Guest guest Posted April 12, 2008 Report Share Posted April 12, 2008 Marla, Remember all things in His time. I'd call the company who makes Remicade and see what they tell you to do. There's got to be a doc out there who is in this for the patient and not the money. I will pray that God guides you to this person. Maybe this is just a step that God is doing to lead you to just the right person to give this to you. Keep the faith, girl. My prayers are with you. hugsMarla Bramer wrote: Well I didn't get the Remicade, we were told by our doctor, and my research that a dose would be between 1600-2300, so we were prepared to pay what we needed as Insurance still denied, well we got there, I told the nurse that we were self pay and she asked if I knew the medication was $16,000, for just the drug not the other $500 or so for the hospital, I even called our local pharmacist and he said there cost was $845 a vial, I would need 3, OK do the the math, that comes to 2535, a little more then we thought, but over $13000 more I don't think so, so the hospital is taking quite a profit on the drugs. Anyway, my doctor was blown out of the water too. I guess it might be possible to get this at a Rheumatalogist office in town?? so anyone paying that for Remicade please let me know. So here we are at the beginning again, well I fought for Methotrexate until I got it, so I guess I have to keep on fighting. I wish you all a very blessed weekend. Marla -- 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV). __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2008 Report Share Posted April 12, 2008 Marla, Remember all things in His time. I'd call the company who makes Remicade and see what they tell you to do. There's got to be a doc out there who is in this for the patient and not the money. I will pray that God guides you to this person. Maybe this is just a step that God is doing to lead you to just the right person to give this to you. Keep the faith, girl. My prayers are with you. hugsMarla Bramer wrote: Well I didn't get the Remicade, we were told by our doctor, and my research that a dose would be between 1600-2300, so we were prepared to pay what we needed as Insurance still denied, well we got there, I told the nurse that we were self pay and she asked if I knew the medication was $16,000, for just the drug not the other $500 or so for the hospital, I even called our local pharmacist and he said there cost was $845 a vial, I would need 3, OK do the the math, that comes to 2535, a little more then we thought, but over $13000 more I don't think so, so the hospital is taking quite a profit on the drugs. Anyway, my doctor was blown out of the water too. I guess it might be possible to get this at a Rheumatalogist office in town?? so anyone paying that for Remicade please let me know. So here we are at the beginning again, well I fought for Methotrexate until I got it, so I guess I have to keep on fighting. I wish you all a very blessed weekend. Marla -- 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV). __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2008 Report Share Posted April 12, 2008 thanks , I know there is a reason for this yet another delay, so I am trying hard to what on his will not mine. thank you for the hugs and prayers, Marla Marla, Remember all things in His time. I'd call the company who makes Remicade and see what they tell you to do. There's got to be a doc out there who is in this for the patient and not the money. I will pray that God guides you to this person. Maybe this is just a step that God is doing to lead you to just the right person to give this to you. Keep the faith, girl. My prayers are with you. hugs Marla Bramer wrote: Well I didn't get the Remicade, we were told by our doctor, and my research that a dose would be between 1600-2300, so we were prepared to pay what we needed as Insurance still denied, well we got there, I told the nurse that we were self pay and she asked if I knew the medication was $16,000, for just the drug not the other $500 or so for the hospital, I even called our local pharmacist and he said there cost was $845 a vial, I would need 3, OK do the the math, that comes to 2535, a little more then we thought, but over $13000 more I don't think so, so the hospital is taking quite a profit on the drugs. Anyway, my doctor was blown out of the water too. I guess it might be possible to get this at a Rheumatalogist office in town?? so anyone paying that for Remicade please let me know. So here we are at the beginning again, well I fought for Methotrexate until I got it, so I guess I have to keep on fighting. I wish you all a very blessed weekend. Marla -- 29:11, For I know the plans I have for you, " declares the Lord, " plans to prosper you and not to harm you, plans to give you hope and a future. " If anyone would come after Me, he must deny himself " ( 16:24 NIV). __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2008 Report Share Posted April 12, 2008 thanks , I know there is a reason for this yet another delay, so I am trying hard to what on his will not mine. thank you for the hugs and prayers, Marla Marla, Remember all things in His time. I'd call the company who makes Remicade and see what they tell you to do. There's got to be a doc out there who is in this for the patient and not the money. I will pray that God guides you to this person. Maybe this is just a step that God is doing to lead you to just the right person to give this to you. Keep the faith, girl. My prayers are with you. hugs Marla Bramer wrote: Well I didn't get the Remicade, we were told by our doctor, and my research that a dose would be between 1600-2300, so we were prepared to pay what we needed as Insurance still denied, well we got there, I told the nurse that we were self pay and she asked if I knew the medication was $16,000, for just the drug not the other $500 or so for the hospital, I even called our local pharmacist and he said there cost was $845 a vial, I would need 3, OK do the the math, that comes to 2535, a little more then we thought, but over $13000 more I don't think so, so the hospital is taking quite a profit on the drugs. Anyway, my doctor was blown out of the water too. I guess it might be possible to get this at a Rheumatalogist office in town?? so anyone paying that for Remicade please let me know. So here we are at the beginning again, well I fought for Methotrexate until I got it, so I guess I have to keep on fighting. I wish you all a very blessed weekend. Marla -- 29:11, For I know the plans I have for you, " declares the Lord, " plans to prosper you and not to harm you, plans to give you hope and a future. " If anyone would come after Me, he must deny himself " ( 16:24 NIV). __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 Marla, I've been thinking on this one since Friday night, and here is where my mind went. Call the Remicade Hotline or go to their site: www.remicade.com If you have questions or concerns, or if you need additional information related to medical coverage for REMICADE, you may call AccessOneSM at 1-888-ACCESS-1 (222-3771) for free assistance. Tell them what has happened, and BTW-- I believe you have Medicare as Primary insurance? If your Part D Drug coverage refuses to cover it-- then you also can fall back on the Medicare Appeals and although the fight will be the same (not FDA approved for sarc) your MD can write a letter explaining that you've exhausted the other options and although this is not approved for sarc-- you have enough of the other symptoms-- sarcoid- induced arthritis, pulmonary involvement, iritis, etc-- severe neuro musclar involvement that is rapidly paralyzing your legs-- that they may go for it much MUCH sooner than your reg drug coverage. As for the infusions- I'd check with the local Home Infusion Businesses, and get an RN to come to you. The other choice is that you contact your local oncology centers and ask if they can do the infusion for you. Many of the privately owned ones will. Do you have a great relationship with any of the local (privately owned) pharmacies in town? I'd be talking with them-- and see if they can give you a deal on the Remicade. Remicade (Centacor) may even be willing to supply it directly to you at their cost for home infusion. That would be excellant as I suspect that over time, you'll need to increase the dosage. Do you know if you are getting 5mg/kg or if they are starting you at 3mg/kg. (Often they start that low and work up the dose to make sure you don't have any allergic reaction.) Keep the Benadryl or (shoot, what is the maed they give you for reactions_slipped the mind..) Anyway, these are all options-- and if you do have a copy of the prescription (or have the Rheumi send it to them via fax) they will work with you. (Centacor and the Home infusion folks) . Hang in there-- and know you are loved, Tracie NS Co-owner/moderator Re: Remicade update thanks , I know there is a reason for this yet another delay, so I am trying hard to what on his will not mine. thank you for the hugs and prayers, Marla Marla, Remember all things in His time. I'd call the company who makes Remicade and see what they tell you to do. There's got to be a doc out there who is in this for the patient and not the money. I will pray that God guides you to this person. Maybe this is just a step that God is doing to lead you to just the right person to give this to you. Keep the faith, girl. My prayers are with you. hugs Marla Bramer wrote: Well I didn't get the Remicade, we were told by our doctor, and my research that a dose would be between 1600-2300, so we were prepared to pay what we needed as Insurance still denied, well we got there, I told the nurse that we were self pay and she asked if I knew the medication was $16,000, for just the drug not the other $500 or so for the hospital, I even called our local pharmacist and he said there cost was $845 a vial, I would need 3, OK do the the math, that comes to 2535, a little more then we thought, but over $13000 more I don't think so, so the hospital is taking quite a profit on the drugs. Anyway, my doctor was blown out of