Remicade hearing

[Guest guest]

well just got up from a nap, meet with Drs. to hear our appeal on Remicade this a.m. had to be there at 730 am, I do not function well then, but had to. Anyway, they say that Remicade is not FDA approved for NS, but neither is Methotrexate but they are paying for that, and talked about the progression since it flare again, then the Dr on telecom (chicken) started asking me questions, " I see your MRI is neg., have you had a LP, I have not in 4 four year, then how about an emg, not in four years, etc.. so then how did you come about the dx of NS, or even Sarcoid, So I told him that i did have a positive lymph node from bx 13 years ago, and he just said " oh " , then asked why I haven't tried Imuran, I said because the Dr. didn't order it, he asked if I was seeing a Neurologist, YES, then he went over the risks involved with Remicade, OK guys have you heard this, MS ?, and then on and on about permanent nerve damage? and even Ca, which I do know of. I was silent, Like ya your point is? then he asked my symptoms, of which my husband had stated at the beginning of the hearing, so I told him, then he just said Oh again, the two Dr's present where then able to ask any questions, and they declined, so that was it????? He brought up Imuran a couple times, I know someone is taking it, right, and if you are is it helping? My doctor just never brought this up.

OK I am just ready to scream, yesterday I went out to lunch with a friend for her birthday, we all decided to go to the mall, I had my cane, going in was OK, we just went into a third of the mall, looked around, then left, I didn't think I was going to make it out of the mall, I was walking in slowwwwwwwwww motion, so hard to move one foot in front of the other, so it was both legs, Hhmmmmmmmmmm. what next, my husband told them I was using a cane and may very well be in a wheelchair very soon without help. He is prepared to sue them if necessary. In the meantime????????????????

I will keep my chin up, just wonder how it ever came about that the insurance company now plays doctor??? I know God has a plan for me, and it unfolds every day, so tomorrow hopefully we will know and move on from there.

I hope you all are having a pain free day, blessings, Marla

[Guest guest]

well just got up from a nap, meet with Drs. to hear our appeal on Remicade this a.m. had to be there at 730 am, I do not function well then, but had to. Anyway, they say that Remicade is not FDA approved for NS, but neither is Methotrexate but they are paying for that, and talked about the progression since it flare again, then the Dr on telecom (chicken) started asking me questions, " I see your MRI is neg., have you had a LP, I have not in 4 four year, then how about an emg, not in four years, etc.. so then how did you come about the dx of NS, or even Sarcoid, So I told him that i did have a positive lymph node from bx 13 years ago, and he just said " oh " , then asked why I haven't tried Imuran, I said because the Dr. didn't order it, he asked if I was seeing a Neurologist, YES, then he went over the risks involved with Remicade, OK guys have you heard this, MS ?, and then on and on about permanent nerve damage? and even Ca, which I do know of. I was silent, Like ya your point is? then he asked my symptoms, of which my husband had stated at the beginning of the hearing, so I told him, then he just said Oh again, the two Dr's present where then able to ask any questions, and they declined, so that was it????? He brought up Imuran a couple times, I know someone is taking it, right, and if you are is it helping? My doctor just never brought this up.

OK I am just ready to scream, yesterday I went out to lunch with a friend for her birthday, we all decided to go to the mall, I had my cane, going in was OK, we just went into a third of the mall, looked around, then left, I didn't think I was going to make it out of the mall, I was walking in slowwwwwwwwww motion, so hard to move one foot in front of the other, so it was both legs, Hhmmmmmmmmmm. what next, my husband told them I was using a cane and may very well be in a wheelchair very soon without help. He is prepared to sue them if necessary. In the meantime????????????????

I will keep my chin up, just wonder how it ever came about that the insurance company now plays doctor??? I know God has a plan for me, and it unfolds every day, so tomorrow hopefully we will know and move on from there.

