Guest guest Posted August 14, 2006 Report Share Posted August 14, 2006 Hi Angie, You say your doc is a sarcoid specialist? Where do you live that you're lucky enough to find a sarc specialist? I'd love to find one here in Dallas/Ft.Worth! I'm so tired, as I'm sure most of us are, of going to a million different docs. Since I have so many different involvements, I have so many different docs. One would be nice. I wish you much luck on taking the Imuran and Humira. I'm waiting patiently myself to see about Remicade. I was recently taken off oral Methotrexate and waiting to see if I'll be put on injection kind or not. If you have luck with Humira let us know. I may ask about that if Remicade is denied by my insurance. As I said...........Best of luck with your new treatment! Hugs from TX, Diane RE: Humira Rose,Yes, I take Imuran with the humira. My doc is aspecialist in sarcoid and he has been running clinicaltrials on remicade and so far the drug has been verysucessful with majority of the patients but has not gotit FDA approved yet. He thought about giving me remicadebut since it is very strong and a high risk of allergicreactions he choose humira. I get a shot every two weeksand a follow-up MRI in three months. He is actuallyabout two hours away from me so humira seemed like thesafest choice. I start it tomorrow. Wish me luckactually prayers would be better. Angie --- Rose <mamadogrose (AT) hotmail (DOT) com> wrote:---------------------------------Angie, we're glad you found us, although I wish we hadsomething else in common. Are the doctors who are goingto administer the Humira pretty experienced with it? I'mjust wondering if you need to take Methotrexate oranother immune suppressant along with the Humira like youdo with the Remicade, to prevent the formation ofantibodies. Did your docs say anything about it? Ithink that Humira is in the same drug class as Remicade. Tracie, do you know?Anyway, Angie, good luck & keep us posted on how thingsare going.Ramblin' RoseModerator---------------------------------From: "cytochic" <tagildow (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: HumiraDate: Sat, 12 Aug 2006 00:29:59 -0000Hi everyone,My name is Angie and I wrote about a week ago about myneurosarc and trying to get humira paid for by my insurance. Well, theyhave agreed to pay 55% and I'm responsible for 45% which is still alot but every little bit helps. It still will cost me $600. a month.Last year, it really helped, so I'm praying it will work this time. I'mstarting to get symptoms like numbness on my face and dizziness. I'm35 years old and have a little boy and a great husband. It scares meto read some of the messages about spouses that have turn their backs.But, I can see how one spouse being sick affects the other spouse,so I pray ours stay strong. Well, I was just reading all of yourmessages and it seems like you have really good friendships on this site.I'm glad I found it. Angie---------------------------------Got something to buy, sell or swap? Try Windows LiveExpo __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2006 Report Share Posted August 14, 2006 Hi Diane, I live in Lancaster,OH and I see a doctor at the University of Cincinnati, Dr. Baughman, at the Interstitial Lung Disease and Sarcoidosis Clinic. It took me 4 years to find him. I sepent a lot of time at OSU and Cleveland Clinic until they finally sent me to him. He is very knowledgeable in this area. He is a god sent. I only have it in my neurosystem and he doesn't see an abundance of them but he has kept me stable so far even though he says if any drastically changes he is going to put me back on prednisone and I don't want that. I gained 40 pounds last time. If you want any info on him, let me know. Angie:) --- Diane Aja dianeaja@...> wrote: > Hi Angie, > You say your doc is a sarcoid specialist? Where do you > live that you're lucky enough to find a sarc > specialist? I'd love to find one here in > Dallas/Ft.Worth! I'm so tired, as I'm sure most of us > are, of going to a million different docs. Since I > have so many different involvements, I have so many > different docs. One would be nice. I wish you much > luck on taking the Imuran and Humira. I'm waiting > patiently myself to see about Remicade. I was recently > taken off oral Methotrexate and waiting to see if I'll > be put on injection kind or not. If you have luck with > Humira let us know. I may ask about that if Remicade > is denied by my insurance. > As I said...........Best of luck with your new > treatment! > Hugs from TX, > Diane > > Humira > Date: Sat, 12 Aug 2006 00:29:59 -0000 > > Hi everyone, > My name is Angie and I wrote about a week ago about > my > neurosarc and > trying to get humira paid for by my insurance. Well, > they > have agreed > to pay 55% and I'm responsible for 45% which is still > a > lot but every > little bit helps. It still will cost me $600. a > month. > Last year, it > really helped, so I'm praying it will work this time. > I'm > starting to > get symptoms like numbness on my face and dizziness. > I'm > 35 years old > and have a little boy and a great husband. It scares > me > to read some > of the messages about spouses that have turn their > backs. > But, I can > see how one spouse being sick affects the other > spouse, > so I pray ours > stay strong. Well, I was just reading all of your > messages and