the water too. I guess it might be possible to get this at a Rheumatalogist office in town?? so anyone paying that for Remicade please let me know. So here we are at the beginning again, well I fought for Methotrexate until I got it, so I guess I have to keep on fighting. I wish you all a very blessed weekend. Marla -- 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV). __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 Marla, I've been thinking on this one since Friday night, and here is where my mind went. Call the Remicade Hotline or go to their site: www.remicade.com If you have questions or concerns, or if you need additional information related to medical coverage for REMICADE, you may call AccessOneSM at 1-888-ACCESS-1 (222-3771) for free assistance. Tell them what has happened, and BTW-- I believe you have Medicare as Primary insurance? If your Part D Drug coverage refuses to cover it-- then you also can fall back on the Medicare Appeals and although the fight will be the same (not FDA approved for sarc) your MD can write a letter explaining that you've exhausted the other options and although this is not approved for sarc-- you have enough of the other symptoms-- sarcoid- induced arthritis, pulmonary involvement, iritis, etc-- severe neuro musclar involvement that is rapidly paralyzing your legs-- that they may go for it much MUCH sooner than your reg drug coverage. As for the infusions- I'd check with the local Home Infusion Businesses, and get an RN to come to you. The other choice is that you contact your local oncology centers and ask if they can do the infusion for you. Many of the privately owned ones will. Do you have a great relationship with any of the local (privately owned) pharmacies in town? I'd be talking with them-- and see if they can give you a deal on the Remicade. Remicade (Centacor) may even be willing to supply it directly to you at their cost for home infusion. That would be excellant as I suspect that over time, you'll need to increase the dosage. Do you know if you are getting 5mg/kg or if they are starting you at 3mg/kg. (Often they start that low and work up the dose to make sure you don't have any allergic reaction.) Keep the Benadryl or (shoot, what is the maed they give you for reactions_slipped the mind..) Anyway, these are all options-- and if you do have a copy of the prescription (or have the Rheumi send it to them via fax) they will work with you. (Centacor and the Home infusion folks) . Hang in there-- and know you are loved, Tracie NS Co-owner/moderator Re: Remicade update thanks , I know there is a reason for this yet another delay, so I am trying hard to what on his will not mine. thank you for the hugs and prayers, Marla Marla, Remember all things in His time. I'd call the company who makes Remicade and see what they tell you to do. There's got to be a doc out there who is in this for the patient and not the money. I will pray that God guides you to this person. Maybe this is just a step that God is doing to lead you to just the right person to give this to you. Keep the faith, girl. My prayers are with you. hugs Marla Bramer wrote: Well I didn't get the Remicade, we were told by our doctor, and my research that a dose would be between 1600-2300, so we were prepared to pay what we needed as Insurance still denied, well we got there, I told the nurse that we were self pay and she asked if I knew the medication was $16,000, for just the drug not the other $500 or so for the hospital, I even called our local pharmacist and he said there cost was $845 a vial, I would need 3, OK do the the math, that comes to 2535, a little more then we thought, but over $13000 more I don't think so, so the hospital is taking quite a profit on the drugs. Anyway, my doctor was blown out of the water too. I guess it might be possible to get this at a Rheumatalogist office in town?? so anyone paying that for Remicade please let me know. So here we are at the beginning again, well I fought for Methotrexate until I got it, so I guess I have to keep on fighting. I wish you all a very blessed weekend. Marla -- 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV). __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 Hi Tracie, I don't have Medicare, I have a PPO and they said no because it's not medically necessary for my disease, even though they received two letters from doctors stating that I will end up in a wheel chair without tx. I went to the website, but really couldn't find what I was looking for, they had nothing related to Sarcoid, but will call the number you gave me tomorrow. Thanks, Marla Marla, I've been thinking on this one since Friday night, and here is where my mind went. Call the Remicade Hotline or go to their site: www.remicade.com If you have questions or concerns, or if you need additional information related to medical coverage for REMICADE, you may call AccessOneSM at 1-888-ACCESS-1 (222-3771) for free assistance. Tell them what has happened, and BTW-- I believe you have Medicare as Primary insurance? If your Part D Drug coverage refuses to cover it-- then you also can fall back on the Medicare Appeals and although the fight will be the same (not FDA approved for sarc) your MD can write a letter explaining that you've exhausted the other options and although this is not approved for sarc-- you have enough of the other symptoms-- sarcoid- induced arthritis, pulmonary involvement, iritis, etc-- severe neuro musclar involvement that is rapidly paralyzing your legs-- that they may go for it much MUCH sooner than your reg drug coverage. As for the infusions- I'd check with the local Home Infusion Businesses, and get an RN to come to you. The other choice is that you contact your local oncology centers and ask if they can do the infusion for you. Many of the privately owned ones will. Do you have a great relationship with any of the local (privately owned) pharmacies in town? I'd be talking with them-- and see if they can give you a deal on the Remicade. Remicade (Centacor) may even be willing to supply it directly to you at their cost for home infusion. That would be excellant as I suspect that over time, you'll need to increase the dosage. Do you know if you are getting 5mg/kg or if they are starting you at 3mg/kg. (Often they start that low and work up the dose to make sure you don't have any allergic reaction.) Keep the Benadryl or (shoot, what is the maed they give you for reactions_slipped the mind..) Anyway, these are all options-- and if you do have a copy of the prescription (or have the Rheumi send it to them via fax) they will work with you. (Centacor and the Home infusion folks) . Hang in there-- and know you are loved, Tracie NS Co-owner/moderator Re: Remicade update thanks , I know there is a reason for this yet another delay, so I am trying hard to what on his will not mine. thank you for the hugs and prayers, Marla Marla, Remember all things in His time. I'd call the company who makes Remicade and see what they tell you to do. There's got to be a doc out there who is in this for the patient and not the money. I will pray that God guides you to this person. Maybe this is just a step that God is doing to lead you to just the right person to give this to you. Keep the faith, girl. My prayers are with you. hugs Marla Bramer wrote: Well I didn't get the Remicade, we were told by our doctor, and my research that a dose would be between 1600-2300, so we were prepared to pay what we needed as Insurance still denied, well we got there, I told the nurse that we were self pay and she asked if I knew the medication was $16,000, for just the drug not the other $500 or so for the hospital, I even called our local pharmacist and he said there cost was $845 a vial, I would need 3, OK do the the math, that comes to 2535, a little more then we thought, but over $13000 more I don't think so, so the hospital is taking quite a profit on the drugs. Anyway, my doctor was blown out of the water too. I guess it might be possible to get this at a Rheumatalogist office in town?? so anyone paying that for Remicade please let me know. So here we are at the beginning again, well I fought for Methotrexate until I got it, so I guess I have to keep on fighting. I wish you all a very blessed weekend. Marla -- 29:11, For I know the plans I have for you, " declares the Lord, " plans to prosper you and not to harm you, plans to give you hope and a future. " If anyone would come after Me, he must deny himself " ( 16:24 NIV). __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 Hi Tracie, I don't have Medicare, I have a PPO and they said no because it's not medically necessary for my disease, even though they received two letters from doctors stating that I will end up in a wheel chair without tx. I went to the website, but really couldn't find what I was looking for, they had nothing related to Sarcoid, but will call the number you gave me tomorrow. Thanks, Marla Marla, I've been thinking on this one since Friday night, and here is where my mind went. Call the Remicade Hotline or go to their site: www.remicade.com If you have questions or concerns, or if you need additional information related to medical coverage for REMICADE, you may call AccessOneSM at 1-888-ACCESS-1 (222-3771) for free assistance. Tell them what has happened, and BTW-- I believe you have Medicare as Primary insurance? If your Part D Drug coverage refuses to cover it-- then you also can fall back on the Medicare Appeals and although the fight will be the same (not FDA approved for sarc) your MD can write a letter explaining that you've exhausted the other options and although this is not approved for sarc-- you have enough of the other symptoms-- sarcoid- induced arthritis, pulmonary involvement, iritis, etc-- severe neuro musclar involvement that is rapidly paralyzing your legs-- that they may go for it much MUCH sooner than your reg drug coverage. As for the infusions- I'd check with the local Home Infusion Businesses, and get an RN to come to you. The other choice is that you contact your local oncology centers and ask if they can do the infusion for you. Many of the privately