I hope you all are having a pain free day, blessings, Marla

[Guest guest]

Marla,

Ok- so they want you to start at the bottom with Imuran-- and hopefully still have function in your legs when they get thru screwing around. Yes, it may work-- but my concern is that so much time has passed, they've tried Plaquenil, they've tried and have you on MTX-- and it's not stopping the progression anymore-- so it's time for the big guns.

Sure, Remicade has possible side effects-- the same ones that Imuran has. Yep, Imuran is cheaper-- but it too is not FDA approved for sarcoidosis. Neither is Arava, Plaquenil, Methotrexate or Enbrel or Humira or hmmm-- that leaves us with Prednisone.

My dear friend, can I come with a baseball bat-- I'll only be good for one swing-- but it'll be mighty!

My heart goes out to you,

Tracie

Remicade hearing

well just got up from a nap, meet with Drs. to hear our appeal on Remicade this a.m. had to be there at 730 am, I do not function well then, but had to. Anyway, they say that Remicade is not FDA approved for NS, but neither is Methotrexate but they are paying for that, and talked about the progression since it flare again, then the Dr on telecom (chicken) started asking me questions,"I see your MRI is neg., have you had a LP, I have not in 4 four year, then how about an emg, not in four years, etc.. so then how did you come about the dx of NS, or even Sarcoid, So I told him that i did have a positive lymph node from bx 13 years ago, and he just said "oh", then asked why I haven't tried Imuran, I said because the Dr. didn't order it, he asked if I was seeing a Neurologist, YES, then he went over the risks involved with Remicade, OK guys have you heard this, MS ?, and then on and on about permanent nerve damage? and even Ca, which I do know

of. I was silent, Like ya your point is? then he asked my symptoms, of which my husband had stated at the beginning of the hearing, so I told him, then he just said Oh again, the two Dr's present where then able to ask any questions, and they declined, so that was it????? He brought up Imuran a couple times, I know someone is taking it, right, and if you are is it helping? My doctor just never brought this up. OK I am just ready to scream, yesterday I went out to lunch with a friend for her birthday, we all decided to go to the mall, I had my cane, going in was OK, we just went into a third of the mall, looked around, then left, I didn't think I was going to make it out of the mall, I was walking in slowwwwwwwwww motion, so hard to move one foot in front of the other, so it was both legs, Hhmmmmmmmmmm. what next, my husband told them I was using a cane and may very well be in a wheelchair very soon without

help. He is prepared to sue them if necessary. In the meantime???? ????????? ??? I will keep my chin up, just wonder how it ever came about that the insurance company now plays doctor??? I know God has a plan for me, and it unfolds every day, so tomorrow hopefully we will know and move on from there. I hope you all are having a pain free day, blessings, Marla

[Guest guest]

Marla,

Ok- so they want you to start at the bottom with Imuran-- and hopefully still have function in your legs when they get thru screwing around. Yes, it may work-- but my concern is that so much time has passed, they've tried Plaquenil, they've tried and have you on MTX-- and it's not stopping the progression anymore-- so it's time for the big guns.

Sure, Remicade has possible side effects-- the same ones that Imuran has. Yep, Imuran is cheaper-- but it too is not FDA approved for sarcoidosis. Neither is Arava, Plaquenil, Methotrexate or Enbrel or Humira or hmmm-- that leaves us with Prednisone.

My dear friend, can I come with a baseball bat-- I'll only be good for one swing-- but it'll be mighty!

My heart goes out to you,

Tracie

Remicade hearing

well just got up from a nap, meet with Drs. to hear our appeal on Remicade this a.m. had to be there at 730 am, I do not function well then, but had to. Anyway, they say that Remicade is not FDA approved for NS, but neither is Methotrexate but they are paying for that, and talked about the progression since it flare again, then the Dr on telecom (chicken) started asking me questions,"I see your MRI is neg., have you had a LP, I have not in 4 four year, then how about an emg, not in four years, etc.. so then how did you come about the dx of NS, or even Sarcoid, So I told him that i did have a positive lymph node from bx 13 years ago, and he just said "oh", then asked why I haven't tried Imuran, I said because the Dr. didn't order it, he asked if I was seeing a Neurologist, YES, then he went over the risks involved with Remicade, OK guys have you heard this, MS ?, and then on and on about permanent nerve damage? and even Ca, which I do know