it > seems like you have really good friendships on this > site. > I'm glad I > found it. Angie > > --------------------------------- > Got something to buy, sell or swap? Try Windows Live > Expo > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2006 Report Share Posted August 14, 2006 Hi Diane, I live in Lancaster,OH and I see a doctor at the University of Cincinnati, Dr. Baughman, at the Interstitial Lung Disease and Sarcoidosis Clinic. It took me 4 years to find him. I sepent a lot of time at OSU and Cleveland Clinic until they finally sent me to him. He is very knowledgeable in this area. He is a god sent. I only have it in my neurosystem and he doesn't see an abundance of them but he has kept me stable so far even though he says if any drastically changes he is going to put me back on prednisone and I don't want that. I gained 40 pounds last time. If you want any info on him, let me know. Angie:) --- Diane Aja dianeaja@...> wrote: > Hi Angie, > You say your doc is a sarcoid specialist? Where do you > live that you're lucky enough to find a sarc > specialist? I'd love to find one here in > Dallas/Ft.Worth! I'm so tired, as I'm sure most of us > are, of going to a million different docs. Since I > have so many different involvements, I have so many > different docs. One would be nice. I wish you much > luck on taking the Imuran and Humira. I'm waiting > patiently myself to see about Remicade. I was recently > taken off oral Methotrexate and waiting to see if I'll > be put on injection kind or not. If you have luck with > Humira let us know. I may ask about that if Remicade > is denied by my insurance. > As I said...........Best of luck with your new > treatment! > Hugs from TX, > Diane > > Humira > Date: Sat, 12 Aug 2006 00:29:59 -0000 > > Hi everyone, > My name is Angie and I wrote about a week ago about > my > neurosarc and > trying to get humira paid for by my insurance. Well, > they > have agreed > to pay 55% and I'm responsible for 45% which is still > a > lot but every > little bit helps. It still will cost me $600. a > month. > Last year, it > really helped, so I'm praying it will work this time. > I'm > starting to > get symptoms like numbness on my face and dizziness. > I'm > 35 years old > and have a little boy and a great husband. It scares > me > to read some > of the messages about spouses that have turn their > backs. > But, I can > see how one spouse being sick affects the other > spouse, > so I pray ours > stay strong. Well, I was just reading all of your > messages and it > seems like you have really good friendships on this > site. > I'm glad I > found it. Angie > > --------------------------------- > Got something to buy, sell or swap? Try Windows Live > Expo > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2006 Report Share Posted August 14, 2006 Hi Diane, I live in Lancaster,OH and I see a doctor at the University of Cincinnati, Dr. Baughman, at the Interstitial Lung Disease and Sarcoidosis Clinic. It took me 4 years to find him. I sepent a lot of time at OSU and Cleveland Clinic until they finally sent me to him. He is very knowledgeable in this area. He is a god sent. I only have it in my neurosystem and he doesn't see an abundance of them but he has kept me stable so far even though he says if any drastically changes he is going to put me back on prednisone and I don't want that. I gained 40 pounds last time. If you want any info on him, let me know. Angie:) --- Diane Aja dianeaja@...> wrote: > Hi Angie, > You say your doc is a sarcoid specialist? Where do you > live that you're lucky enough to find a sarc > specialist? I'd love to find one here in > Dallas/Ft.Worth! I'm so tired, as I'm sure most of us > are, of going to a million different docs. Since I > have so many different involvements, I have so many > different docs. One would be nice. I wish you much > luck on taking the Imuran and Humira. I'm waiting > patiently myself to see about Remicade. I was recently > taken off oral Methotrexate and waiting to see if I'll > be put on injection kind or not. If you have luck with > Humira let us know. I may ask about that if Remicade > is denied by my insurance. > As I said...........Best of luck with your new > treatment! > Hugs from TX, > Diane > > Humira > Date: Sat, 12 Aug 2006 00:29:59 -0000 > > Hi everyone, > My name is Angie and I wrote about a week ago about > my > neurosarc and > trying to get humira paid for by my insurance. Well, > they > have agreed > to pay 55% and I'm responsible for 45% which is still > a > lot but every > little bit helps. It still will cost me $600. a > month. > Last year, it > really helped, so I'm praying it will work this time. > I'm > starting to > get symptoms like numbness on my face and dizziness. > I'm > 35 years old > and have a little boy and a great husband. It scares > me > to read some > of the messages about spouses that have turn their > backs. > But, I can > see how one spouse being sick affects the other > spouse, > so I pray ours > stay strong. Well, I was just reading all of your > messages and it > seems like you have really good friendships on this > site. > I'm glad I > found it. Angie > > --------------------------------- > Got something to buy, sell or swap? Try Windows Live > Expo > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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