question for Diane

[Guest guest]

I read where you are on Cellcept. My doctor wants me to go on it and I'm trying to decide what route and meds to go from here. Been on many but after a year nothing seems to work long term so he has suggested this. Just wondering how it worked for you and if you were able to stay "healthy" and not catch everything there is out there with no immune system. And how long have you been on it? Thanks - Carol

Re: triclosan

Hi Diane,I checked out your original EN questionnaire"<<State what medications or treatments you take for EN, and theireffectiveness: Currently take cell cept, which reduces the t-cells. It used fortransplant patients. Have tried colchicine and thalidimide with little success. The cell cept has seemed to reduce the secondaryinflammation that I get, where my legs swell all around the nodulesand it becomes debilitating. For acute episodes I see a dermatologistthat injects cortisone into the nodules. This is painful, but isgreat because it give quick relief without taking oral meds. If Ican't get to the doctor I do a 7 day round of prednisone, starting at70 mg and tapering by 10 mg a day. This is also very effective, butdo try to avoid the prednisone route (one doctor had me on it for 6 years! I don't see her anymore....). Otherwise I take motrin in themorning and tylenol at bedtime. Also, I wrap my legs with ace bandageswhen I have nodules (which is almost all the time) This seems toreally help keep down the selling and relieves the discomfort.>>Are you still taking cell cept?You and I have had EN for a very long time. You stated you had it 40yrs, and I'm up to 37. Lorri should be happy to know that even though you had RF at pubertyyou are in pretty good health :-)I'm looking forward to your upcoming reports on triclosan. No matterhow it turns out, we will have learned something.Love,

[Guest guest]

Hi Carol,I was on cell cept for a number of years, maybe 5? I was prescribed 500mg twice a day, but only took 500mg once a day because my fingernails got funny and start peeling (I assumed it was the cell cept since it had never happened before). I still had episodes of EN, but the difference seemed to be the secondary inflammation I would get with EN flare ups. After the initial nodule set in, my legs would swell to look like I had elephantitis.... I couldn't walk, incredible, excrutiating pain. The cell cept seemed to keep this from happening.I did however stop using it in early December when I started working in a hospital on a medical-surgical unit (way too many nasty germs and diseases). As you may know from my e-mail, I have since started with the triclosan experiment and have been doing great (nodules as always, but very manageable).In terms of the immunosupression and cellcept, I seemed to be fine. I seemed to be able to fight off

stuff, and did not catch "everything going around". I always get a flu shot however, and wash my hands constantly. II think the cellcept is definately worth a try. I really think my body has changed over the years, as has my EN, and so different things seem to work at different times. Good luck!DianeCarol Back wrote: I read where you are on Cellcept. My doctor wants me to go on it and I'm trying to decide what route and meds to go from here. Been on many but after a year nothing seems to work long term so he has suggested this. Just wondering how it worked for you and if you were able to stay "healthy" and

not catch everything there is out there with no immune system. And how long have you been on it? Thanks - Carol Re: triclosan Hi Diane,I checked out your original EN questionnaire"<<State what medications or treatments you take for EN, and theireffectiveness:

Currently take cell cept, which reduces the t-cells. It used fortransplant patients. Have tried colchicine and thalidimide with little success. The cell cept has seemed to reduce the secondaryinflammation that I get, where my legs swell all around the nodulesand it becomes debilitating. For acute episodes I see a dermatologistthat injects cortisone into the nodules. This is painful, but isgreat because it give quick relief without taking oral meds. If Ican't get to the doctor I do a 7 day round of prednisone, starting at70 mg and tapering by 10 mg a day. This is also very effective, butdo try to avoid the prednisone route (one doctor had me on it for 6 years! I don't see her anymore....). Otherwise I take motrin in themorning and tylenol at bedtime. Also, I wrap my legs with ace bandageswhen I have nodules (which is almost all the time) This seems toreally help keep down the selling and relieves the discomfort.>>Are you still taking cell cept?You and I have had EN for a very long time. You stated you had it 40yrs, and I'm up to 37. Lorri should be happy to know that even though you had RF at pubertyyou are in pretty good health :-)I'm looking forward to your upcoming reports on triclosan. No matterhow it turns out, we will have learned something.Love,

Brings words and photos together (easily) with PhotoMail - it's free and works with Yahoo! Mail.