of. I was silent, Like ya your point is? then he asked my symptoms, of which my husband had stated at the beginning of the hearing, so I told him, then he just said Oh again, the two Dr's present where then able to ask any questions, and they declined, so that was it????? He brought up Imuran a couple times, I know someone is taking it, right, and if you are is it helping? My doctor just never brought this up. OK I am just ready to scream, yesterday I went out to lunch with a friend for her birthday, we all decided to go to the mall, I had my cane, going in was OK, we just went into a third of the mall, looked around, then left, I didn't think I was going to make it out of the mall, I was walking in slowwwwwwwwww motion, so hard to move one foot in front of the other, so it was both legs, Hhmmmmmmmmmm. what next, my husband told them I was using a cane and may very well be in a wheelchair very soon without

help. He is prepared to sue them if necessary. In the meantime???? ????????? ??? I will keep my chin up, just wonder how it ever came about that the insurance company now plays doctor??? I know God has a plan for me, and it unfolds every day, so tomorrow hopefully we will know and move on from there. I hope you all are having a pain free day, blessings, Marla

[Guest guest]

I am new to all of this and learning so much from all of you. Thank you! So, I have been on and off of prednisone for one year. I have been on Plaquenil for a week. It seems to help with the pain. What else should I expect it to do? What is the next thing to try? Methotrexate? I have tried to get them to do this for a long time, but they didn't have a biopsy that said sarcoidosis so were dragging their feet. I have all the signs and symptoms, >40nodules in my lungs, my last ace was 92 and NS symptoms and the pulm doc kept saying he wanted a lung bx to verify the dx. I got a second opinion and that pulm doc said no, the risk of open lung bx is too high. The neurologist is the one who finally started the plaquenil. I am not sure he's really experienced at NS though.tracie feldhaus wrote: Marla, Ok- so they want you to start at the bottom with Imuran-- and hopefully still have function in your legs when they get thru screwing around. Yes, it may work-- but my concern is that so much time has passed, they've tried Plaquenil, they've tried and have you on MTX-- and it's not stopping the progression anymore-- so it's time for the big guns. Sure, Remicade has possible side effects-- the same ones that Imuran has. Yep, Imuran is cheaper-- but it too is not FDA approved for sarcoidosis. Neither is Arava,

Plaquenil, Methotrexate or Enbrel or Humira or hmmm-- that leaves us with Prednisone. My dear friend, can I come with a baseball bat-- I'll only be good for one swing-- but it'll be mighty! My heart goes out to you, Tracie Remicade hearing well just got up from a nap, meet with Drs. to hear our appeal on Remicade this a.m. had to be there at 730 am, I do not function well then, but had to. Anyway, they say that Remicade is not FDA approved for

NS, but neither is Methotrexate but they are paying for that, and talked about the progression since it flare again, then the Dr on telecom (chicken) started asking me questions,"I see your MRI is neg., have you had a LP, I have not in 4 four year, then how about an emg, not in four years, etc.. so then how did you come about the dx of NS, or even Sarcoid, So I told him that i did have a positive lymph node from bx 13 years ago, and he just said "oh", then asked why I haven't tried Imuran, I said because the Dr. didn't order it, he asked if I was seeing a Neurologist, YES, then he went over the risks involved with Remicade, OK guys have you heard this, MS ?, and then on and on about permanent nerve damage? and even Ca, which I do know of. I was silent, Like ya your point is? then he asked my symptoms, of which my husband had stated at the beginning of the hearing, so I told him, then he just said Oh again, the two Dr's present where then able to ask any