owned ones will. Do you have a great relationship with any of the local (privately owned) pharmacies in town? I'd be talking with them-- and see if they can give you a deal on the Remicade. Remicade (Centacor) may even be willing to supply it directly to you at their cost for home infusion. That would be excellant as I suspect that over time, you'll need to increase the dosage. Do you know if you are getting 5mg/kg or if they are starting you at 3mg/kg. (Often they start that low and work up the dose to make sure you don't have any allergic reaction.) Keep the Benadryl or (shoot, what is the maed they give you for reactions_slipped the mind..) Anyway, these are all options-- and if you do have a copy of the prescription (or have the Rheumi send it to them via fax) they will work with you. (Centacor and the Home infusion folks) . Hang in there-- and know you are loved, Tracie NS Co-owner/moderator Re: Remicade update thanks , I know there is a reason for this yet another delay, so I am trying hard to what on his will not mine. thank you for the hugs and prayers, Marla Marla, Remember all things in His time. I'd call the company who makes Remicade and see what they tell you to do. There's got to be a doc out there who is in this for the patient and not the money. I will pray that God guides you to this person. Maybe this is just a step that God is doing to lead you to just the right person to give this to you. Keep the faith, girl. My prayers are with you. hugs Marla Bramer wrote: Well I didn't get the Remicade, we were told by our doctor, and my research that a dose would be between 1600-2300, so we were prepared to pay what we needed as Insurance still denied, well we got there, I told the nurse that we were self pay and she asked if I knew the medication was $16,000, for just the drug not the other $500 or so for the hospital, I even called our local pharmacist and he said there cost was $845 a vial, I would need 3, OK do the the math, that comes to 2535, a little more then we thought, but over $13000 more I don't think so, so the hospital is taking quite a profit on the drugs. Anyway, my doctor was blown out of the water too. I guess it might be possible to get this at a Rheumatalogist office in town?? so anyone paying that for Remicade please let me know. So here we are at the beginning again, well I fought for Methotrexate until I got it, so I guess I have to keep on fighting. I wish you all a very blessed weekend. Marla -- 29:11, For I know the plans I have for you, " declares the Lord, " plans to prosper you and not to harm you, plans to give you hope and a future. " If anyone would come after Me, he must deny himself " ( 16:24 NIV). __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 Marla, Have you qualified for SSDI, or even filed for it? I'm thinking you've been unable to work for the last 4 yrs or so, and so would qualify to enroll in Medicare, and then have the PPO inhumana as secondary to Medicare? The reason I'm asking is that when I go to the Remicade site, go to "support" and go to insurance info-- specifically Medicare (I did read the stuff on PPO's also) Medicare Part B covers not only the office infusion (or outpt infusion in an ambulatory infusion center) and your copay would be about $90.00 a month for the Remicade, plus the infusion copay. So we need to get you pointed in that direction--even if it means that you sign up during the next open Medicare Enrollment in Oct/Nov. for 2009. Honestly, you coverage would be better and much less expensive for you! You'd want to be keeping the rest of the family on the plan you've already got for them. As for the PPO-- If the Centocor people (Remicade's maker) can supply you directly with a script from your MD naturally-- and this may take a call from your MD to them to make this happen-- then it would just be a matter of getting the infusion arranged thru a local infusion center or home infusion center. I'm also assuming that you have the copies of your letters of medical necessity that the MD's wrote for you-- you may want to get the fax # of the Centocor person you talk to-- and fax them directly. That way you don't get too many hands in the pot, and end up with the we can't find it process. (I've actually found them to be VERY helpful when I was first starting on the Remicade.) I do hope this helps-- and let me know about the SSDI stuff. My recall on that one is bunk. Hugs, Tracie Re: Remicade updatethanks , I know there is a reason for this yet another delay, so I am trying hard to what on his will not mine. thank you for the hugs and prayers, Marla Marla, Remember all things in His time. I'd call the company who makes Remicade and see what they tell you to do. There's got to be a doc out there who is in this for the patient and not the money. I will pray that God guides you to this person. Maybe this is just a step that God is doing to lead you to just the right person to give this to you. Keep the faith, girl. My prayers are with you. hugs Marla Bramer wrote: Well I didn't get the Remicade, we were told by our doctor, and my research that a dose would be between 1600-2300, so we were prepared to pay what we needed as Insurance still denied, well we got there, I told the nurse that we were self pay and she asked if I knew the medication was $16,000, for just the drug not the other $500 or so for the hospital, I even called our local pharmacist and he said there cost was $845 a vial, I would need 3, OK do the the math, that comes to 2535, a little more then we thought, but over $13000 more I don't think so, so the hospital is taking quite a profit on the drugs. Anyway, my doctor was blown out of the water too. I guess it might be possible to get this at a Rheumatalogist office in town?? so anyone paying that for Remicade please let me know. So here we are at the beginning again, well I fought for Methotrexate until I got it, so I guess I have to keep on fighting. I wish you all a very blessed weekend. Marla -- 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV). __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 Marla, Have you qualified for SSDI, or even filed for it? I'm thinking you've been unable to work for the last 4 yrs or so, and so would qualify to enroll in Medicare, and then have the PPO inhumana as secondary to Medicare? The reason I'm asking is that when I go to the Remicade site, go to "support" and go to insurance info-- specifically Medicare (I did read the stuff on PPO's also) Medicare Part B covers not only the office infusion (or outpt infusion in an ambulatory infusion center) and your copay would be about $90.00 a month for the Remicade, plus the infusion copay. So we need to get you pointed in that direction--even if it means that you sign up during the next open Medicare Enrollment in Oct/Nov. for 2009. Honestly, you coverage would be better and much less expensive for you! You'd want to be keeping the rest of the family on the plan you've already got for them. As for the PPO-- If the Centocor people (Remicade's maker) can supply you directly with a script from your MD naturally-- and this may take a call from your MD to them to make this happen-- then it would just be a matter of getting the infusion arranged thru a local infusion center or home infusion center. I'm also assuming that you have the copies of your letters of medical necessity that the MD's wrote for you-- you may want to get the fax # of the Centocor person you talk to-- and fax them directly. That way you don't get too many hands in the pot, and end up with the we can't find it process. (I've actually found them to be VERY helpful when I was first starting on the Remicade.) I do hope this helps-- and let me know about the SSDI stuff. My recall on that one is bunk. Hugs, Tracie Re: Remicade updatethanks , I know there is a reason for this yet another delay, so I am trying hard to what on his will not mine. thank you for the hugs and prayers, Marla Marla, Remember all things in His time. I'd call the company who makes Remicade and see what they tell you to do. There's got to be a doc out there who is in this for the patient and not the money. I will pray that God guides you to this person. Maybe this is just a step that God is doing to lead you to just the right person to give this to you. Keep the faith, girl. My prayers are with you. hugs Marla Bramer wrote: Well I didn't get the Remicade, we were told by our doctor, and my research that a dose would be between 1600-2300, so we were prepared to pay what we needed as Insurance still denied, well we got there, I told the nurse that we were self pay and she asked if I knew the medication was $16,000, for just the drug not the other $500 or so for the hospital, I even called our local pharmacist and he said there cost was $845 a vial, I would need 3, OK do the the math, that comes to 2535, a little more then we thought, but over $13000 more I don't think so, so the hospital is taking quite a profit on the drugs. Anyway, my doctor was blown out of the water too. I guess it might be possible to get this at a Rheumatalogist office in town?? so anyone paying that for Remicade please let me know. So here we are at the beginning again, well I fought for Methotrexate until I got it, so I guess I have to keep on fighting. I wish you all a very blessed weekend. Marla -- 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV). __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2008 Report Share Posted April 14, 2008 I am so sorry that the cost was out of reach. From my post, I didn't know you were paying for it yourself. What a disappointment you must being experiencing. Hang in there, okay? Hugs, Debbie > > Well I didn't get the Remicade, we were told by our doctor, and my research > that a dose would be between 1600-2300, so we were prepared to pay what we > needed as Insurance still denied, well we got there, I told the nurse that > we were self pay and she asked if I knew the medication was *$16,000, *for > just the drug not the other $500 or so for the hospital, I even called our > local pharmacist and he said there cost was $845 a vial, I would need 3, OK > do the the