Re: Remicade update

[Guest guest]

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).

__________________________________________________

[Guest guest]

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). ____________ _________ _________ _________ _________ __

[Guest guest]

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). ____________ _________ _________ _________ _________ __

[Guest guest]

Hi Marla, Thanks! I agree. As much as I physically don't feel like it, I have started going back to our womens Bible study group and it is wonderful. Some days I feel too tired to hold my Bible or read, so I think I am going to get a Bible on tape. I listen to other teaching CD's and I love them. I will pray that God opens the doors for you to get whatever medicine you are supposed to be on. Have a great day! CathyMarla Bramer wrote: 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 On Tue, Apr 29, 2008 at 7:41 PM, Cathy Borden <csamom3 (AT) yahoo (DOT) com> wrote: 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 <mebramer (AT) gmail (DOT) com> 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). __________________________________________________

[Guest guest]

Thank you Cathy, I know God will let me know soon, and I trust in God. Marla

Hi Marla, Thanks! I agree. As much as I physically don't feel like it, I have started going back to our womens Bible study group and it is wonderful. Some days I feel too tired to hold my Bible or read, so I think I am going to get a Bible on tape. I listen to other teaching CD's and I love them. I will pray that God opens the doors for you to get whatever medicine you are supposed to be on.

Have a great day! CathyMarla Bramer wrote:

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).

__________________________________________________