Guest guest Posted March 14, 2008 Report Share Posted March 14, 2008 Thank you so much for your reply. I have had neuro symptoms for a year now and it seems like over all my condition declines, but it's like a roller coaster, some days I feel like I am getting better (like when I start prednisone again---I hate prednisone though) and then I am back to bad or worse. Is that the way it goes? Just a downward progressive spiral? I am a nurse to. I never dreamed I would end up with something like this. I read it hits healthcare workers frequently. I am weaning off of prednisone again,so I feel rotten. The Plaquenil is helping with the pain, but the fatigue is horrible. The weakness and numbness seem to keep getting worse. They are hesitant to use methotrexate because they also found I have a liver disease that I never heard of before (Alpha 1 anti trypsin deficiency-sp?) that means my liver's not producing the protien needed in my lungs that protect against an immune response (great thing to have in combination with sarcoid huh?). Anyway, I guess the liver makes the protien the wrong shape and it clogs up the liver, because it can't leave the liver and leaves your lungs unprotected, predisposed to severe emphysema at an early age. I just rec'd that dx, so have a lot to learn about it. thanks for your time and info! It is so great to finally have someone to talk to who understands. Thanks so much!!!!!!Marla Bramer wrote: I was dx with Sarcoid almost 13 years ago, NS 5 years ago, I have had just about all your symptoms, right now I am just slowly losing the use of my left side and legs, On Plaquanil, Methotrexate, and many other drugs to treat symptoms, this week I have a hearing with the insurance company to appeal their denial on Remicade which is the drug I know need. I left my job as an RN, Labor and delivery nurse almost 5 years ago, hardly seems possible, I keep my self busy with an in home small business or I would go crazy, or maybe already there. There are many of us here that have been through all this, and much more, this is a wonderful supportive group, with very knowledgeable moderators and we are blessed to have them. Many of them are sick right now, but still check in when they can. you have found a good home here, I hope you find your answers here, and the support you need. Ask away, and whine when needed, we all do. God Bless you, Marla -- Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2008 Report Share Posted March 14, 2008 Thank you so much for your reply. I have had neuro symptoms for a year now and it seems like over all my condition declines, but it's like a roller coaster, some days I feel like I am getting better (like when I start prednisone again---I hate prednisone though) and then I am back to bad or worse. Is that the way it goes? Just a downward progressive spiral? I am a nurse to. I never dreamed I would end up with something like this. I read it hits healthcare workers frequently. I am weaning off of prednisone again,so I feel rotten. The Plaquenil is helping with the pain, but the fatigue is horrible. The weakness and numbness seem to keep getting worse. They are hesitant to use methotrexate because they also found I have a liver disease that I never heard of before (Alpha 1 anti trypsin deficiency-sp?) that means my liver's not producing the protien needed in my lungs that protect against an immune response (great thing to have in combination with sarcoid huh?). Anyway, I guess the liver makes the protien the wrong shape and it clogs up the liver, because it can't leave the liver and leaves your lungs unprotected, predisposed to severe emphysema at an early age. I just rec'd that dx, so have a lot to learn about it. thanks for your time and info! It is so great to finally have someone to talk to who understands. Thanks so much!!!!!!Marla Bramer wrote: I was dx with Sarcoid almost 13 years ago, NS 5 years ago, I have had just about all your symptoms, right now I am just slowly losing the use of my left side and legs, On Plaquanil, Methotrexate, and many other drugs to treat symptoms, this week I have a hearing with the insurance company to appeal their denial on Remicade which is the drug I know need. I left my job as an RN, Labor and delivery nurse almost 5 years ago, hardly seems possible, I keep my self busy with an in home small business or I would go crazy, or maybe already there. There are many of us here that have been through all this, and much more, this is a wonderful supportive group, with very knowledgeable moderators and we are blessed to have them. Many of them are sick right now, but still check in when they can. you have found a good home here, I hope you find your answers here, and the support you need. Ask away, and whine when needed, we all do. God Bless you, Marla -- Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2008 Report Share Posted March 14, 2008 Cathy, Welcome to the group I'm wish you didn't need to learn about this disease. ... I see where they have started you on Plaquenil--this is good. I know it helped me with the brain fog part, and the systemic body pain. It also helps with my lung sarc. It's interesting about the Alpha 1 trypshin or whatever it's called. The post I sent on to the group from the Arthritis