Re: Re: Methotrexate, Remicaide and Lymphoma

[Guest guest]

Maybe I just don't know anything, but doesn't this seem excessive? I am under

the understanding that you really shouldn't take more than 25 mg of MTX a week

and that infusions are to be every 6-8 weeks. Am I wrong? I am on MTX 25mg a

week and have Remicade infusion of 3mg every 8 weeks. While this is very scary,

the Remicade is the only thing that is giving me my life back. I watched my

grandmother become completely crippled, and had little to no use of her hands or

feet from RA. The prospect of that scares me to death. I can already see some

curling in my toes. My doctor makes it sound like anymore MTX than what I am

taking would be dangerous. It is all such a balancing act. As far as the

weight discussion goes, I lost 70 pounds about 3 years ago *still working on

that last 20* and it was AFTER that that my symptoms appeared. So, while I am

still trying to lose that last bit of weight, I don't expect it to really help

my RA. Before my RA progressed I was pretty active, too. I walked 2-3 miles

every day, and did strength training and aerobics on a regular basis. Now I am

just lucky to get through the day. Because of the Remicade I am able to finally

open my own water bottles again *most of the time*, and I am trying to get my

house back together and am considering trying to mow the lawn again. I haven't

mowed it in several months because it sends me right into a flare. Good thing

it is winter! I am able to function in the evenings most days after working,

though regrettably this will probably be my last year teaching.. So while it

may too big of a risk for some, I am not ready to give up yet. I would have

been in a wheelchair within a year or two without the Remicade, so for me it is

worth it.

Semalee

G'Day to everyone

It's been awhile since I visited.Wanted to say hello to everyone..Hi

Tawny..I was reading the post on the woman who has lymphoma.That

scares the heck out of me.It is something that sits in the back of

my mind,and when I hear news like that,it just confirms all the more

how dangerous these meds are and how serious this diease is.Just by

having RA our chanches for getting lymphoma are increased.My prayers

will include all.All this a side.Besides having RA.I also have

fibromyalgia and myofascial pain.How many of you experience extreme

fatique everyday.I usually can get up in the morning but by 1-1:30

pm I am in bed.Some days I can't even get out of bed.Is this pretty

much the way it is for all of you? Nea

[Guest guest]

Maybe I just don't know anything, but doesn't this seem excessive? I am under

the understanding that you really shouldn't take more than 25 mg of MTX a week

and that infusions are to be every 6-8 weeks. Am I wrong? I am on MTX 25mg a

week and have Remicade infusion of 3mg every 8 weeks. While this is very scary,

the Remicade is the only thing that is giving me my life back. I watched my

grandmother become completely crippled, and had little to no use of her hands or

feet from RA. The prospect of that scares me to death. I can already see some

curling in my toes. My doctor makes it sound like anymore MTX than what I am

taking would be dangerous. It is all such a balancing act. As far as the

weight discussion goes, I lost 70 pounds about 3 years ago *still working on

that last 20* and it was AFTER that that my symptoms appeared. So, while I am

still trying to lose that last bit of weight, I don't expect it to really help

my RA. Before my RA progressed I was pretty active, too. I walked 2-3 miles

every day, and did strength training and aerobics on a regular basis. Now I am

just lucky to get through the day. Because of the Remicade I am able to finally

open my own water bottles again *most of the time*, and I am trying to get my

house back together and am considering trying to mow the lawn again. I haven't

mowed it in several months because it sends me right into a flare. Good thing

it is winter! I am able to function in the evenings most days after working,

though regrettably this will probably be my last year teaching.. So while it

may too big of a risk for some, I am not ready to give up yet. I would have

been in a wheelchair within a year or two without the Remicade, so for me it is

worth it.

Semalee

G'Day to everyone

It's been awhile since I visited.Wanted to say hello to everyone..Hi

Tawny..I was reading the post on the woman who has lymphoma.That

scares the heck out of me.It is something that sits in the back of

my mind,and when I hear news like that,it just confirms all the more

how dangerous these meds are and how serious this diease is.Just by

having RA our chanches for getting lymphoma are increased.My prayers

will include all.All this a side.Besides having RA.I also have

fibromyalgia and myofascial pain.How many of you experience extreme

fatique everyday.I usually can get up in the morning but by 1-1:30

pm I am in bed.Some days I can't even get out of bed.Is this pretty

much the way it is for all of you? Nea

[Guest guest]

Toni,

It sound more like improper prescribing rather than a bad drug combo.