[Guest guest]

Hi Carol,I was on cell cept for a number of years, maybe 5? I was prescribed 500mg twice a day, but only took 500mg once a day because my fingernails got funny and start peeling (I assumed it was the cell cept since it had never happened before). I still had episodes of EN, but the difference seemed to be the secondary inflammation I would get with EN flare ups. After the initial nodule set in, my legs would swell to look like I had elephantitis.... I couldn't walk, incredible, excrutiating pain. The cell cept seemed to keep this from happening.I did however stop using it in early December when I started working in a hospital on a medical-surgical unit (way too many nasty germs and diseases). As you may know from my e-mail, I have since started with the triclosan experiment and have been doing great (nodules as always, but very manageable).In terms of the immunosupression and cellcept, I seemed to be fine. I seemed to be able to fight off

stuff, and did not catch "everything going around". I always get a flu shot however, and wash my hands constantly. II think the cellcept is definately worth a try. I really think my body has changed over the years, as has my EN, and so different things seem to work at different times. Good luck!DianeCarol Back wrote: I read where you are on Cellcept. My doctor wants me to go on it and I'm trying to decide what route and meds to go from here. Been on many but after a year nothing seems to work long term so he has suggested this. Just wondering how it worked for you and if you were able to stay "healthy" and

not catch everything there is out there with no immune system. And how long have you been on it? Thanks - Carol Re: triclosan Hi Diane,I checked out your original EN questionnaire"<<State what medications or treatments you take for EN, and theireffectiveness:

Currently take cell cept, which reduces the t-cells. It used fortransplant patients. Have tried colchicine and thalidimide with little success. The cell cept has seemed to reduce the secondaryinflammation that I get, where my legs swell all around the nodulesand it becomes debilitating. For acute episodes I see a dermatologistthat injects cortisone into the nodules. This is painful, but isgreat because it give quick relief without taking oral meds. If Ican't get to the doctor I do a 7 day round of prednisone, starting at70 mg and tapering by 10 mg a day. This is also very effective, butdo try to avoid the prednisone route (one doctor had me on it for 6 years! I don't see her anymore....). Otherwise I take motrin in themorning and tylenol at bedtime. Also, I wrap my legs with ace bandageswhen I have nodules (which is almost all the time) This seems toreally help keep down the selling and relieves the discomfort.>>Are you still taking cell cept?You and I have had EN for a very long time. You stated you had it 40yrs, and I'm up to 37. Lorri should be happy to know that even though you had RF at pubertyyou are in pretty good health :-)I'm looking forward to your upcoming reports on triclosan. No matterhow it turns out, we will have learned something.Love,

Brings words and photos together (easily) with PhotoMail - it's free and works with Yahoo! Mail.

[Guest guest]

Hi Carol,I was on cell cept for a number of years, maybe 5? I was prescribed 500mg twice a day, but only took 500mg once a day because my fingernails got funny and start peeling (I assumed it was the cell cept since it had never happened before). I still had episodes of EN, but the difference seemed to be the secondary inflammation I would get with EN flare ups. After the initial nodule set in, my legs would swell to look like I had elephantitis.... I couldn't walk, incredible, excrutiating pain. The cell cept seemed to keep this from happening.I did however stop using it in early December when I started working in a hospital on a medical-surgical unit (way too many nasty germs and diseases). As you may know from my e-mail, I have since started with the triclosan experiment and have been doing great (nodules as always, but very manageable).In terms of the immunosupression and cellcept, I seemed to be fine. I seemed to be able to fight off

stuff, and did not catch "everything going around". I always get a flu shot however, and wash my hands constantly. II think the cellcept is definately worth a try. I really think my body has changed over the years, as has my EN, and so different things seem to work at different times. Good luck!DianeCarol Back wrote: I read where you are on Cellcept. My doctor wants me to go on it and I'm trying to decide what route and meds to go from here. Been on many but after a year nothing seems to work long term so he has suggested this. Just wondering how it worked for you and if you were able to stay "healthy" and

not catch everything there is out there with no immune system. And how long have you been on it? Thanks - Carol Re: triclosan Hi Diane,I checked out your original EN questionnaire"<<State what medications or treatments you take for EN, and theireffectiveness:

Currently take cell cept, which reduces the t-cells. It used fortransplant patients. Have tried colchicine and thalidimide with little success. The cell cept has seemed to reduce the secondaryinflammation that I get, where my legs swell all around the nodulesand it becomes debilitating. For acute episodes I see a dermatologistthat injects cortisone into the nodules. This is painful, but isgreat because it give quick relief without taking oral meds. If Ican't get to the doctor I do a 7 day round of prednisone, starting at70 mg and tapering by 10 mg a day. This is also very effective, butdo try to avoid the prednisone route (one doctor had me on it for 6 years! I don't see her anymore....). Otherwise I take motrin in themorning and tylenol at bedtime. Also, I wrap my legs with ace bandageswhen I have nodules (which is almost all the time) This seems toreally help keep down the selling and relieves the discomfort.>>Are you still taking cell cept?You and I have had EN for a very long time. You stated you had it 40yrs, and I'm up to 37. Lorri should be happy to know that even though you had RF at pubertyyou are in pretty good health :-)I'm looking forward to your upcoming reports on triclosan. No matterhow it turns out, we will have learned something.Love,

Brings words and photos together (easily) with PhotoMail - it's free and works with Yahoo! Mail.