Foundation addresses that issue in asthma patients. Methotrexate can be given by injection - Subq. It totally bypasses the liver that way, and still works well. Also-- whenever liver health is an issue---GET YOURSELF ON MILK THISTLE CAPSULES! It is a natural liver detox, and works wonders. I found out about it a few years ago from a friend that had had childhood Hodgkins Lymphoma back in the 60's. She was one of the first 8 kids that got radiation and they used such high doses-- that even tho the Hodgkins was cured-- the secondary scarring of her organs, heart liver lungs esophagus, stomach-- generally killed all these kids as young adults. At the age of 49-- she was the oldest survivor of Hodgkins from that era. She ended up developing such scarring around the peri-cardial sac around her heart-- that they had to remove it when she was 46. The docs at Stanford told her 2 days, 2 weeks, 2 months-- tops. She lived another 3 yrs. Her liver was in serious shape, and had developed cancer-- her oncologist got her on Milk Thistle, and when she died, her liver was in wonderful condition-- the cancer had gone to her bones... He did tell her that cirrhosis and liver cancer along with Hepatitis all respond well to Milk Thistle. I know that I use it and even on MTX, Plaquenil and Remicade-- my liver enzymes are all normal now! You asked if this is a slow progression-- fatigue, brain fog, extremity weakness-- it seems to progress that way in many of us. What I have noticed since I started on the Remicade over 15 months ago is that my bone pain, the joint and ligament pain, the brain fog-- are all much better. I have started having problems with my lungs and heart lately- and am developing more pulmonary fibrosis with pulmonary hypertension-- so it isn't stopping that part. I don't know what the answer is -- and after living with this for the last 17 yrs--- I'm not frantically searching -- The exhaustion is worse-- but I suspect it's the PPH more than the sarc. (Actually it's Secondary Pulm Hypertension._ One thing that is becoming apparent in the studies is that somehow we came into contact with a virus or bacterial infection that turned on our immune system, and now our bodies can't clear out the TNF-b cells (we produce too many) and they build on the other immune cells forming the granulomas. This is why they are looking at TNF-B blockers-- the "Biologicals" BRM's. Biological Response Modifiers. Here is a great site to check out for explanation of the DMARDS and BRMS--www.arthritis.org. Use a 2007 or 2006 Prescription drug issue and you will be amazed at the choices we have. I do hope this helps, Sincerely, Tracie NSCo-owner/moderator Re: NS dx Thank you so much for your reply. I have had neuro symptoms for a year now and it seems like over all my condition declines, but it's like a roller coaster, some days I feel like I am getting better (like when I start prednisone again---I hate prednisone though) and then I am back to bad or worse. Is that the way it goes? Just a downward progressive spiral? I am a nurse to. I never dreamed I would end up with something like this. I read it hits healthcare workers frequently. I am weaning off of prednisone again,so I feel rotten. The Plaquenil is helping with the pain, but the fatigue is horrible. The weakness and numbness seem to keep getting worse. They are hesitant to use methotrexate because they also found I have a liver disease that I never heard of before (Alpha 1 anti trypsin deficiency-sp? ) that means my liver's not producing the protien needed in my lungs that protect against an immune response (great thing to have in combination with sarcoid huh?). Anyway, I guess the liver makes the protien the wrong shape and it clogs up the liver, because it can't leave the liver and leaves your lungs unprotected, predisposed to severe emphysema at an early age. I just rec'd that dx, so have a lot to learn about it. thanks for your time and info! It is so great to finally have someone to talk to who understands. Thanks so much!!!!!!Marla Bramer <mebramer (AT) gmail (DOT) com> wrote: I was dx with Sarcoid almost 13 years ago, NS 5 years ago, I have had just about all your symptoms, right now I am just slowly losing the use of my left side and legs, On Plaquanil, Methotrexate, and many other drugs to treat symptoms, this week I have a hearing with the insurance company to appeal their denial on Remicade which is the drug I know need. I left my job as an RN, Labor and delivery nurse almost 5 years ago, hardly seems possible, I keep my self busy with an in home small business or I would go crazy, or maybe already there. There are many of us here that have been through all this, and much more, this is a wonderful supportive group, with very knowledgeable moderators and we are blessed to have them. Many of them are sick right now, but still check in when they can. you have found a good home here, I hope you find your answers here, and the support you need. Ask away, and whine when needed, we all do. God Bless you, Marla -- Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2008 Report Share Posted March 14, 2008 Cathy, Welcome to the group I'm wish you didn't need to learn about this disease. ... I see where they have started you on Plaquenil--this is