The combination of Remicade and MTX is a good combination, but the

high dose of MTX isn't standard RA treatment, nor is having the

Remicade infusions so often.

DOSAGE AND ADMINISTRATION

Rheumatoid Arthritis

The recommended dose of REMICADE is 3 mg/kg given as an intravenous

infusion followed with additional similar doses at 2 and 6 weeks after

the first infusion then every 8 weeks thereafter. REMICADE should be

given in combination with methotrexate. For patients who have an

incomplete response, consideration may be given to adjusting the dose

up to 10 mg/kg or treating as often as every 4 weeks.

Crohn's Disease or Fistulizing Crohn's Disease

The recommended dose of REMICADE is 5 mg/kg given as an induction

regimen at 0, 2 and 6 weeks followed by a maintenance regimen of 5

mg/kg every 8 weeks thereafter for the treatment of moderately to

severely active Crohn's disease or fistulizing disease. For patients

who respond and then lose their response, consideration may be given

to treatment with 10 mg/kg. Patients who do not respond by week 14 are

unlikely to respond with continued dosing and consideration should be

given to discontinue REMICADE in these patients.

http://www.drugs.com/PDR/Remicade_for_IV_Injection.html

a

On Sun, 2 Jan 2005 21:37:55 EST, aclavern33@... <aclavern33@...> wrote:

>

>

> I talked with the lady on the other group I am a member of and she was on

> Methotrexate for three years total. The last year she was on

> remicaide/methotrexate combo. She was getting remicaide every 3 weeks and

taking 10 tablets

> if methotrexate weekly. Pretty sad that she will have to undergo serious

> surgery, chemo and possible radiation therapy all because of a bad drug

combo.

>

> I am so glad I stopped the Enbrel and Methotrexate combo. I would hate to

> have to face such serious treatment.

>

> Toni

>

[Guest guest]

Toni,

It sound more like improper prescribing rather than a bad drug combo.

The combination of Remicade and MTX is a good combination, but the

high dose of MTX isn't standard RA treatment, nor is having the

Remicade infusions so often.

DOSAGE AND ADMINISTRATION

Rheumatoid Arthritis

The recommended dose of REMICADE is 3 mg/kg given as an intravenous

infusion followed with additional similar doses at 2 and 6 weeks after

the first infusion then every 8 weeks thereafter. REMICADE should be

given in combination with methotrexate. For patients who have an

incomplete response, consideration may be given to adjusting the dose

up to 10 mg/kg or treating as often as every 4 weeks.

Crohn's Disease or Fistulizing Crohn's Disease

The recommended dose of REMICADE is 5 mg/kg given as an induction

regimen at 0, 2 and 6 weeks followed by a maintenance regimen of 5

mg/kg every 8 weeks thereafter for the treatment of moderately to

severely active Crohn's disease or fistulizing disease. For patients

who respond and then lose their response, consideration may be given

to treatment with 10 mg/kg. Patients who do not respond by week 14 are

unlikely to respond with continued dosing and consideration should be

given to discontinue REMICADE in these patients.

http://www.drugs.com/PDR/Remicade_for_IV_Injection.html

a

On Sun, 2 Jan 2005 21:37:55 EST, aclavern33@... <aclavern33@...> wrote:

>

>

> I talked with the lady on the other group I am a member of and she was on

> Methotrexate for three years total. The last year she was on

> remicaide/methotrexate combo. She was getting remicaide every 3 weeks and

taking 10 tablets

> if methotrexate weekly. Pretty sad that she will have to undergo serious

> surgery, chemo and possible radiation therapy all because of a bad drug

combo.

>

> I am so glad I stopped the Enbrel and Methotrexate combo. I would hate to

> have to face such serious treatment.

>

> Toni

>

[Guest guest]

Semalee,

I believe the doses are excessive and dangerous. While every drug we

take has it's side effects, the benefits outweigh the risks for most

of us. I know there are serious POTENTIAL side effects with the

Enbrel that I take, but I'd be in a wheelchair without it. I am aware

of the risks and willing to take them. I'm glad you've found

something that helps so much and hope you have continued sucess with

it.

a

On Mon, 3 Jan 2005 08:18:46 -0600, Semalee <Semalee@...> wrote:

>

>

> Maybe I just don't know anything, but doesn't this seem excessive? I am under

the understanding that you really shouldn't take more than 25 mg of MTX a week

and that infusions are to be every 6-8 weeks. Am I wrong? I am on MTX 25mg a

week and have Remicade infusion of 3mg every 8 weeks. While this is very scary,

the Remicade is the only thing that is giving me my life back. I watched my

grandmother become completely crippled, and had little to no use of her hands or

feet from RA. The prospect of that scares me to death. I can already see some

curling in my toes. My doctor makes it sound like anymore MTX than what I am

taking would be dangerous. It is all such a balancing act. As far as the

weight discussion goes, I lost 70 pounds about 3 years ago *still working on

that last 20* and it was AFTER that that my symptoms appeared. So, while I am

still trying to lose that last bit of weight, I don't expect it to really help

my RA. Before my RA progressed I was pretty active, too. I walked 2-3 miles

every day, and did strength training and aerobics on a regular basis. Now I am

just lucky to get through the day. Because of the Remicade I am able to finally

open my own water bottles again *most of the time*, and I am trying to get my

house back together and am considering trying to mow the lawn again. I haven't

mowed it in several months because it sends me right into a flare. Good thing

it is winter! I am able to function in the evenings most days after working,

though regrettably this will probably be my last year teaching.. So while it

may too big of a risk for some, I am not ready to give up yet. I would have

been in a wheelchair within a year or two without the Remicade, so for me it is

worth it.

>

> Semalee

> G'Day to everyone

>

> It's been awhile since I visited.Wanted to say hello to everyone..Hi

> Tawny..I was reading the post on the woman who has lymphoma.That

> scares the heck out of me.It is something that sits in the back of

> my mind,and when I hear news like that,it just confirms all the more

> how dangerous these meds are and how serious this diease is.Just by

> having RA our chanches for getting lymphoma are increased.My prayers

> will include all.All this a side.Besides having RA.I also have

> fibromyalgia and myofascial pain.How many of you experience extreme

> fatique everyday.I usually can get up in the morning but by 1-1:30

> pm I am in bed.Some days I can't even get out of bed.Is this pretty

> much the way it is for all of you? Nea

>

>

[Guest guest]

Semalee,

I believe the doses are excessive and dangerous. While every drug we

take has it's side effects, the benefits outweigh the risks for most

of us. I know there are serious POTENTIAL side effects with the

Enbrel that I take, but I'd be in a wheelchair without it. I am aware

of the risks and willing to take them. I'm glad you've found

something that helps so much and hope you have continued sucess with

it.

a

On Mon, 3 Jan 2005 08:18:46 -0600, Semalee <Semalee@...> wrote:

>

>

> Maybe I just don't know anything, but doesn't this seem excessive? I am under

the understanding that you really shouldn't take more than 25 mg of MTX a week

and that infusions are to be every 6-8 weeks. Am I wrong? I am on MTX 25mg a

week and have Remicade infusion of 3mg every 8 weeks. While this is very scary,

the Remicade is the only thing that is giving me my life back. I watched my

grandmother become completely crippled, and had little to no use of her hands or

feet from RA. The prospect of that scares me to death. I can already see some

curling in my toes. My doctor makes it sound like anymore MTX than what I am

taking would be dangerous. It is all such a balancing act. As far as the

weight discussion goes, I lost 70 pounds about 3 years ago *still working on

that last 20* and it was AFTER that that my symptoms appeared. So, while I am

still trying to lose that last bit of weight, I don't expect it to really help

my RA. Before my RA progressed I was pretty active, too. I walked 2-3 miles

every day, and did strength training and aerobics on a regular basis. Now I am

just lucky to get through the day. Because of the Remicade I am able to finally

open my own water bottles again *most of the time*, and I am trying to get my

house back together and am considering trying to mow the lawn again. I haven't

mowed it in several months because it sends me right into a flare. Good thing

it is winter! I am able to function in the evenings most days after working,

though regrettably this will probably be my last year teaching.. So while it

may too big of a risk for some, I am not ready to give up yet. I would have

been in a wheelchair within a year or two without the Remicade, so for me it is

worth it.

>

> Semalee

> G'Day to everyone

>

> It's been awhile since I visited.Wanted to say hello to everyone..Hi

> Tawny..I was reading the post on the woman who has lymphoma.That

> scares the heck out of me.It is something that sits in the back of

> my mind,and when I hear news like that,it just confirms all the more

> how dangerous these meds are and how serious this diease is.Just by

> having RA our chanches for getting lymphoma are increased.My prayers

> will include all.All this a side.Besides having RA.I also have

> fibromyalgia and myofascial pain.How many of you experience extreme

> fatique everyday.I usually can get up in the morning but by 1-1:30

> pm I am in bed.Some days I can't even get out of bed.Is this pretty

> much the way it is for all of you? Nea

>

>

[Guest guest]

Thanks, a!