math, that comes to 2535, a little more then we thought, but over > $13000 more I don't think so, so the hospital is taking quite a profit on > the drugs. Anyway, my doctor was blown out of the water too. I guess it > might be possible to get this at a Rheumatalogist office in town?? so anyone > paying that for Remicade please let me know. So here we are at the beginning > again, well I fought for Methotrexate until I got it, so I guess I have to > keep on fighting. > I wish you all a very blessed weekend. Marla > > -- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2008 Report Share Posted April 14, 2008 I am so sorry that the cost was out of reach. From my post, I didn't know you were paying for it yourself. What a disappointment you must being experiencing. Hang in there, okay? Hugs, Debbie > > Well I didn't get the Remicade, we were told by our doctor, and my research > that a dose would be between 1600-2300, so we were prepared to pay what we > needed as Insurance still denied, well we got there, I told the nurse that > we were self pay and she asked if I knew the medication was *$16,000, *for > just the drug not the other $500 or so for the hospital, I even called our > local pharmacist and he said there cost was $845 a vial, I would need 3, OK > do the the math, that comes to 2535, a little more then we thought, but over > $13000 more I don't think so, so the hospital is taking quite a profit on > the drugs. Anyway, my doctor was blown out of the water too. I guess it > might be possible to get this at a Rheumatalogist office in town?? so anyone > paying that for Remicade please let me know. So here we are at the beginning > again, well I fought for Methotrexate until I got it, so I guess I have to > keep on fighting. > I wish you all a very blessed weekend. Marla > > -- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2008 Report Share Posted April 14, 2008 Hi Tracie, I am not on SSDI or even tried to get on it, does it depend what your spouse makes? I will try and call the Remicade number today, I just have to keep thinking that maybe this is not the drug for me, do you know of any other drugs that will help with neuro part? Well I have to go pick up our taxes, another downer day:) Thank you Tracie, I am so glad God put you in my life, love ya, Marla Marla, Have you qualified for SSDI, or even filed for it? I'm thinking you've been unable to work for the last 4 yrs or so, and so would qualify to enroll in Medicare, and then have the PPO inhumana as secondary to Medicare? The reason I'm asking is that when I go to the Remicade site, go to " support " and go to insurance info-- specifically Medicare (I did read the stuff on PPO's also) Medicare Part B covers not only the office infusion (or outpt infusion in an ambulatory infusion center) and your copay would be about $90.00 a month for the Remicade, plus the infusion copay. So we need to get you pointed in that direction--even if it means that you sign up during the next open Medicare Enrollment in Oct/Nov. for 2009. Honestly, you coverage would be better and much less expensive for you! You'd want to be keeping the rest of the family on the plan you've already got for them. As for the PPO-- If the Centocor people (Remicade's maker) can supply you directly with a script from your MD naturally-- and this may take a call from your MD to them to make this happen-- then it would just be a matter of getting the infusion arranged thru a local infusion center or home infusion center. I'm also assuming that you have the copies of your letters of medical necessity that the MD's wrote for you-- you may want to get the fax # of the Centocor person you talk to-- and fax them directly. That way you don't get too many hands in the pot, and end up with the we can't find it process. (I've actually found them to be VERY helpful when I was first starting on the Remicade.) I do hope this helps-- and let me know about the SSDI stuff. My recall on that one is bunk. Hugs, Tracie Re: Remicade updatethanks , I know there is a reason for this yet another delay, so I am trying hard to what on his will not mine. thank you for the hugs and prayers, Marla Marla, Remember all things in His time. I'd call the company who makes Remicade and see what they tell you to do. There's got to be a doc out there who is in this for the patient and not the money. I will pray that God guides you to this person. Maybe this is just a step that God is doing to lead you to just the right person to give this to you. Keep the faith, girl. My prayers are with you. hugs Marla Bramer wrote: Well I didn't get the Remicade, we were told by our doctor, and my research that a dose would be between 1600-2300, so we were prepared to pay what we needed as Insurance still denied, well we got there, I told the nurse that we were self pay and she asked if I knew the medication was $16,000, for just the drug not the other $500 or so for the hospital, I even called our local pharmacist and he said there cost was $845 a vial, I would need 3, OK do the the math, that comes to 2535, a little more then we thought, but over $13000 more I don't think so, so the hospital is taking quite a profit on the drugs. Anyway, my doctor was blown out of the water too. I guess it might be possible to get this at a Rheumatalogist office in town?? so anyone paying that for Remicade please let me know. So here we are at the beginning again, well I fought for Methotrexate until I got it, so I guess I have to keep on fighting. I wish you all a very blessed weekend. Marla -- 29:11, For I know the plans I have for you, " declares the Lord, " plans to prosper you and not to harm you, plans to give you hope and a future. " If anyone would come after Me, he must deny himself " ( 16:24 NIV). __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2008 Report Share Posted April 14, 2008 Hi Tracie, I am not on SSDI or even tried to get on it, does it depend what your spouse makes? I will try and call the Remicade number today, I just have to keep thinking that maybe this is not the drug for me, do you know of any other drugs that will help with neuro part? Well I have to go pick up our taxes, another downer day:) Thank you Tracie, I am so glad God put you in my life, love ya, Marla Marla, Have you qualified for SSDI, or even filed for it? I'm thinking you've been unable to work for the last 4 yrs or so, and so would qualify to enroll in Medicare, and then have the PPO inhumana as secondary to Medicare? The reason I'm asking is that when I go to the Remicade site, go to " support " and go to insurance info-- specifically Medicare (I did read the stuff on PPO's also) Medicare Part B covers not only the office infusion (or outpt infusion in an ambulatory infusion center) and your copay would be about $90.00 a month for the Remicade, plus the infusion copay. So we need to get you pointed in that direction--even if it means that you sign up during the next open Medicare Enrollment in Oct/Nov. for 2009. Honestly, you coverage would be better and much less expensive for you! You'd want to be keeping the rest of the family on the plan you've already got for them. As for the PPO-- If the Centocor people (Remicade's maker) can supply you directly with a script from your MD naturally-- and this may take a call from your MD to them to make this happen-- then it would just be a matter of getting the infusion arranged thru a local infusion center or home infusion center. I'm also assuming that you have the copies of your letters of medical necessity that the MD's wrote for you-- you may want to get the fax # of the Centocor person you talk to-- and fax them directly. That way you don't get too many hands in the pot, and end up with the we can't find it process. (I've actually found them to be VERY helpful when I was first starting on the Remicade.) I do hope this helps-- and let me know about the SSDI stuff. My recall on that one is bunk. Hugs, Tracie Re: Remicade updatethanks , I know there is a reason for this yet another delay, so I am trying hard to what on his will not mine. thank you for the hugs and prayers, Marla Marla, Remember all things in His time. I'd call the company who makes Remicade and see what they tell you to do. There's got to be a doc out there who is in this for the patient and not the money. I will pray that God guides you to this person. Maybe this is just a step that God is doing to lead you to just the right person to give this to you. Keep the faith, girl. My prayers are with you. hugs Marla Bramer wrote: Well I didn't get the Remicade, we were told by our doctor, and my research that a dose would be between 1600-2300, so we were prepared to pay what we needed as Insurance still denied, well we got there, I told the nurse that we were self pay and she asked if I knew the medication was $16,000, for just the drug not the other $500 or so for the hospital, I even called our local pharmacist and he said there cost was $845 a vial, I would need 3, OK do the the math, that comes to 2535, a little more then we thought, but over $13000 more I don't think so, so the hospital is taking quite a profit on the drugs. Anyway, my doctor was blown out of the water too. I guess it might be possible to get this at a Rheumatalogist office in town?? so anyone paying that for Remicade please let me know. So here we are at the beginning again, well I fought for Methotrexate until I got it, so I guess I have to keep on fighting. I wish you all a very blessed weekend. Marla -- 29:11, For I know the plans I have for you, " declares the Lord, " plans to prosper you and not to harm you, plans to give you hope and a future. " If anyone would come after Me, he must deny himself " ( 16:24 NIV). __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2008 Report Share Posted April 14, 2008 SSDI is for when someone that has worked 40 quarters over their lifetime finds themself unemployed because of illness, and has been out of work for 2yrs due to the illness-- then it makes up a portion of YOUR previous income--a whopping 25%. It also enables you to get onto Medicare-- which would be the better coverage for you-- even if you pay