good. I know it helped me with the brain fog part, and the systemic body pain. It also helps with my lung sarc. It's interesting about the Alpha 1 trypshin or whatever it's called. The post I sent on to the group from the Arthritis Foundation addresses that issue in asthma patients. Methotrexate can be given by injection - Subq. It totally bypasses the liver that way, and still works well. Also-- whenever liver health is an issue---GET YOURSELF ON MILK THISTLE CAPSULES! It is a natural liver detox, and works wonders. I found out about it a few years ago from a friend that had had childhood Hodgkins Lymphoma back in the 60's. She was one of the first 8 kids that got radiation and they used such high doses-- that even tho the Hodgkins was cured-- the secondary scarring of her organs, heart liver lungs esophagus, stomach-- generally killed all these kids as young adults. At the age of 49-- she was the oldest survivor of Hodgkins from that era. She ended up developing such scarring around the peri-cardial sac around her heart-- that they had to remove it when she was 46. The docs at Stanford told her 2 days, 2 weeks, 2 months-- tops. She lived another 3 yrs. Her liver was in serious shape, and had developed cancer-- her oncologist got her on Milk Thistle, and when she died, her liver was in wonderful condition-- the cancer had gone to her bones... He did tell her that cirrhosis and liver cancer along with Hepatitis all respond well to Milk Thistle. I know that I use it and even on MTX, Plaquenil and Remicade-- my liver enzymes are all normal now! You asked if this is a slow progression-- fatigue, brain fog, extremity weakness-- it seems to progress that way in many of us. What I have noticed since I started on the Remicade over 15 months ago is that my bone pain, the joint and ligament pain, the brain fog-- are all much better. I have started having problems with my lungs and heart lately- and am developing more pulmonary fibrosis with pulmonary hypertension-- so it isn't stopping that part. I don't know what the answer is -- and after living with this for the last 17 yrs--- I'm not frantically searching -- The exhaustion is worse-- but I suspect it's the PPH more than the sarc. (Actually it's Secondary Pulm Hypertension._ One thing that is becoming apparent in the studies is that somehow we came into contact with a virus or bacterial infection that turned on our immune system, and now our bodies can't clear out the TNF-b cells (we produce too many) and they build on the other immune cells forming the granulomas. This is why they are looking at TNF-B blockers-- the "Biologicals" BRM's. Biological Response Modifiers. Here is a great site to check out for explanation of the DMARDS and BRMS--www.arthritis.org. Use a 2007 or 2006 Prescription drug issue and you will be amazed at the choices we have. I do hope this helps, Sincerely, Tracie NSCo-owner/moderator Re: NS dx Thank you so much for your reply. I have had neuro symptoms for a year now and it seems like over all my condition declines, but it's like a roller coaster, some days I feel like I am getting better (like when I start prednisone again---I hate prednisone though) and then I am back to bad or worse. Is that the way it goes? Just a downward progressive spiral? I am a nurse to. I never dreamed I would end up with something like this. I read it hits healthcare workers frequently. I am weaning off of prednisone again,so I feel rotten. The Plaquenil is helping with the pain, but the fatigue is horrible. The weakness and numbness seem to keep getting worse. They are hesitant to use methotrexate because they also found I have a liver disease that I never heard of before (Alpha 1 anti trypsin deficiency-sp? ) that means my liver's not producing the protien needed in my lungs that protect against an immune response (great thing to have in combination with sarcoid huh?). Anyway, I guess the liver makes the protien the wrong shape and it clogs up the liver, because it can't leave the liver and leaves your lungs unprotected, predisposed to severe emphysema at an early age. I just rec'd that dx, so have a lot to learn about it. thanks for your time and info! It is so great to finally have someone to talk to who understands. Thanks so much!!!!!!Marla Bramer <mebramer (AT) gmail (DOT) com> wrote: I was dx with Sarcoid almost 13 years ago, NS 5 years ago, I have had just about all your symptoms, right now I am just slowly losing the use of my left side and legs, On Plaquanil, Methotrexate, and many other drugs to treat symptoms, this week I have a hearing with the insurance company to appeal their denial on Remicade which is the drug I know need. I left my job as an RN, Labor and delivery nurse almost 5 years ago, hardly seems possible, I keep my self busy with an in home small business or I would go crazy, or maybe already there. There are many of us here that have been through all this, and much more, this is a wonderful supportive group, with very knowledgeable moderators and we are blessed to have them. Many of them are sick right now, but still check in when they can. you have found a good home here, I hope you find your answers here, and the support you need. Ask away, and whine when needed, we all do. God Bless you, Marla -- Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2008 Report Share Posted March 15, 2008 Tracie, Thank you so much! How much of the Milk Thistle Capsules should I take? Do you get them at a health food store? That's really good to know that the sq methotrexate bypasses the liver. Last time I was in the hospital my heart rate would drop down to 40 at night, even if I was awake. They said that could suggest heart involvement with sarcoid. They did an echo and didn't see any nodules. My EF was only 53% though. How did you know it got to your heart? What symptoms did you have? Thanks so much! Cathytracie feldhaus wrote: Cathy, Welcome to the group I'm wish you didn't need to learn about this disease. ... I see where they have started you on Plaquenil--this is good. I know it helped me with the brain fog part, and the systemic body pain. It also helps with my lung sarc. It's interesting about the Alpha 1 trypshin or whatever it's called. The post I sent on to the group from the Arthritis Foundation addresses that issue in asthma patients. Methotrexate can be given by injection - Subq. It totally bypasses the liver that way, and still works well. Also-- whenever liver health is an issue---GET YOURSELF ON MILK THISTLE CAPSULES! It is a natural liver detox, and works wonders. I found out about it a few years ago from a friend that had had childhood Hodgkins Lymphoma back in the 60's. She was one of the first 8 kids that got radiation and they used such high doses-- that even tho the Hodgkins was cured-- the secondary scarring of her organs, heart liver lungs esophagus, stomach-- generally killed all these kids as young adults. At the age of 49-- she was the oldest survivor of Hodgkins from that era. She ended up developing such scarring around the peri-cardial sac around her heart-- that they had to remove it when she was 46. The docs at Stanford told her 2 days, 2 weeks, 2 months-- tops. She lived another 3 yrs. Her liver was in serious shape, and had developed cancer-- her oncologist got her on Milk Thistle, and when she died, her liver was in wonderful condition-- the cancer had gone to her bones... He did tell her that cirrhosis and liver cancer along with Hepatitis all respond well to Milk Thistle. I know that I use it and even on MTX, Plaquenil and Remicade-- my liver enzymes are all normal now! You asked if this is a slow progression-- fatigue, brain fog, extremity weakness-- it seems to progress that way in many of us. What I have noticed since I started on the Remicade over 15 months ago is that my bone pain, the joint and ligament pain, the brain fog-- are all much better. I have started having problems with my lungs and heart lately- and am developing more pulmonary fibrosis with pulmonary hypertension-- so it isn't stopping that part. I don't know what the answer is -- and after living with this for the last 17 yrs--- I'm not frantically searching -- The exhaustion is worse-- but I suspect it's the PPH more than the sarc. (Actually it's Secondary Pulm Hypertension._ One thing that is becoming apparent in the studies is that somehow we came into contact with a virus or bacterial infection that turned on our immune system, and now our bodies can't clear out the TNF-b cells (we produce too many) and they build on the other immune cells forming the granulomas. This is why they are looking at TNF-B blockers-- the "Biologicals" BRM's. Biological Response Modifiers. Here is a great site to check out for explanation of the DMARDS and BRMS--www.arthritis.org. Use a 2007 or 2006 Prescription drug issue and you will be amazed at the choices we have. I do hope this helps, Sincerely, Tracie NSCo-owner/moderator Re: NS dx Thank you so much for your reply. I have had neuro symptoms for a year now and it seems like over all my condition declines, but it's like a roller coaster, some days I feel like I am getting better (like when I start prednisone again---I hate prednisone though) and then I am back to bad or worse. Is that the way it goes? Just a downward progressive spiral? I am a nurse to. I never dreamed I would end up with something like this. I read it hits healthcare workers frequently. I am weaning off of prednisone again,so I feel rotten. The Plaquenil is helping with the pain, but the fatigue is horrible. The weakness and numbness seem to keep getting worse. They are hesitant to use methotrexate because they also found I have a liver disease that I never heard of before (Alpha 1 anti trypsin deficiency-sp? ) that means my liver's not producing the protien needed in my lungs that protect against an immune response (great thing to have in combination with sarcoid huh?). Anyway, I guess the liver makes the protien the wrong shape and it clogs up the liver, because it can't leave the liver and leaves your lungs unprotected, predisposed to severe emphysema at an early age. I just rec'd that dx, so have a lot to learn about it. thanks for your time and info! It is so great to finally have someone to talk to who understands. Thanks so much!!!!!!Marla Bramer <mebramer (AT) gmail (DOT) com> wrote: I was dx with Sarcoid almost 13 years ago, NS 5 years ago, I have had just about all your symptoms, right now I am just slowly losing the use of my left side and legs, On Plaquanil, Methotrexate, and