Re: Anyone familiar with Abatacept drug study for RA

[Guest guest]

Miriam -- I don't have any experience with the drugs you mention other than Enbrel, but I am very sorry to hear you are having such a tough time. My sympathies. Andiempalevsky_bunnylover <mpalevsky@...> wrote:

My name is Miriam and I don't post much but I ALWAYS read the messages on this board.I have been in a very severe RA flare since June. I have been on Enbrel 25mg 3x weekly and MTX for a long time. I also take Prednisone, Topomax (for my skin feeling like its on fire) and Skelaxin because my muscles are all in spasm around the joints. With all of this, my joins are still red, painful and swollen and I have to rely on my husband and kids to do everything for me.Initially, I had relief from Enbrel but its apparent that its no longer working. My rheumy gave me 3 options today. All of them include me stopping the enbrel for a few weeks to get it out of my system. The options are:1. Go into a drug study for Abatacept, a Phase 3, multi center, Open Label study for people with active RA, who have been on a biologic drug for

at least 3 months without an adequate response. This drug is made by Bristol Myers Squibb. The information I was given says that it works different than the other anti-TNF drugs and that it works to control the activity of the cells in the immune system that may be responsible for the signs and symptoms of RA. Is anyone else on this studay or have additional information about it?2. Go on Humira3. Go on RemicadeThe doctor told me to take a day or two to think about it and call him back when I have made my decision. So many of you seem to know so much about RA, that I really wanted to get some educated opinions before making my decision. I appreciate any thoughts or insight you can provide.Thanks,Miriam

[Guest guest]

Only you can make the decision, Miriam, but here is my two cents! Humira,

Enbrel and I think Remicade are all TNF blockers. Not everyone has an

overabundance of TNF that causes inflammation. Perhaps Abatacept will

work on the thing that causes your RA. I know there are other drugs in the

pipeline too. Anyone else know of different clinical trials?

> My name is Miriam and I don't post much but I ALWAYS read the

> messages on this board.

>

> I have been in a very severe RA flare since June. I have been on

> Enbrel 25mg 3x weekly and MTX for a long time. I also take

> Prednisone, Topomax (for my skin feeling like its on fire) and

> Skelaxin because my muscles are all in spasm around the joints.

> With all of this, my joins are still red, painful and swollen and I

> have to rely on my husband and kids to do everything for me.

>

> Initially, I had relief from Enbrel but its apparent that its no

> longer working. My rheumy gave me 3 options today. All of them

> include me stopping the enbrel for a few weeks to get it out of my

> system. The options are:

>

> 1. Go into a drug study for Abatacept, a Phase 3, multi center, Open

> Label study for people with active RA, who have been on a biologic

> drug for at least 3 months without an adequate response. This drug

> is made by Bristol Myers Squibb. The information I was given says

> that it works different than the other anti-TNF drugs and that it

> works to control the activity of the cells in the immune system that

> may be responsible for the signs and symptoms of RA. Is anyone else

> on this studay or have additional information about it?

>

> 2. Go on Humira

>

> 3. Go on Remicade

>

> The doctor told me to take a day or two to think about it and call

> him back when I have made my decision. So many of you seem to know

> so much about RA, that I really wanted to get some educated opinions

> before making my decision. I appreciate any thoughts or insight you

> can provide.

>

> Thanks,

> Miriam

[Guest guest]

Very true -

I think that is the new med my rheumy told me about though and she is on the board of rheumatology so very confident in her opinions. She said the Bristol Meyers drug not yet approved looks very promising.

I've taken Remicade and Enbrel. Remicade worked pretty good but I wanted to go on a self-injectable so started Enbrel. Enbrel didn't seem to work as well so I'm now on Humira and having great success with that. However, I had to get bumped up to once a week shots vs. every 2 weeks to really feel the benefit. This is the best I have felt in 2 years! I'm doing things I wasn't able to 2 years ago as well. I also take Imuran along with it, which most people take something like methotrexate, I can't for other health reasons.

I suggest you might want to find out the cost of each as that may impact your decision depending what kind of insurance you do or do not have. Then try something recommended by your doc, and if you don't get relief, try a different one.

Good luck! <catdelouise@...> wrote:

Only you can make the decision, Miriam, but here is my two cents! Humira, Enbrel and I think Remicade are all TNF blockers. Not everyone has an overabundance of TNF that causes inflammation. Perhaps Abatacept will work on the thing that causes your RA. I know there are other drugs in the pipeline too. Anyone else know of different clinical trials? > My name is Miriam and I don't post much but I ALWAYS read the > messages on this board.> > I have been in a very severe RA flare since June. I have been on > Enbrel 25mg 3x weekly and MTX for a long time. I also take > Prednisone, Topomax (for my skin feeling like its on fire) and > Skelaxin because my