out of pocket for 2ndry coverage. So file!! Even if you don't qualify for SSDI, at least you would get the early Medicare. DO NOT confuse Medicare with Medicaid--(the State coverage for low income). Medicare is the FEDERAL insurance and we've paid into it for years with deductions straight off the top of your paychecks. You've also been paying into SSI/SSDI for the reason that if you did end up with an illness prior to getting old-- you had some protection. Now-- for the Remicade thing-- I too went to the place of "is this what she needs" or are these roadblocks coming because it's not the right one. I'm thinking that Humira or Enbrel may be easier places to start-- and they are injections you can give yourself. They are still Biologicals-- And although they target a bit more than just the TNF-a, TNF-b- there are many who are benefiting from them. I know Stinson was on ENBREL and he did very well, but decided he felt more run down the longer he took it- and he didn't like that-- so he decided to quit it. I'd check with your insurance and (didn't they bring up Humira? at the hearing?) They may go for it and it is only a fraction of the cost-- it would be worth it. The other is the cyclosporine (cyclophosphidimide) actually Cytoxan-- and that even low dose is nasty chemo with the heavier side effects of hair loss, nauseau, etc. One thing with the BRMS- is that your hair gets thinner (thicker on the chin... or maybe that's all the testestorone in my house) but you feel like you want to sleep for a few days-- but the rebound is great with energy and vey little pain. My feelings, go with your instincts. We know that it is our Divine Guidance-- so come back to that place. I too, am feeling so very blessed that our paths have crossed!! Love, Tracie Re: Remicade updatethanks , I know there is a reason for this yet another delay, so I am trying hard to what on his will not mine. thank you for the hugs and prayers, Marla Marla, Remember all things in His time. I'd call the company who makes Remicade and see what they tell you to do. There's got to be a doc out there who is in this for the patient and not the money. I will pray that God guides you to this person. Maybe this is just a step that God is doing to lead you to just the right person to give this to you. Keep the faith, girl. My prayers are with you. hugs Marla Bramer wrote: Well I didn't get the Remicade, we were told by our doctor, and my research that a dose would be between 1600-2300, so we were prepared to pay what we needed as Insurance still denied, well we got there, I told the nurse that we were self pay and she asked if I knew the medication was $16,000, for just the drug not the other $500 or so for the hospital, I even called our local pharmacist and he said there cost was $845 a vial, I would need 3, OK do the the math, that comes to 2535, a little more then we thought, but over $13000 more I don't think so, so the hospital is taking quite a profit on the drugs. Anyway, my doctor was blown out of the water too. I guess it might be possible to get this at a Rheumatalogist office in town?? so anyone paying that for Remicade please let me know. So here we are at the beginning again, well I fought for Methotrexate until I got it, so I guess I have to keep on fighting. I wish you all a very blessed weekend. Marla -- 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV). __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2008 Report Share Posted April 14, 2008 SSDI is for when someone that has worked 40 quarters over their lifetime finds themself unemployed because of illness, and has been out of work for 2yrs due to the illness-- then it makes up a portion of YOUR previous income--a whopping 25%. It also enables you to get onto Medicare-- which would be the better coverage for you-- even if you pay out of pocket for 2ndry coverage. So file!! Even if you don't qualify for SSDI, at least you would get the early Medicare. DO NOT confuse Medicare with Medicaid--(the State coverage for low income). Medicare is the FEDERAL insurance and we've paid into it for years with deductions straight off the top of your paychecks. You've also been paying into SSI/SSDI for the reason that if you did end up with an illness prior to getting old-- you had some protection. Now-- for the Remicade thing-- I too went to the place of "is this what she needs" or are these roadblocks coming because it's not the right one. I'm thinking that Humira or Enbrel may be easier places to start-- and they are injections you can give yourself. They are still Biologicals-- And although they target a bit more than just the TNF-a, TNF-b- there are many who are benefiting from them. I know Stinson was on ENBREL and he did very well, but decided he felt more run down the longer he took it- and he didn't like that-- so he decided to quit it. I'd check with your insurance and (didn't they bring up Humira? at the hearing?) They may go for it and it is only a fraction of the cost-- it would be worth it. The other is the cyclosporine (cyclophosphidimide) actually Cytoxan-- and that even low dose is nasty chemo with the heavier side effects of hair loss, nauseau, etc. One thing with the BRMS- is that your hair gets thinner (thicker on the chin... or maybe that's all the testestorone in my house) but you feel like you want to sleep for a few days-- but the rebound is great with energy and vey little pain. My feelings, go with your instincts. We know that it is our Divine Guidance-- so come back to that place. I too, am feeling so very blessed that our paths have crossed!! Love, Tracie Re: Remicade updatethanks , I know there is a reason for this yet another delay, so I am trying hard to what on his will not mine. thank you for the hugs and prayers, Marla Marla, Remember all things in His time. I'd call the company who makes Remicade and see what they tell you to do. There's got to be a doc out there who is in this for the patient and not the money. I will pray that God guides you to this person. Maybe this is just a step that God is doing to lead you to just the right person to give this to you. Keep the faith, girl. My prayers are with you. hugs Marla Bramer wrote: Well I didn't get the Remicade, we were told by our doctor, and my research that a dose would be between 1600-2300, so we were prepared to pay what we needed as Insurance still denied, well we got there, I told the nurse that we were self pay and she asked if I knew the medication was $16,000, for just the drug not the other $500 or so for the hospital, I even called our local pharmacist and he said there cost was $845 a vial, I would need 3, OK do the the math, that comes to 2535, a little more then we thought, but over $13000 more I don't think so, so the hospital is taking quite a profit on the drugs. Anyway, my doctor was blown out of the water too. I guess it might be possible to get this at a Rheumatalogist office in town?? so anyone paying that for Remicade please let me know. So here we are at the beginning again, well I fought for Methotrexate until I got it, so I guess I have to keep on fighting. I wish you all a very blessed weekend. Marla -- 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV). __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2008 Report Share Posted April 14, 2008 Re: Remicade updatethanks , I know there is a reason for this yet another delay, so I am trying hard to what on his will not mine. thank you for the hugs and prayers, Marla Marla, Remember all things in His time. I'd call the company who makes Remicade and see what they tell you to do. There's got to be a doc out there who is in this for the patient and not the money. I will pray that God guides you to this person. Maybe this is just a step that God is doing to lead you to just the right person to give this to you. Keep the faith, girl. My prayers are with you. hugs Marla Bramer wrote: Well I didn't get the Remicade, we were told by our doctor, and my research that a dose would be between 1600-2300, so we were prepared to pay what we needed as Insurance still denied, well we got there, I told the nurse that we were self pay and she asked if I knew the medication was $16,000, for just the drug not the other $500 or so for the hospital, I even called our local pharmacist and he said there cost was $845 a vial, I would need 3, OK do the the math, that comes to 2535, a little more then we thought, but over $13000 more I don't think so, so the hospital is taking quite a profit on the drugs. Anyway, my doctor was blown out of the water too. I guess it might be possible to get this at a Rheumatalogist office in town?? so anyone paying that for Remicade please let me know. So here we are at the beginning again, well I fought for Methotrexate until I got it, so I guess I have to keep on fighting. I wish you all a very blessed weekend. Marla -- 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV). __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2008 Report Share Posted April 14, 2008 Re: Remicade updatethanks , I know there is a reason for this yet another delay, so I am trying hard to what on his will not mine. thank you for the hugs and prayers, Marla Marla, Remember all things in His time. I'd call the company who makes Remicade and see what they tell you to do. There's got to be a doc out there who is in this for the patient and not the money. I will pray that God guides you to this person. Maybe this is just a step that God is doing to lead you to just the right person to give this to you. Keep the faith, girl. My prayers are with you. hugs Marla Bramer wrote: Well I didn't get the Remicade, we were told by our doctor, and my research that a dose would be between 1600-2300, so we were prepared to pay what we needed as Insurance still denied, well we got there, I told the nurse that we were self pay and she asked if I knew the medication was $16,000, for just the drug not the other $500 or so for the hospital, I even called our local pharmacist and he said there cost was $845 a vial, I would need 3, OK do the the math, that comes to 2535, a little more then we thought, but over $13000 more I don't think