many other drugs to treat symptoms, this week I have a hearing with the insurance company to appeal their denial on Remicade which is the drug I know need. I left my job as an RN, Labor and delivery nurse almost 5 years ago, hardly seems possible, I keep my self busy with an in home small business or I would go crazy, or maybe already there. There are many of us here that have been through all this, and much more, this is a wonderful supportive group, with very knowledgeable moderators and we are blessed to have them. Many of them are sick right now, but still check in when they can. you have found a good home here, I hope you find your answers here, and the support you need. Ask away, and whine when needed, we all do. God Bless you, Marla -- Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2008 Report Share Posted March 15, 2008 Tracie, Thank you so much! How much of the Milk Thistle Capsules should I take? Do you get them at a health food store? That's really good to know that the sq methotrexate bypasses the liver. Last time I was in the hospital my heart rate would drop down to 40 at night, even if I was awake. They said that could suggest heart involvement with sarcoid. They did an echo and didn't see any nodules. My EF was only 53% though. How did you know it got to your heart? What symptoms did you have? Thanks so much! Cathytracie feldhaus wrote: Cathy, Welcome to the group I'm wish you didn't need to learn about this disease. ... I see where they have started you on Plaquenil--this is good. I know it helped me with the brain fog part, and the systemic body pain. It also helps with my lung sarc. It's interesting about the Alpha 1 trypshin or whatever it's called. The post I sent on to the group from the Arthritis Foundation addresses that issue in asthma patients. Methotrexate can be given by injection - Subq. It totally bypasses the liver that way, and still works well. Also-- whenever liver health is an issue---GET YOURSELF ON MILK THISTLE CAPSULES! It is a natural liver detox, and works wonders. I found out about it a few years ago from a friend that had had childhood Hodgkins Lymphoma back in the 60's. She was one of the first 8 kids that got radiation and they used such high doses-- that even tho the Hodgkins was cured-- the secondary scarring of her organs, heart liver lungs esophagus, stomach-- generally killed all these kids as young adults. At the age of 49-- she was the oldest survivor of Hodgkins from that era. She ended up developing such scarring around the peri-cardial sac around her heart-- that they had to remove it when she was 46. The docs at Stanford told her 2 days, 2 weeks, 2 months-- tops. She lived another 3 yrs. Her liver was in serious shape, and had developed cancer-- her oncologist got her on Milk Thistle, and when she died, her liver was in wonderful condition-- the cancer had gone to her bones... He did tell her that cirrhosis and liver cancer along with Hepatitis all respond well to Milk Thistle. I know that I use it and even on MTX, Plaquenil and Remicade-- my liver enzymes are all normal now! You asked if this is a slow progression-- fatigue, brain fog, extremity weakness-- it seems to progress that way in many of us. What I have noticed since I started on the Remicade over 15 months ago is that my bone pain, the joint and ligament pain, the brain fog-- are all much better. I have started having problems with my lungs and heart lately- and am developing more pulmonary fibrosis with pulmonary hypertension-- so it isn't stopping that part. I don't know what the answer is -- and after living with this for the last 17 yrs--- I'm not frantically searching -- The exhaustion is worse-- but I suspect it's the PPH more than the sarc. (Actually it's Secondary Pulm Hypertension._ One thing that is becoming apparent in the studies is that somehow we came into contact with a virus or bacterial infection that turned on our immune system, and now our bodies can't clear out the TNF-b cells (we produce too many) and they build on the other immune cells forming the granulomas. This is why they are looking at TNF-B blockers-- the "Biologicals" BRM's. Biological Response Modifiers. Here is a great site to check out for explanation of the DMARDS and BRMS--www.arthritis.org. Use a 2007 or 2006 Prescription drug issue and you will be amazed at the choices we have. I do hope this helps, Sincerely, Tracie NSCo-owner/moderator Re: NS dx Thank you so much for your reply. I have had neuro symptoms for a year now and it seems like over all my condition declines, but it's like a roller coaster, some days I feel like I am getting better (like when I start prednisone again---I hate prednisone though) and then I am back to bad or worse. Is that the way it goes? Just a downward progressive spiral? I am a nurse to. I never dreamed I would end up with something like this. I read it hits healthcare workers frequently. I am weaning off of prednisone again,so I feel rotten. The Plaquenil is helping with the pain, but the fatigue is horrible. The weakness and numbness seem to keep getting worse. They are hesitant to use methotrexate because they also found I have a liver disease that I never heard of before (Alpha 1 anti trypsin deficiency-sp? ) that means my liver's