muscles are all in spasm around the joints. > With all of this, my joins are still red, painful and swollen and I > have to rely on my husband and kids to do everything for me.> > Initially, I had relief from Enbrel but its apparent that its no > longer working. My rheumy gave me 3 options today. All of them > include me stopping the enbrel for a few weeks to get it out of my > system. The options are:> > 1. Go into a drug study for Abatacept, a Phase 3, multi center, Open > Label study for people with active RA, who have been on a biologic > drug for at least 3 months without an adequate response. This drug > is made by Bristol Myers Squibb. The information I was given says > that it works different than the other anti-TNF drugs and that it > works to control the activity of the cells in the immune system that > may be responsible for the

signs and symptoms of RA. Is anyone else > on this studay or have additional information about it?> > 2. Go on Humira> > 3. Go on Remicade> > The doctor told me to take a day or two to think about it and call > him back when I have made my decision. So many of you seem to know > so much about RA, that I really wanted to get some educated opinions > before making my decision. I appreciate any thoughts or insight you > can provide.> > Thanks,> Miriam

Start your day with - make it your home page

[Guest guest]

All of the anti-TNF drugs work in slightly different ways so it is possible for one to work when the others do not. However, it might be more likely that a drug that works on a different part of the immune system may be better. Kineret is another biologic but it works on the IL-1 or something like that. On average it is less effective than the TNF drugs but for some people it is the only one that works. Also there are still clinical trials going on with Rituxin that operaties in a still different way. Rituxin is approved for some diseases but not yet approved for RA. I have never heard of Abatacept so I can't help with that.

If your objective is to find out what is helping you then stopping one drug before starting another makes sense. However if your objective is to get relief then you are better to start one drug before you stop the other so that you retain whatever benefits you get from the first drug while your body adjusts to the new drug. It often takes several weeks to months for a drug to be effective so that can be a long time in pain that might not be necessary. If you get help from multiple drugs simultaneously then you can start reducing dose or stopping drugs to see what it is that is working. You don't get the information as fast but you get the relief a lot faster. If your doctor is more interested in information than in your feeling good then I suggest a new doctor.

----- Original Message -----

From: mpalevsky_bunnylover

Rheumatoid Arthritis

Sent: Monday, August 22, 2005 3:18 PM

Subject: Anyone familiar with Abatacept drug study for RA

My name is Miriam and I don't post much but I ALWAYS read the messages on this board.I have been in a very severe RA flare since June. I have been on Enbrel 25mg 3x weekly and MTX for a long time. I also take Prednisone, Topomax (for my skin feeling like its on fire) and Skelaxin because my muscles are all in spasm around the joints. With all of this, my joins are still red, painful and swollen and I have to rely on my husband and kids to do everything for me.Initially, I had relief from Enbrel but its apparent that its no longer working. My rheumy gave me 3 options today. All of them include me stopping the enbrel for a few weeks to get it out of my system. The options are:1. Go into a drug study for Abatacept, a Phase 3, multi center, Open Label study for people with active RA, who have been on a biologic drug for at least 3 months without an adequate response. This drug is made by Bristol Myers Squibb. The information I was given says that it works different than the other anti-TNF drugs and that it works to control the activity of the cells in the immune system that may be responsible for the signs and symptoms of RA. Is anyone else on this studay or have additional information about it?2. Go on Humira3. Go on RemicadeThe doctor told me to take a day or two to think about it and call him back when I have made my decision. So many of you seem to know so much about RA, that I really wanted to get some educated opinions before making my decision. I appreciate any thoughts or insight you can provide.Thanks,Miriam

[Guest guest]

Do you use a 20mg shot a week vs the 40mg

shot? I'm feeling so much better with the Humira. I can't believe what

a difference it makes. I've only noticed stiffness in my hands once

when I woke up around 4am...it went away fast tho. Haven't had any

stiffness in 3 weeks.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Maggie

http://www.4HockeyFans.com

http://www.4FloridaHockey.com

MSN: Maggies1429

AOL: Maggies85

sunshine wrote:

Very true -

I think that is the new med my rheumy told me about though and

she is on the board of rheumatology so very confident in her opinions.

She said the Bristol Meyers drug not yet approved looks very

promising.

I've taken Remicade and Enbrel. Remicade worked pretty good but

I wanted to go on a self-injectable so started Enbrel. Enbrel didn't

seem to work as well so I'm now on Humira and having great success with

that. However, I had to get bumped up to once a week shots vs. every 2

weeks to really feel the benefit. This is the best I have felt in 2

years! I'm doing things I wasn't able to 2 years ago as well. I also

take Imuran along with it, which most people take something like

methotrexate, I can't for other health reasons.

I suggest you might want to find out the cost of each as that

may impact your decision depending what kind of insurance you do or do

not have. Then try something recommended by your doc, and if you don't

get relief, try a different one.

Good luck!

[Guest guest]

Thanks for this information, this is good insight. I am very lucky

that my disability is still paid by the company I worked for and I

am still insured by them. I already called to find out if Humira

and Remicade are covered and they both are with a 20.00 co-pay for a

3 month supply. That is what I pay now for Enbrel for 3x a week. I

feel so bad when I read the stories of what so many people go

through with no insurance of really poor coverage. Thanksfully,

this isn't a factor in my decision.