so, so the hospital is taking quite a profit on the drugs. Anyway, my doctor was blown out of the water too. I guess it might be possible to get this at a Rheumatalogist office in town?? so anyone paying that for Remicade please let me know. So here we are at the beginning again, well I fought for Methotrexate until I got it, so I guess I have to keep on fighting. I wish you all a very blessed weekend. Marla -- 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV). __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2008 Report Share Posted April 15, 2008 Tracie, yesterday I had errands to run, so I kept the radio off and asked God to speak to me, well after I while I turned the radio on as too quiet which I like sometimes, anyway, it wasn't until last night as I was falling asleep I heard, what about the Humeria, and I did not once think of that recently, I think I will check into these other things. The reason I have not applied for SSDI is the income limitation, I do OK in Kay and don't want any limitations on me, but who knows? Thank you Tracie SSDI is for when someone that has worked 40 quarters over their lifetime finds themself unemployed because of illness, and has been out of work for 2yrs due to the illness-- then it makes up a portion of YOUR previous income--a whopping 25%. It also enables you to get onto Medicare-- which would be the better coverage for you-- even if you pay out of pocket for 2ndry coverage. So file!! Even if you don't qualify for SSDI, at least you would get the early Medicare. DO NOT confuse Medicare with Medicaid--(the State coverage for low income). Medicare is the FEDERAL insurance and we've paid into it for years with deductions straight off the top of your paychecks. You've also been paying into SSI/SSDI for the reason that if you did end up with an illness prior to getting old-- you had some protection. Now-- for the Remicade thing-- I too went to the place of " is this what she needs " or are these roadblocks coming because it's not the right one. I'm thinking that Humira or Enbrel may be easier places to start-- and they are injections you can give yourself. They are still Biologicals-- And although they target a bit more than just the TNF-a, TNF-b- there are many who are benefiting from them. I know Stinson was on ENBREL and he did very well, but decided he felt more run down the longer he took it- and he didn't like that-- so he decided to quit it. I'd check with your insurance and (didn't they bring up Humira? at the hearing?) They may go for it and it is only a fraction of the cost-- it would be worth it. The other is the cyclosporine (cyclophosphidimide) actually Cytoxan-- and that even low dose is nasty chemo with the heavier side effects of hair loss, nauseau, etc. One thing with the BRMS- is that your hair gets thinner (thicker on the chin... or maybe that's all the testestorone in my house) but you feel like you want to sleep for a few days-- but the rebound is great with energy and vey little pain. My feelings, go with your instincts. We know that it is our Divine Guidance-- so come back to that place. I too, am feeling so very blessed that our paths have crossed!! Love, Tracie Re: Remicade updatethanks , I know there is a reason for this yet another delay, so I am trying hard to what on his will not mine. thank you for the hugs and prayers, Marla Marla, Remember all things in His time. I'd call the company who makes Remicade and see what they tell you to do. There's got to be a doc out there who is in this for the patient and not the money. I will pray that God guides you to this person. Maybe this is just a step that God is doing to lead you to just the right person to give this to you. Keep the faith, girl. My prayers are with you. hugs Marla Bramer wrote: Well I didn't get the Remicade, we were told by our doctor, and my research that a dose would be between 1600-2300, so we were prepared to pay what we needed as Insurance still denied, well we got there, I told the nurse that we were self pay and she asked if I knew the medication was $16,000, for just the drug not the other $500 or so for the hospital, I even called our local pharmacist and he said there cost was $845 a vial, I would need 3, OK do the the math, that comes to 2535, a little more then we thought, but over $13000 more I don't think so, so the hospital is taking quite a profit on the drugs. Anyway, my doctor was blown out of the water too. I guess it might be possible to get this at a Rheumatalogist office in town?? so anyone paying that for Remicade please let me know. So here we are at the beginning again, well I fought for Methotrexate until I got it, so I guess I have to keep on fighting. I wish you all a very blessed weekend. Marla -- 29:11, For I know the plans I have for you, " declares the Lord, " plans to prosper you and not to harm you, plans to give you hope and a future. " If anyone would come after Me, he must deny himself " ( 16:24 NIV). __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2008 Report Share Posted April 15, 2008 Tracie, yesterday I had errands to run, so I kept the radio off and asked God to speak to me, well after I while I turned the radio on as too quiet which I like sometimes, anyway, it wasn't until last night as I was falling asleep I heard, what about the Humeria, and I did not once think of that recently, I think I will check into these other things. The reason I have not applied for SSDI is the income limitation, I do OK in Kay and don't want any limitations on me, but who knows? Thank you Tracie SSDI is for when someone that has worked 40 quarters over their lifetime finds themself unemployed because of illness, and has been out of work for 2yrs due to the illness-- then it makes up a portion of YOUR previous income--a whopping 25%. It also enables you to get onto Medicare-- which would be the better coverage for you-- even if you pay out of pocket for 2ndry coverage. So file!! Even if you don't qualify for SSDI, at least you would get the early Medicare. DO NOT confuse Medicare with Medicaid--(the State coverage for low income). Medicare is the FEDERAL insurance and we've paid into it for years with deductions straight off the top of your paychecks. You've also been paying into SSI/SSDI for the reason that if you did end up with an illness prior to getting old-- you had some protection. Now-- for the Remicade thing-- I too went to the place of " is this what she needs " or are these roadblocks coming because it's not the right one. I'm thinking that Humira or Enbrel may be easier places to start-- and they are injections you can give yourself. They are still Biologicals-- And although they target a bit more than just the TNF-a, TNF-b- there are many who are benefiting from them. I know Stinson was on ENBREL and he did very well, but decided he felt more run down the longer he took it- and he didn't like that-- so he decided to quit it. I'd check with your insurance and (didn't they bring up Humira? at the hearing?) They may go for it and it is only a fraction of the cost-- it would be worth it. The other is the cyclosporine (cyclophosphidimide) actually Cytoxan-- and that even low dose is nasty chemo with the heavier side effects of hair loss, nauseau, etc. One thing with the BRMS- is that your hair gets thinner (thicker on the chin... or maybe that's all the testestorone in my house) but you feel like you want to sleep for a few days-- but the rebound is great with energy and vey little pain. My feelings, go with your instincts. We know that it is our Divine Guidance-- so come back to that place. I too, am feeling so very blessed that our paths have crossed!! Love, Tracie Re: Remicade updatethanks , I know there is a reason for this yet another delay, so I am trying hard to what on his will not mine. thank you for the hugs and prayers, Marla Marla, Remember all things in His time. I'd call the company who makes Remicade and see what they tell you to do. There's got to be a doc out there who is in this for the patient and not the money. I will pray that God guides you to this person. Maybe this is just a step that God is doing to lead you to just the right person to give this to you. Keep the faith, girl. My prayers are with you. hugs Marla Bramer wrote: Well I didn't get the Remicade, we were told by our doctor, and my research that a dose would be between 1600-2300, so we were prepared to pay what we needed as Insurance still denied, well we got there, I told the nurse that we were self pay and she asked if I knew the medication was $16,000, for just the drug not the other $500 or so for the hospital, I even called our local pharmacist and he said there cost was $845 a vial, I would need 3, OK do the the math, that comes to 2535, a little more then we thought, but over $13000 more I don't think so, so the hospital is taking quite a profit on the drugs. Anyway, my doctor was blown out of the water too. I guess it might be possible to get this at a Rheumatalogist office in town?? so anyone paying that for Remicade please let me know. So here we are at the beginning again, well I fought for Methotrexate until I got it, so I guess I have to keep on fighting. I wish you all a very blessed weekend. Marla -- 29:11, For I know the plans I have for you, " declares the Lord, " plans to prosper you and not to harm you, plans to give you hope and a future. " If anyone would come after Me, he must deny himself " ( 16:24 NIV). __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2008 Report Share Posted April 16, 2008 Correction, for SSDI you only have to have a condition that will last 12 months or more, not 2 years and you don't have to be out of work for that long to receive benefits. Your onset date can be while you were working, while sick. Therefore, you can file, before you are unemployed. Re: Remicade updatethanks , I know there is a reason for this yet another delay, so I am trying hard to what on his will not mine. thank you for the hugs and prayers, Marla On Sat, Apr 12, 2008 at 7:27 PM, Solberg <mary_s777 (AT) yahoo (DOT) com> wrote: Marla, Remember all things in His time. I'd call the company who makes Remicade