not producing the protien needed in my lungs that protect against an immune response (great thing to have in combination with sarcoid huh?). Anyway, I guess the liver makes the protien the wrong shape and it clogs up the liver, because it can't leave the liver and leaves your lungs unprotected, predisposed to severe emphysema at an early age. I just rec'd that dx, so have a lot to learn about it. thanks for your time and info! It is so great to finally have someone to talk to who understands. Thanks so much!!!!!!Marla Bramer <mebramer (AT) gmail (DOT) com> wrote: I was dx with Sarcoid almost 13 years ago, NS 5 years ago, I have had just about all your symptoms, right now I am just slowly losing the use of my left side and legs, On Plaquanil, Methotrexate, and many other drugs to treat symptoms, this week I have a hearing with the insurance company to appeal their denial on Remicade which is the drug I know need. I left my job as an RN, Labor and delivery nurse almost 5 years ago, hardly seems possible, I keep my self busy with an in home small business or I would go crazy, or maybe already there. There are many of us here that have been through all this, and much more, this is a wonderful supportive group, with very knowledgeable moderators and we are blessed to have them. Many of them are sick right now, but still check in when they can. you have found a good home here, I hope you find your answers here, and the support you need. Ask away, and whine when needed, we all do. God Bless you, Marla -- Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 I flipped back and too. I have recorded heartrates of as low as 13 and as high as 258. I showed bundle branch block, sick sinus syndrome and brady-tachy syndrome. Lots of PVC's. I don't have clogged arteries, and am just short circuited. When they did the arteriogram the cardiologist told me and my mom it was the @$*! sarc. My heart can not maintain it's rate without a pacer. I would be sitting at work before the pacer and without warning I would black out. The only slight notice I had it was coming was I would feel really tired, next thing I knew I would look up and there would be of all things z's, rows and rows on my monitor. I had to quit driving right before I got my pacer because I was doing 77mph on I-10, was passing a contruction truck and the next thing I know I'm in the woods. After I wrecked my car they decided they might better put in a pacer. Connie-FL Cathy Borden wrote: Tracie, Thank you so much! How much of the Milk Thistle Capsules should I take? Do you get them at a health food store? That's really good to know that the sq methotrexate bypasses the liver. Last time I was in the hospital my heart rate would drop down to 40 at night, even if I was awake. They said that could suggest heart involvement with sarcoid. They did an echo and didn't see any nodules. My EF was only 53% though. How did you know it got to your heart? What symptoms did you have? Thanks so much! Cathytracie feldhaus <tiodaat2001 (AT) yahoo (DOT) com> wrote: Cathy, Welcome to the group I'm wish you didn't need to learn about this disease. ... I see where they have started you on Plaquenil--this is good. I know it helped me with the brain fog part, and the systemic body pain. It also helps with my lung sarc. It's interesting about the Alpha 1 trypshin or whatever it's called. The post I sent on to the group from the Arthritis Foundation addresses that issue in asthma patients. Methotrexate can be given by injection - Subq. It totally bypasses the liver that way, and still works well. Also-- whenever liver health is an issue---GET YOURSELF ON MILK THISTLE CAPSULES! It is a natural liver detox, and works wonders. I found out about it a few years ago from a friend that had had childhood Hodgkins Lymphoma back in the 60's. She was one of the first 8 kids that got radiation and they used such high doses-- that even tho the Hodgkins was cured-- the secondary scarring of her organs, heart liver lungs esophagus, stomach-- generally killed all these kids as young adults. At the age of 49-- she was the oldest survivor of Hodgkins from that era. She ended up developing such scarring around the peri-cardial sac around her heart-- that they had to remove it when she was 46. The docs at Stanford told her 2 days, 2 weeks, 2 months-- tops. She lived another 3 yrs. Her liver was in serious shape, and had developed cancer-- her oncologist got her on Milk Thistle, and when she died, her liver was in wonderful condition-- the cancer had gone to her bones... He did tell her that cirrhosis and liver cancer along with Hepatitis all respond well to Milk Thistle. I know that I use it and even on MTX, Plaquenil and Remicade-- my liver enzymes are all normal now! You asked if this is a slow progression-- fatigue, brain fog, extremity weakness-- it seems to progress that way in many of us. What I have noticed since I started on the Remicade over 15 months ago is that my bone pain, the joint and ligament pain, the brain fog-- are all much better. I have started having problems with my lungs and heart lately- and am developing more pulmonary fibrosis with pulmonary hypertension-- so it isn't stopping that part. I don't know what the answer is -- and after living with this for