my family. Are your eyes o.k. now? I hope so. I have a 56 year old sister who is blind from it. As for the MTX, I haven't had any more bleeding. On an embarrassing note...........I am having diarrhea problems though. I could hardly make it to the bathroom. I just took my pills for the second time yesterday and my bowels were horrible yesterday and this morning. Same thing last Friday and Saturday. I guess this is normal for some people? Other than that,

no nausea (I'm taking Folic Acid daily), and just a little bit more tired than I usually am. As for your hair loss, how much did you lose? I was told by docs that you don't lose your hair on MTX and then I've been reading online that you can! I was not happy. My hair is pretty thin as it is. Do you have to be on high doses for a long time for that to happen? They are going to up my dose as I go along. I'm just starting out. Thanks again Ruth. Hope you have a great day! 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>

See the all-new, redesigned Yahoo.com. Check it out.

[Guest guest]

, I lost a lot of hair from Topamax. I probably lost half of my hair and that was a lot. I stopped the topamax and wnt on Lyrica. BarvDiane Aja wrote: Dear Ruth, How did they finally find out the pain came from your colon? Did they do a certain test on you? Did you experience problems when you ate food? I do not. Did you have the same problems like me and have attacks after being in the heat, sun, or after exertion? I am so curios to know. So it sounds like you don't have the attacks anymore since you stopped taking the Levbid? I've never heard

of that drug. I'll have to look it up. I'm assuming one of the side affects is that it can cause sudden glaucoma? I'm sorry that happened to you. I take Topamax and that can also do this. I had to have that "special" glaucoma test done every six months even before sarc diagnosis because of the Topamax and also have much of that disease in my family. Are your eyes o.k. now? I hope so. I have a 56 year old sister who is blind from it. As for the MTX, I haven't had any more bleeding. On an embarrassing note...........I am having diarrhea problems though. I could hardly make it to the bathroom. I just took my pills for the second time yesterday and my bowels were horrible yesterday and this morning. Same thing last Friday and Saturday. I guess this is normal for some people? Other than that,

no nausea (I'm taking Folic Acid daily), and just a little bit more tired than I usually am. As for your hair loss, how much did you lose? I was told by docs that you don't lose your hair on MTX and then I've been reading online that you can! I was not happy. My hair is pretty thin as it is. Do you have to be on high doses for a long time for that to happen? They are going to up my dose as I go along. I'm just starting out. Thanks again Ruth. Hope you have a great day! 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>

See the all-new, redesigned Yahoo.com. Check it out.

[Guest guest]

Hi

Diane,

Hope you

don’t mind me reading your email to Ruth. I have been on Mtx for 3 years

now, and had diarrhea every time I took it in the beginning, then it got

better, now it’s hit and miss, if I’m more tired it will hit me, if

I’m able to sleep a little more then I don’t have much problem with

it. I really can’t say that I am loosing much hair from taking it. However,

these drugs can affect everyone differently. But normally on such a low dose

as what we usually take, losing hair should not be a big problem. What dose

are you on? I found that anything over 15 doesn’t help anymore then

15mgs. I’m on 12.5 right now, as trying to go down on it after being on

it for 3 years.

I think

you’ll see the diarrhea getting better with time, don’t forget to

keep you fluid intake up so you don’t become dehydrated, as that will

make everything worse too.

SmilesJ

Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Diane Aja

Sent: Saturday, July 15, 2006

11:27 AM

To: Neurosarcoidosis

Subject: Re:

Re: Severe Upper Abdomen Pain - Ruth

Dear Ruth,

How did they finally find out the pain came from your

colon? Did they do a certain test on you? Did you experience

problems when you ate food? I do not. Did you have the same

problems like me and have attacks after being in the heat, sun, or after

exertion? I am so curios to know. So it sounds like you don't

have the attacks anymore since you stopped taking the Levbid? I've

never heard of that drug. I'll have to look it up. I'm assuming one

of the side affects is that it can cause sudden glaucoma? I'm sorry that

happened to you. I take Topamax and that can also do this. I had to

have that " special " glaucoma test done every six months even before

sarc diagnosis because of the Topamax and also have much of that disease

in my family. Are your eyes o.k. now? I hope so. I have a 56

year old sister who is blind from it.

As for the MTX, I haven't had any more bleeding. On an

embarrassing note...........I am having diarrhea problems though. I could

hardly make it to the bathroom. I just took my pills for the second time

yesterday and my bowels were horrible yesterday and this morning.

Same thing last Friday and Saturday. I guess this is normal for some

people? Other than that, no nausea (I'm taking Folic Acid daily), and

just a little bit more tired than I usually am. As for your hair loss,

how much did you lose? I was told by docs that you don't lose your hair

on MTX and then I've been reading online that you can! I was not happy.