questions, and they declined, so that was it????? He brought up Imuran a couple times, I know someone is taking it, right, and if you are is it helping? My doctor just never brought this up. OK I am just ready to scream, yesterday I went out to lunch with a friend for her birthday, we all decided to go to the mall, I had my cane, going in was OK, we just went into a third of the mall, looked around, then left, I didn't think I was going to make it out of the mall, I was walking in slowwwwwwwwww motion, so hard to move one foot in front of the other, so it was both legs, Hhmmmmmmmmmm. what next, my husband told them I was using a cane and may very well be in a wheelchair very soon without help. He is prepared to sue them if necessary. In the meantime???? ????????? ??? I will keep my chin up, just wonder how it ever came about that the insurance company now plays doctor??? I know God has a plan for me, and it

unfolds every day, so tomorrow hopefully we will know and move on from there. I hope you all are having a pain free day, blessings, Marla

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

I am new to all of this and learning so much from all of you. Thank you! So, I have been on and off of prednisone for one year. I have been on Plaquenil for a week. It seems to help with the pain. What else should I expect it to do? What is the next thing to try? Methotrexate? I have tried to get them to do this for a long time, but they didn't have a biopsy that said sarcoidosis so were dragging their feet. I have all the signs and symptoms, >40nodules in my lungs, my last ace was 92 and NS symptoms and the pulm doc kept saying he wanted a lung bx to verify the dx. I got a second opinion and that pulm doc said no, the risk of open lung bx is too high. The neurologist is the one who finally started the plaquenil. I am not sure he's really experienced at NS though.tracie feldhaus wrote: Marla, Ok- so they want you to start at the bottom with Imuran-- and hopefully still have function in your legs when they get thru screwing around. Yes, it may work-- but my concern is that so much time has passed, they've tried Plaquenil, they've tried and have you on MTX-- and it's not stopping the progression anymore-- so it's time for the big guns. Sure, Remicade has possible side effects-- the same ones that Imuran has. Yep, Imuran is cheaper-- but it too is not FDA approved for sarcoidosis. Neither is Arava,

Plaquenil, Methotrexate or Enbrel or Humira or hmmm-- that leaves us with Prednisone. My dear friend, can I come with a baseball bat-- I'll only be good for one swing-- but it'll be mighty! My heart goes out to you, Tracie Remicade hearing well just got up from a nap, meet with Drs. to hear our appeal on Remicade this a.m. had to be there at 730 am, I do not function well then, but had to. Anyway, they say that Remicade is not FDA approved for

NS, but neither is Methotrexate but they are paying for that, and talked about the progression since it flare again, then the Dr on telecom (chicken) started asking me questions,"I see your MRI is neg., have you had a LP, I have not in 4 four year, then how about an emg, not in four years, etc.. so then how did you come about the dx of NS, or even Sarcoid, So I told him that i did have a positive lymph node from bx 13 years ago, and he just said "oh", then asked why I haven't tried Imuran, I said because the Dr. didn't order it, he asked if I was seeing a Neurologist, YES, then he went over the risks involved with Remicade, OK guys have you heard this, MS ?, and then on and on about permanent nerve damage? and even Ca, which I do know of. I was silent, Like ya your point is? then he asked my symptoms, of which my husband had stated at the beginning of the hearing, so I told him, then he just said Oh again, the two Dr's present where then able to ask any

questions, and they declined, so that was it????? He brought up Imuran a couple times, I know someone is taking it, right, and if you are is it helping? My doctor just never brought this up. OK I am just ready to scream, yesterday I went out to lunch with a friend for her birthday, we all decided to go to the mall, I had my cane, going in was OK, we just went into a third of the mall, looked around, then left, I didn't think I was going to make it out of the mall, I was walking in slowwwwwwwwww motion, so hard to move one foot in front of the other, so it was both legs, Hhmmmmmmmmmm. what next, my husband told them I was using a cane and may very well be in a wheelchair very soon without help. He is prepared to sue them if necessary. In the meantime???? ????????? ??? I will keep my chin up, just wonder how it ever came about that the insurance company now plays doctor??? I know God has a plan for me, and it

unfolds every day, so tomorrow hopefully we will know and move on from there. I hope you all are having a pain free day, blessings, Marla

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.