the last 17 yrs--- I'm not frantically searching -- The exhaustion is worse-- but I suspect it's the PPH more than the sarc. (Actually it's Secondary Pulm Hypertension._ One thing that is becoming apparent in the studies is that somehow we came into contact with a virus or bacterial infection that turned on our immune system, and now our bodies can't clear out the TNF-b cells (we produce too many) and they build on the other immune cells forming the granulomas. This is why they are looking at TNF-B blockers-- the "Biologicals" BRM's. Biological Response Modifiers. Here is a great site to check out for explanation of the DMARDS and BRMS--www.arthritis.org. Use a 2007 or 2006 Prescription drug issue and you will be amazed at the choices we have. I do hope this helps, Sincerely, Tracie NSCo-owner/moderator Re: NS dx Thank you so much for your reply. I have had neuro symptoms for a year now and it seems like over all my condition declines, but it's like a roller coaster, some days I feel like I am getting better (like when I start prednisone again---I hate prednisone though) and then I am back to bad or worse. Is that the way it goes? Just a downward progressive spiral? I am a nurse to. I never dreamed I would end up with something like this. I read it hits healthcare workers frequently. I am weaning off of prednisone again,so I feel rotten. The Plaquenil is helping with the pain, but the fatigue is horrible. The weakness and numbness seem to keep getting worse. They are hesitant to use methotrexate because they also found I have a liver disease that I never heard of before (Alpha 1 anti trypsin deficiency-sp? ) that means my liver's not producing the protien needed in my lungs that protect against an immune response (great thing to have in combination with sarcoid huh?). Anyway, I guess the liver makes the protien the wrong shape and it clogs up the liver, because it can't leave the liver and leaves your lungs unprotected, predisposed to severe emphysema at an early age. I just rec'd that dx, so have a lot to learn about it. thanks for your time and info! It is so great to finally have someone to talk to who understands. Thanks so much!!!!!!Marla Bramer <mebramer (AT) gmail (DOT) com> wrote: I was dx with Sarcoid almost 13 years ago, NS 5 years ago, I have had just about all your symptoms, right now I am just slowly losing the use of my left side and legs, On Plaquanil, Methotrexate, and many other drugs to treat symptoms, this week I have a hearing with the insurance company to appeal their denial on Remicade which is the drug I know need. I left my job as an RN, Labor and delivery nurse almost 5 years ago, hardly seems possible, I keep my self busy with an in home small business or I would go crazy, or maybe already there. There are many of us here that have been through all this, and much more, this is a wonderful supportive group, with very knowledgeable moderators and we are blessed to have them. Many of them are sick right now, but still check in when they can. you have found a good home here, I hope you find your answers here, and the support you need. Ask away, and whine when needed, we all do. God Bless you, Marla -- Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Looking for last minute shopping deals? Find them fast with Yahoo! Search. You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 I flipped back and too. I have recorded heartrates of as low as 13 and as high as 258. I showed bundle branch block, sick sinus syndrome and brady-tachy syndrome. Lots of PVC's. I don't have clogged arteries, and am just short circuited. When they did the arteriogram the cardiologist told me and my mom it was the @$*! sarc. My heart can not maintain it's rate without a pacer. I would be sitting at work before the pacer and without warning I would black out. The only slight notice I had it was coming was I would feel really tired, next thing I knew I would look up and there would be of all things z's, rows and rows on my monitor. I had to quit driving right before I got my pacer because I was doing 77mph on I-10, was passing a contruction truck and the next thing I know I'm in the woods. After I wrecked my car they decided they might better put in a pacer. Connie-FL Cathy Borden wrote: Tracie, Thank you so much! How much of the Milk Thistle Capsules should I take? Do you get them at a health food store? That's really good to know that the sq methotrexate bypasses the liver. Last time I was in the hospital my heart rate would drop down to 40 at night, even if I was awake. They said that could suggest heart involvement with sarcoid. They did an echo and didn't see any nodules. My EF was only 53% though. How did you know it got to your heart? What symptoms did you have? Thanks so much! Cathytracie feldhaus <tiodaat2001 (AT) yahoo (DOT) com> wrote: Cathy, Welcome to the group I'm wish you didn't need to learn about this disease. ... I see where they have started you on Plaquenil--this is good. I know it helped me with the brain fog part, and the systemic body pain. It also helps with my lung sarc. It's interesting about the Alpha 1 trypshin or whatever it's called. The post I sent on to the group from the Arthritis Foundation addresses that issue in asthma patients. Methotrexate can