That is pretty much the way I feel. I joined this list when he started talking

about " more aggressive treatments " , because, frankly, I was scared to death!!

But being a part of this list puts some of my fears at ease because I feel a lot

more educated, and more in control of my own treatment. I have learned from

this list that my doc does know what he is doing, even if I don't like what he

is telling me LOL!! I am glad the Enbrel is working for you, I think if I ever

have to go off of the remicade I would try the Enbrel next because I don't want

to deal with the sting from Humira... Anyway, thanks for everything, most

especially this list!

Semalee

G'Day to everyone

>

> It's been awhile since I visited.Wanted to say hello to everyone..Hi

> Tawny..I was reading the post on the woman who has lymphoma.That

> scares the heck out of me.It is something that sits in the back of

> my mind,and when I hear news like that,it just confirms all the more

> how dangerous these meds are and how serious this diease is.Just by

> having RA our chanches for getting lymphoma are increased.My prayers

> will include all.All this a side.Besides having RA.I also have

> fibromyalgia and myofascial pain.How many of you experience extreme

> fatique everyday.I usually can get up in the morning but by 1-1:30

> pm I am in bed.Some days I can't even get out of bed.Is this pretty

> much the way it is for all of you? Nea

>

>

[Guest guest]

Thanks, a!

That is pretty much the way I feel. I joined this list when he started talking

about " more aggressive treatments " , because, frankly, I was scared to death!!

But being a part of this list puts some of my fears at ease because I feel a lot

more educated, and more in control of my own treatment. I have learned from

this list that my doc does know what he is doing, even if I don't like what he

is telling me LOL!! I am glad the Enbrel is working for you, I think if I ever

have to go off of the remicade I would try the Enbrel next because I don't want

to deal with the sting from Humira... Anyway, thanks for everything, most

especially this list!

Semalee

G'Day to everyone

>

> It's been awhile since I visited.Wanted to say hello to everyone..Hi

> Tawny..I was reading the post on the woman who has lymphoma.That

> scares the heck out of me.It is something that sits in the back of

> my mind,and when I hear news like that,it just confirms all the more

> how dangerous these meds are and how serious this diease is.Just by

> having RA our chanches for getting lymphoma are increased.My prayers

> will include all.All this a side.Besides having RA.I also have

> fibromyalgia and myofascial pain.How many of you experience extreme

> fatique everyday.I usually can get up in the morning but by 1-1:30

> pm I am in bed.Some days I can't even get out of bed.Is this pretty

> much the way it is for all of you? Nea

>

>

[Guest guest]

Semalee,

I've been scared of side effects too. Who wouldn't be when you read

the prescribing information? But we have to realize that because a

side effect is listed, it doesn't mean we will have that side effect.

The manufacturers must list side effects even if they are rare. I've

stopped my meds several times over my 25+ years with this disease

because of fear of side effects. I've tried alternatives, diet and

anything else I could, just to avoid the meds. Now when I look at the

damage on an x-ray, I fear the disease more than the potential drug

side effects. We must educate ourselves and decide for ourselves if

we want to risk the side effects for possible drug remission.

a

On Mon, 3 Jan 2005 08:54:25 -0600, Semalee <Semalee@...> wrote:

>

>

> Thanks, a!

> That is pretty much the way I feel. I joined this list when he started

talking about " more aggressive treatments " , because, frankly, I was scared to

death!! But being a part of this list puts some of my fears at ease because I

feel a lot more educated, and more in control of my own treatment. I have

learned from this list that my doc does know what he is doing, even if I don't

like what he is telling me LOL!! I am glad the Enbrel is working for you, I

think if I ever have to go off of the remicade I would try the Enbrel next

because I don't want to deal with the sting from Humira... Anyway, thanks for

everything, most especially this list!

> Semalee

[Guest guest]

Semalee,

I've been scared of side effects too. Who wouldn't be when you read

the prescribing information? But we have to realize that because a

side effect is listed, it doesn't mean we will have that side effect.

The manufacturers must list side effects even if they are rare. I've

stopped my meds several times over my 25+ years with this disease

because of fear of side effects. I've tried alternatives, diet and

anything else I could, just to avoid the meds. Now when I look at the

damage on an x-ray, I fear the disease more than the potential drug

side effects. We must educate ourselves and decide for ourselves if

we want to risk the side effects for possible drug remission.

a

On Mon, 3 Jan 2005 08:54:25 -0600, Semalee <Semalee@...> wrote:

>

>

> Thanks, a!