My hair is pretty thin as it is. Do you have to be on high doses for a

long time for that to happen? They are going to up my dose as I go

along. I'm just starting out.

Thanks again Ruth. Hope you have a great day!

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

>

[Guest guest]

the MTX, I haven't had any more bleeding. On an embarrassing note...........I am having diarrhea problems though. I could hardly make it to the bathroom. I just took my pills for the second time yesterday and my bowels were horrible yesterday and this morning. Same thing last Friday and Saturday. I guess this is normal for some people? Other than that, no nausea (I'm taking Folic Acid daily), and just a little bit more tired than I usually am.

Do be aware that mouth ulcers can be a side effect of MTX- so if you start having more problems with it-- see your MD. As for the bowel stuff-- try some Liquid Acidophylis capsules--works better than any of the prescription or over the counter anti-diarrheals.

MTX should bring down the inflammation in your system, and most people see results in a month to 6 wks.

If you continue to have problems, one thing they can do is give it to you by injection, and that saves your liver and guts.

Hope this helps,

Tracie

NS Coowner/moderator

[Guest guest]

the MTX, I haven't had any more bleeding. On an embarrassing note...........I am having diarrhea problems though. I could hardly make it to the bathroom. I just took my pills for the second time yesterday and my bowels were horrible yesterday and this morning. Same thing last Friday and Saturday. I guess this is normal for some people? Other than that, no nausea (I'm taking Folic Acid daily), and just a little bit more tired than I usually am.

Do be aware that mouth ulcers can be a side effect of MTX- so if you start having more problems with it-- see your MD. As for the bowel stuff-- try some Liquid Acidophylis capsules--works better than any of the prescription or over the counter anti-diarrheals.

MTX should bring down the inflammation in your system, and most people see results in a month to 6 wks.

If you continue to have problems, one thing they can do is give it to you by injection, and that saves your liver and guts.

Hope this helps,

Tracie

NS Coowner/moderator

[Guest guest]

the MTX, I haven't had any more bleeding. On an embarrassing note...........I am having diarrhea problems though. I could hardly make it to the bathroom. I just took my pills for the second time yesterday and my bowels were horrible yesterday and this morning. Same thing last Friday and Saturday. I guess this is normal for some people? Other than that, no nausea (I'm taking Folic Acid daily), and just a little bit more tired than I usually am.

Do be aware that mouth ulcers can be a side effect of MTX- so if you start having more problems with it-- see your MD. As for the bowel stuff-- try some Liquid Acidophylis capsules--works better than any of the prescription or over the counter anti-diarrheals.

MTX should bring down the inflammation in your system, and most people see results in a month to 6 wks.

If you continue to have problems, one thing they can do is give it to you by injection, and that saves your liver and guts.

Hope this helps,

Tracie

NS Coowner/moderator

[Guest guest]

Tracie, this is just a question, does taking yeast

pills help at all with this kind of diarhea, like when

someone has take to many antibiotics?? Thanks Connie

--- tiodaat@... wrote:

> In a message dated 7/15/06 4:47:37 PM Pacific

> Daylight Time,

> dianeaja@... writes:

>

>

> > the MTX, I haven't had any more bleeding. On an

> embarrassing

> > note...........I am having diarrhea problems

> though. I could hardly make it to the

> > bathroom. I just took my pills for the second

> time yesterday and my bowels were

> > horrible yesterday and this morning. Same thing

> last Friday and Saturday. I

> > guess this is normal for some people? Other than

> that, no nausea (I'm taking

> > Folic Acid daily), and just a little bit more

> tired than I usually am.

>

> Do be aware that mouth ulcers can be a side effect

> of MTX- so if you start

> having more problems with it-- see your MD. As for

> the bowel stuff-- try some

> Liquid Acidophylis capsules--works better than any

> of the prescription or over

> the counter anti-diarrheals.

> MTX should bring down the inflammation in your

> system, and most people see

> results in a month to 6 wks.

> If you continue to have problems, one thing they can

> do is give it to you by

> injection, and that saves your liver and guts.

>

> Hope this helps,

> Tracie

> NS Coowner/moderator

>

__________________________________________________

[Guest guest]

Tracie, this is just a question, does taking yeast

pills help at all with this kind of diarhea, like when

someone has take to many antibiotics?? Thanks Connie

If you're thinking Diflucan-- no, it doesn't help stop the diarrhea. But if your talking about the Acidophyllus tablets-- yep, that'll knock the diarrhea out really fast. I like the Liquid Acidophyllus rather than the tablets, because it seems to work even quicker.

Tracie