be given by injection - Subq. It totally bypasses the liver that way, and still works well. Also-- whenever liver health is an issue---GET YOURSELF ON MILK THISTLE CAPSULES! It is a natural liver detox, and works wonders. I found out about it a few years ago from a friend that had had childhood Hodgkins Lymphoma back in the 60's. She was one of the first 8 kids that got radiation and they used such high doses-- that even tho the Hodgkins was cured-- the secondary scarring of her organs, heart liver lungs esophagus, stomach-- generally killed all these kids as young adults. At the age of 49-- she was the oldest survivor of Hodgkins from that era. She ended up developing such scarring around the peri-cardial sac around her heart-- that they had to remove it when she was 46. The docs at Stanford told her 2 days, 2 weeks, 2 months-- tops. She lived another 3 yrs. Her liver was in serious shape, and had developed cancer-- her oncologist got her on Milk Thistle, and when she died, her liver was in wonderful condition-- the cancer had gone to her bones... He did tell her that cirrhosis and liver cancer along with Hepatitis all respond well to Milk Thistle. I know that I use it and even on MTX, Plaquenil and Remicade-- my liver enzymes are all normal now! You asked if this is a slow progression-- fatigue, brain fog, extremity weakness-- it seems to progress that way in many of us. What I have noticed since I started on the Remicade over 15 months ago is that my bone pain, the joint and ligament pain, the brain fog-- are all much better. I have started having problems with my lungs and heart lately- and am developing more pulmonary fibrosis with pulmonary hypertension-- so it isn't stopping that part. I don't know what the answer is -- and after living with this for the last 17 yrs--- I'm not frantically searching -- The exhaustion is worse-- but I suspect it's the PPH more than the sarc. (Actually it's Secondary Pulm Hypertension._ One thing that is becoming apparent in the studies is that somehow we came into contact with a virus or bacterial infection that turned on our immune system, and now our bodies can't clear out the TNF-b cells (we produce too many) and they build on the other immune cells forming the granulomas. This is why they are looking at TNF-B blockers-- the "Biologicals" BRM's. Biological Response Modifiers. Here is a great site to check out for explanation of the DMARDS and BRMS--www.arthritis.org. Use a 2007 or 2006 Prescription drug issue and you will be amazed at the choices we have. I do hope this helps, Sincerely, Tracie NSCo-owner/moderator Re: NS dx Thank you so much for your reply. I have had neuro symptoms for a year now and it seems like over all my condition declines, but it's like a roller coaster, some days I feel like I am getting better (like when I start prednisone again---I hate prednisone though) and then I am back to bad or worse. Is that the way it goes? Just a downward progressive spiral? I am a nurse to. I never dreamed I would end up with something like this. I read it hits healthcare workers frequently. I am weaning off of prednisone again,so I feel rotten. The Plaquenil is helping with the pain, but the fatigue is horrible. The weakness and numbness seem to keep getting worse. They are hesitant to use methotrexate because they also found I have a liver disease that I never heard of before (Alpha 1 anti trypsin deficiency-sp? ) that means my liver's not producing the protien needed in my lungs that protect against an immune response (great thing to have in combination with sarcoid huh?). Anyway, I guess the liver makes the protien the wrong shape and it clogs up the liver, because it can't leave the liver and leaves your lungs unprotected, predisposed to severe emphysema at an early age. I just rec'd that dx, so have a lot to learn about it. thanks for your time and info! It is so great to finally have someone to talk to who understands. Thanks so much!!!!!!Marla Bramer <mebramer (AT) gmail (DOT) com> wrote: I was dx with Sarcoid almost 13 years ago, NS 5 years ago, I have had just about all your symptoms, right now I am just slowly losing the use of my left side and legs, On Plaquanil, Methotrexate, and many other drugs to treat symptoms, this week I have a hearing with the insurance company to appeal their denial on Remicade which is the drug I know need. I left my job as an RN, Labor and delivery nurse almost 5 years ago, hardly seems possible, I keep my self busy with an in home small business or I would go crazy, or maybe already there. There are many of us here that have been through all this, and much more, this is a wonderful supportive group, with very knowledgeable moderators and we are blessed to have them. Many of them are sick right now, but still check in when they can. you have found a good home here, I hope you find your answers here, and the support you need. Ask away, and whine when needed, we all do. God Bless you, Marla -- Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Looking for last minute shopping deals? Find them fast with Yahoo! Search. You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. Quote Link to comment Share on other sites More sharing options...
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