> That is pretty much the way I feel. I joined this list when he started

talking about " more aggressive treatments " , because, frankly, I was scared to

death!! But being a part of this list puts some of my fears at ease because I

feel a lot more educated, and more in control of my own treatment. I have

learned from this list that my doc does know what he is doing, even if I don't

like what he is telling me LOL!! I am glad the Enbrel is working for you, I

think if I ever have to go off of the remicade I would try the Enbrel next

because I don't want to deal with the sting from Humira... Anyway, thanks for

everything, most especially this list!

> Semalee

[Guest guest]

Semalee,

If you ever have to switch to Enbrel I have been told DO NOT go the the once

weekly 50mg pre-mixed injections. They hurt like heck cause now they also

have preservative in it like Humira and the needles are dull. I am on quite a

few lists and many of the members have returned the 50mg pre-mixed and gone

back to 25mg powder vials cause it hurts so bad. Many have said far worst

than even humira hurt!

I was on the 25mg Enbrel twice a week...but I stopped it...to much

controversy and problems with all these new meds. I will wait until there is

more

usage data. My symtoms are almost none-existant anyway so I don't think I need

all this medication. I was way over medicated before.

Toni

In a message dated 1/3/2005 12:13:01 PM Central Standard Time,

writes:

Date: Mon, 3 Jan 2005 08:54:25 -0600

From: " Semalee " <Semalee@...>

Subject: Re: Re: Methotrexate, Remicaide and Lymphoma

Thanks, a!

That is pretty much the way I feel. I joined this list when he started

talking about " more aggressive treatments " , because, frankly, I was scared to

death!! But being a part of this list puts some of my fears at ease because I

feel a lot more educated, and more in control of my own treatment. I have

learned from this list that my doc does know what he is doing, even if I don't

like what he is telling me LOL!! I am glad the Enbrel is working for you, I

think if I ever have to go off of the remicade I would try the Enbrel next

because I don't want to deal with the sting from Humira... Anyway, thanks for

everything, most especially this list!

Semalee

[Guest guest]

Semalee,

If you ever have to switch to Enbrel I have been told DO NOT go the the once

weekly 50mg pre-mixed injections. They hurt like heck cause now they also

have preservative in it like Humira and the needles are dull. I am on quite a

few lists and many of the members have returned the 50mg pre-mixed and gone

back to 25mg powder vials cause it hurts so bad. Many have said far worst

than even humira hurt!

I was on the 25mg Enbrel twice a week...but I stopped it...to much

controversy and problems with all these new meds. I will wait until there is

more

usage data. My symtoms are almost none-existant anyway so I don't think I need

all this medication. I was way over medicated before.

Toni

In a message dated 1/3/2005 12:13:01 PM Central Standard Time,

writes:

Date: Mon, 3 Jan 2005 08:54:25 -0600

From: " Semalee " <Semalee@...>

Subject: Re: Re: Methotrexate, Remicaide and Lymphoma

Thanks, a!

That is pretty much the way I feel. I joined this list when he started

talking about " more aggressive treatments " , because, frankly, I was scared to

death!! But being a part of this list puts some of my fears at ease because I

feel a lot more educated, and more in control of my own treatment. I have

learned from this list that my doc does know what he is doing, even if I don't

like what he is telling me LOL!! I am glad the Enbrel is working for you, I

think if I ever have to go off of the remicade I would try the Enbrel next

because I don't want to deal with the sting from Humira... Anyway, thanks for

everything, most especially this list!

Semalee

[Guest guest]

I have had just one injection of the 50mg Enbrel. I found that it did

not sting, although I was afraid it might. The needle, however, did

seem dull. It hasn't been a week yet, so I don't know if it's going to

last that long or not.

Sue

On Monday, January 3, 2005, at 09:32 PM, aclavern33@... wrote:

>

> If you ever have to switch to Enbrel I have been told DO NOT go the

> the once

> weekly 50mg pre-mixed injections. They hurt like heck cause now they

> also

> have preservative in it like Humira and the needles are dull.

>

[Guest guest]

I have had just one injection of the 50mg Enbrel. I found that it did

not sting, although I was afraid it might. The needle, however, did

seem dull. It hasn't been a week yet, so I don't know if it's going to

last that long or not.

Sue

On Monday, January 3, 2005, at 09:32 PM, aclavern33@... wrote:

>

> If you ever have to switch to Enbrel I have been told DO NOT go the

> the once

> weekly 50mg pre-mixed injections. They hurt like heck cause now they

> also

> have preservative in it like Humira and the needles are dull.

>