and see what they tell you to do. There's got to be a doc out there who is in this for the patient and not the money. I will pray that God guides you to this person. Maybe this is just a step that God is doing to lead you to just the right person to give this to you. Keep the faith, girl. My prayers are with you. hugs Marla Bramer <mebramer (AT) gmail (DOT) com> wrote: Well I didn't get the Remicade, we were told by our doctor, and my research that a dose would be between 1600-2300, so we were prepared to pay what we needed as Insurance still denied, well we got there, I told the nurse that we were self pay and she asked if I knew the medication was $16,000, for just the drug not the other $500 or so for the hospital, I even called our local pharmacist and he said there cost was $845 a vial, I would need 3, OK do the the math, that comes to 2535, a little more then we thought, but over $13000 more I don't think so, so the hospital is taking quite a profit on the drugs. Anyway, my doctor was blown out of the water too. I guess it might be possible to get this at a Rheumatalogist office in town?? so anyone paying that for Remicade please let me know. So here we are at the beginning again, well I fought for Methotrexate until I got it, so I guess I have to keep on fighting. I wish you all a very blessed weekend. Marla -- 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV). ____________ _________ _________ _________ _________ __ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2008 Report Share Posted April 16, 2008 Correction, for SSDI you only have to have a condition that will last 12 months or more, not 2 years and you don't have to be out of work for that long to receive benefits. Your onset date can be while you were working, while sick. Therefore, you can file, before you are unemployed. Re: Remicade updatethanks , I know there is a reason for this yet another delay, so I am trying hard to what on his will not mine. thank you for the hugs and prayers, Marla On Sat, Apr 12, 2008 at 7:27 PM, Solberg <mary_s777 (AT) yahoo (DOT) com> wrote: Marla, Remember all things in His time. I'd call the company who makes Remicade and see what they tell you to do. There's got to be a doc out there who is in this for the patient and not the money. I will pray that God guides you to this person. Maybe this is just a step that God is doing to lead you to just the right person to give this to you. Keep the faith, girl. My prayers are with you. hugs Marla Bramer <mebramer (AT) gmail (DOT) com> wrote: Well I didn't get the Remicade, we were told by our doctor, and my research that a dose would be between 1600-2300, so we were prepared to pay what we needed as Insurance still denied, well we got there, I told the nurse that we were self pay and she asked if I knew the medication was $16,000, for just the drug not the other $500 or so for the hospital, I even called our local pharmacist and he said there cost was $845 a vial, I would need 3, OK do the the math, that comes to 2535, a little more then we thought, but over $13000 more I don't think so, so the hospital is taking quite a profit on the drugs. Anyway, my doctor was blown out of the water too. I guess it might be possible to get this at a Rheumatalogist office in town?? so anyone paying that for Remicade please let me know. So here we are at the beginning again, well I fought for Methotrexate until I got it, so I guess I have to keep on fighting. I wish you all a very blessed weekend. Marla -- 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV). ____________ _________ _________ _________ _________ __ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2008 Report Share Posted April 29, 2008 Hi Marla, By the time I am reading this you probably have this all figured out. Two things--one is I think you went to the right source to find out what to take. I wish I would start by asking God instead of struggling to figure it out and then when I can't I go to Him. I was doing that just now. I have a neurology appt. tomorrow and I was frantically trying to read through 300 emails (I haven't felt good and am way behind again) to find any info on what I could ask the doctor for to help with pain and to slow the progression. I found my answer in your email below. I should be praying. Thanks!Next, when I applied for ssdi they said I can make $980/month and not lose it. I am still waiting to see if I am approved. You are in my prayers! CathyMarla Bramer wrote: Tracie, yesterday I had errands to run, so I kept the radio off and asked God to speak to me, well after I while I turned the radio on as too quiet which I like sometimes, anyway, it wasn't until last night as I was falling asleep I heard, what about the Humeria, and I did not once think of that recently, I think I will check into these other things. The reason I have not applied for SSDI is the income limitation, I do OK in Kay and don't want any limitations on me, but who knows? Thank you Tracie On Tue, Apr 15, 2008 at 6:27 AM, tracie feldhaus <tiodaat2001 (AT) yahoo (DOT) com> wrote: SSDI is for when someone that has worked 40 quarters over their lifetime finds themself unemployed because of illness, and has been out of work for 2yrs due to the illness-- then it makes up a portion of YOUR previous income--a whopping 25%. It also enables you to get onto Medicare-- which would be the better coverage for you-- even if you pay out of pocket for 2ndry coverage. So file!! Even if you don't qualify for SSDI, at least you would get the early Medicare. DO NOT confuse Medicare with Medicaid--(the State coverage for low income). Medicare is the FEDERAL insurance and we've paid into it for years with deductions straight off the top of your paychecks. You've also been paying into SSI/SSDI for the reason that if you did end up with an illness prior to getting old-- you had some protection. Now-- for the Remicade thing-- I too went to the place of "is this what she needs" or are these roadblocks coming because it's not the right one. I'm thinking that Humira or Enbrel may be easier places to start-- and they are injections you can give yourself. They are still Biologicals-- And although they target a bit more than just the TNF-a, TNF-b- there are many who are benefiting from them. I know Stinson was on ENBREL and he did very well, but decided he felt more run down the longer he took it- and he didn't like that-- so he decided to quit it. I'd check with your insurance and (didn't they bring up Humira? at the hearing?) They may go for it and it is only a fraction of the cost-- it would be worth it. The other is the cyclosporine (cyclophosphidimide) actually Cytoxan-- and that even low dose is nasty chemo with the heavier side effects of hair loss, nauseau, etc. One thing with the BRMS- is that your hair gets thinner (thicker on the chin... or maybe that's all the testestorone in my house) but you feel like you want to sleep for a few days-- but the rebound is great with energy and vey little pain. My feelings, go with your instincts. We know that it is our Divine Guidance-- so come back to that place. I too, am feeling so very blessed that our paths have crossed!! Love, Tracie Re: Remicade updatethanks , I know there is a reason for this yet another delay, so I am trying hard to what on his will not mine. thank you for the hugs and prayers, Marla On Sat, Apr 12, 2008 at 7:27 PM, Solberg <mary_s777 (AT) yahoo (DOT) com> wrote: Marla, Remember all things in His time. I'd call the company who makes Remicade and see what they tell you to do. There's got to be a doc out there who is in this for the patient and not the money. I will pray that God guides you to this person. Maybe this is just a step that God is doing to lead you to just the right person to give this to you. Keep the faith, girl. My prayers are with you. hugs Marla Bramer <mebramer (AT) gmail (DOT) com> wrote: Well I didn't get the Remicade, we were told by our doctor, and my research that a dose would be between 1600-2300, so we were prepared to pay what we needed as Insurance still denied, well we got there, I told the nurse that we were self pay and she asked if I knew the medication was $16,000, for just the drug not the other $500 or so for the hospital, I even called our local pharmacist and he said there cost was $845 a vial, I would need 3, OK do the the math, that comes to 2535, a little more then we thought, but over $13000 more I don't think so, so the hospital is taking quite a profit on the drugs. Anyway, my doctor was blown out of the water too. I guess it might be possible to get this at a Rheumatalogist office in town?? so anyone paying that for Remicade please let me know. So here we are at the beginning again, well I fought for Methotrexate until I got it, so I guess I have to keep on fighting. I wish you all a very blessed weekend. Marla -- 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV). __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2008 Report Share Posted April 29, 2008 Hi Marla, By the time I am reading this you probably have this all figured out. Two things--one is I think you went to the right source to find out what to take. I wish I would start by asking God instead of struggling to figure it out and then when I can't I go to Him. I was doing that just now. I have a neurology appt. tomorrow and I was frantically trying to read through 300 emails (I haven't felt good and am way behind again) to find any info on what I could ask the doctor for to help with pain and to slow the progression. I found my answer in your email below. I should be praying. Thanks!Next, when I applied for ssdi they said I can make $980/month and not lose it. I am still waiting to see if I am approved. You are in my prayers! CathyMarla Bramer wrote: Tracie, yesterday I had errands to run, so I kept the radio off and asked God to speak to me, well after I while I turned the radio on as too quiet which I like sometimes, anyway, it wasn't until last night as I was falling asleep I heard, what about the Humeria, and I did not once think of that recently, I think I will check into these other things. The reason I have not applied for SSDI is the income limitation, I do OK in Kay and don't want any limitations on me, but who knows? Thank you Tracie On Tue, Apr 15, 2008 at 6:27 AM, tracie feldhaus <tiodaat2001 (AT) yahoo (DOT) com> wrote: SSDI is for when someone that has worked 40 quarters over their lifetime finds themself unemployed because of illness, and has been out of work for 2yrs due to the illness-- then it makes up a portion of YOUR previous income--a whopping 25%. It also enables you to get onto Medicare-- which would be the better coverage for you-- even if you pay out of pocket for 2ndry coverage. So file!! Even if you don't qualify for SSDI, at least you would get the early Medicare. DO NOT confuse Medicare with Medicaid--(the State coverage for low income). Medicare is the FEDERAL insurance and we've paid into it for years with deductions straight off the top of your paychecks. You've also been paying into SSI/SSDI for the reason that if you did end up with an illness prior to getting old-- you had some protection. Now-- for the Remicade thing-- I too went to the place of "is this what she needs" or are these roadblocks coming because it's not the right one. I'm thinking that Humira or Enbrel may be easier places to start-- and they are injections you can give yourself. They are still Biologicals-- And although they target a bit more than just the TNF-a, TNF-b- there are many who are benefiting from them. I know Stinson was on ENBREL and he did very well, but decided he felt more run down the longer he took it- and he didn't like that-- so he decided to quit it. I'd check with your insurance and (didn't they bring up Humira? at the hearing?) They may go for it and it is only a fraction of the cost-- it would be worth it. The other is the cyclosporine (cyclophosphidimide) actually Cytoxan-- and that even low dose is nasty chemo with the heavier side effects of hair loss, nauseau, etc. One thing with the BRMS- is that your hair gets thinner (thicker on the chin... or maybe that's all the testestorone in my house) but you feel like you want to sleep for a few days-- but the rebound is great with energy and vey little pain. My feelings, go with your instincts. We know that it is our Divine Guidance-- so come back to that place. I too, am feeling so very blessed that our paths have crossed!! Love, Tracie Re: Remicade updatethanks , I know there is a reason for this yet another delay, so I am trying hard to what on his will not mine. thank you for the hugs and prayers, Marla On Sat, Apr 12, 2008 at 7:27 PM, Solberg <mary_s777 (AT) yahoo (DOT) com> wrote: Marla, Remember all things in His time. I'd call the company who makes Remicade and see what they tell you to do. There's got to be a doc out there who is in this for the patient and not the money. I will pray that God guides you to this person. Maybe this is just a step that God is doing to lead you to just the right person to give this to you. Keep the faith, girl. My prayers are with you. hugs Marla Bramer <mebramer (AT) gmail (DOT) com> wrote: Well I didn't get the Remicade, we were told by our doctor, and my research that a dose would be between 1600-2300, so we were prepared to pay what we needed as Insurance still denied, well we got there, I told the nurse that we were self pay and she asked if I knew the medication was $16,000, for just the drug not the other $500 or so for the hospital, I even called our local pharmacist and he said there cost was $845 a vial, I would need 3, OK do the the math, that comes to 2535, a little more then we thought, but over $13000 more I don't think so, so the hospital is taking quite a profit on the drugs. Anyway, my doctor was blown out of the water too. I guess it might be possible to get this at a Rheumatalogist office in town?? so anyone paying that for Remicade please let me know. So here we are at the beginning again, well I fought for Methotrexate until I got it, so I guess I have to keep on fighting. I wish you all a very blessed weekend. Marla -- 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV). __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2008 Report Share Posted April 29, 2008 Cathy, Good luck on your appointment, I hope all goes well, well I found out about the Humeria as God suggested he even answered, we got a denial on that this week, so instead of fighting two battles we will continue fighting for the Remicade, we sent a letter to the Drug company for help, and decide to do the level 4 appeal to the insurance company, I hope the drug company will help us out as that might be a better route to take. I find it so important when I get down to be in " the word " doing my bible study, and there I find answers. Of course I don't know what I would do without this wonderful Sarc family, so many answers, so much love and support, what a blessing I have in each and every person here, so Thankful, God Bless, Marla Hi Marla, By the time I am reading this you probably have this all figured out. Two things--one is I think you went to the right source to find out what to take. I wish I would start by asking God instead of struggling to figure it out and then when I can't I go to Him. I was doing that just now. I have a neurology appt. tomorrow and I was frantically trying to read through 300 emails (I haven't felt good and am way behind again) to find any info on what I could ask the doctor for to help with pain and to slow the progression. I found my answer in your email below. I should be praying. Thanks! Next, when I applied for ssdi they said I can make $980/month and not lose it. I am still waiting to see if I am approved. You are in my prayers! CathyMarla Bramer wrote: Tracie, yesterday I had errands to run, so I kept the radio off and asked God to speak to me, well after I while I turned the radio on as too quiet which I like sometimes, anyway, it wasn't until last night as I was falling asleep I heard, what about the Humeria, and I did not once think of that recently, I think I will check into these other things. The reason I have not applied for SSDI is the income limitation, I do OK in Kay and don't want any limitations on me, but who knows? Thank you Tracie SSDI is for when someone that has worked 40 quarters over their lifetime finds themself unemployed because of illness, and has been out of work for 2yrs due to the illness-- then it makes up a portion of YOUR previous income--a whopping 25%. It also enables you to get onto Medicare-- which would be the better coverage for you-- even if you pay out of pocket for 2ndry coverage. So file!! Even if you don't qualify for SSDI, at least you would get the early Medicare. DO NOT confuse Medicare with Medicaid--(the State coverage for low income). Medicare is the FEDERAL insurance and we've paid into it for years with deductions straight off the top of your paychecks. You've also been paying into SSI/SSDI for the reason that if you did end up with an illness prior to getting old-- you had some protection. Now-- for the Remicade thing-- I too went to the place of " is this what she needs " or are these roadblocks coming because it's not the right one. I'm thinking that Humira or Enbrel may be easier places to start-- and they are injections you can give yourself. They are still Biologicals-- And although they target a bit more than just the TNF-a, TNF-b- there are many who are benefiting from them. I know Stinson was on ENBREL and he did very well, but decided he felt more run down the longer he took it- and he didn't like that-- so he decided to quit it. I'd check with your insurance and (didn't they bring up Humira? at the hearing?) They may go for it and it is only a fraction of the cost-- it would be worth it. The other is the cyclosporine (cyclophosphidimide) actually Cytoxan-- and that even low dose is nasty chemo with the heavier side effects of hair loss, nauseau, etc. One thing with the BRMS- is that your hair gets thinner (thicker on the chin... or maybe that's all the testestorone in my house) but you feel like you want to sleep for a few days-- but the rebound is great with energy and vey little pain. My feelings, go with your instincts. We know that it is our Divine Guidance-- so come back to that place. I too, am feeling so very blessed that our paths have crossed!! Love, Tracie Re: Remicade updatethanks , I know there is a reason for this yet another delay, so I am trying hard to what on his will not mine. thank you for the hugs and prayers, Marla Marla, Remember all things in His time. I'd call the company who makes Remicade and see what they tell you to do. There's got to be a doc out there who is in this for the patient and not the money. I will pray that God guides you to this person. Maybe this is just a step that God is doing to lead you to just the right person to give this to you. Keep the faith, girl. My prayers are with you. hugs Marla Bramer wrote: Well I didn't get the Remicade, we were told by our doctor, and my research that a dose would be between 1600-2300, so we were prepared to pay what we needed as Insurance still denied, well we got there, I told the nurse that we were self pay and she asked if I knew the medication was $16,000, for just the drug not the other $500 or so for the hospital, I even called our local pharmacist and he said there cost was $845 a vial, I would need 3, OK do the the math, that comes to 2535, a little more then we thought, but over $13000 more I don't think so, so the hospital is taking quite a profit on the drugs. Anyway, my doctor was blown out of the water too. I guess it might be possible to get this at a Rheumatalogist office in town?? so anyone paying that for Remicade please let me know. So here we are at the beginning again, well I fought for Methotrexate until I got it, so I guess I have to keep on fighting. I wish you all a very blessed weekend. Marla -- 29:11, For I know the plans I have for you, " declares the Lord, " plans to prosper you and not to harm you, plans to give you hope and a future. " If anyone would come after Me, he must deny himself " ( 16:24 NIV). __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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