Miriam

> > My name is Miriam and I don't post much but I ALWAYS read the

> > messages on this board.

> >

> > I have been in a very severe RA flare since June. I have been

on

> > Enbrel 25mg 3x weekly and MTX for a long time. I also take

> > Prednisone, Topomax (for my skin feeling like its on fire) and

> > Skelaxin because my muscles are all in spasm around the joints.

> > With all of this, my joins are still red, painful and swollen

and I

> > have to rely on my husband and kids to do everything for me.

> >

> > Initially, I had relief from Enbrel but its apparent that its no

> > longer working. My rheumy gave me 3 options today. All of them

> > include me stopping the enbrel for a few weeks to get it out of

my

> > system. The options are:

> >

> > 1. Go into a drug study for Abatacept, a Phase 3, multi center,

Open

> > Label study for people with active RA, who have been on a

biologic

> > drug for at least 3 months without an adequate response. This

drug

> > is made by Bristol Myers Squibb. The information I was given

says

> > that it works different than the other anti-TNF drugs and that

it

> > works to control the activity of the cells in the immune system

that

> > may be responsible for the signs and symptoms of RA. Is anyone

else

> > on this studay or have additional information about it?

> >

> > 2. Go on Humira

> >

> > 3. Go on Remicade

> >

> > The doctor told me to take a day or two to think about it and

call

> > him back when I have made my decision. So many of you seem to

know

> > so much about RA, that I really wanted to get some educated

opinions

> > before making my decision. I appreciate any thoughts or insight

you

> > can provide.

> >

> > Thanks,

> > Miriam

>

>

>

>

>

[Guest guest]

I felt better the next day. My RD and nurse

said that they get a lot of people who come in for their next checkup

and say they felt better within 2 weeks...some feel it as soon as the

next day like I did. The day after my first shot I had no more

stiffness and a lot less pain in the hands. The nurse said that people

feel relief in their hands first, usually. I guess everyone varies tho.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Maggie

http://www.4HockeyFans.com

http://www.4FloridaHockey.com

MSN: Maggies1429

AOL: Maggies85

mpalevsky_bunnylover wrote:

Thanks Sam. They did tell me that the Humira would take around 3 shots before I would start to feel any relief.

[Guest guest]

No I'm on the 40mg once a week. Still had a high inflammation rate so the doc upped me to once a week. So far it has been great! I'm planning on going back in to have the inflammation rate checked again to compare against what it was 3 months ago. I'm sure it is a lot better.

Maggie <meshouse@...> wrote:

Do you use a 20mg shot a week vs the 40mg shot? I'm feeling so much better with the Humira. I can't believe what a difference it makes. I've only noticed stiffness in my hands once when I woke up around 4am...it went away fast tho. Haven't had any stiffness in 3 weeks.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Maggie

http://www.4HockeyFans.com

http://www.4FloridaHockey.com

MSN: Maggies1429

AOL: Maggies85sunshine wrote:

Very true -

I think that is the new med my rheumy told me about though and she is on the board of rheumatology so very confident in her opinions. She said the Bristol Meyers drug not yet approved looks very promising.

I've taken Remicade and Enbrel. Remicade worked pretty good but I wanted to go on a self-injectable so started Enbrel. Enbrel didn't seem to work as well so I'm now on Humira and having great success with that. However, I had to get bumped up to once a week shots vs. every 2 weeks to really feel the benefit. This is the best I have felt in 2 years! I'm doing things I wasn't able to 2 years ago as well. I also take Imuran along with it, which most people take something like methotrexate, I can't for other health reasons.

I suggest you might want to find out the cost of each as that may impact your decision depending what kind of insurance you do or do not have. Then try something recommended by your doc, and if you don't get relief, try a different one.

Good luck!

Start your day with - make it your home page

[Guest guest]

Hi Miriam, I think I would prefer the medications that have been out for a

while over the new study since we have no idea what side effects might show

up with the new meds. They all have bad side effects but at least these

have made it through the first few years without being pulled off the

market.

Dorey

www.LivingWithRheumatoidArthritis.com

----- Original Message -----

From: " mpalevsky_bunnylover " <mpalevsky@...>

<Rheumatoid Arthritis >

Sent: Monday, August 22, 2005 8:05 PM

Subject: Re: Anyone familiar with Abatacept drug

study for RA

> Thanks for this information, this is good insight. I am very lucky

> that my disability is still paid by the company I worked for and I

> am still insured by them. I already called to find out if Humira

> and Remicade are covered and they both are with a 20.00 co-pay for a

> 3 month supply. That is what I pay now for Enbrel for 3x a week. I

> feel so bad when I read the stories of what so many people go

> through with no insurance of really poor coverage. Thanksfully,

> this isn't a factor in my decision.

>

> Miriam

>

>

>> > My name is Miriam and I don't post much but I ALWAYS read the

>> > messages on this board.

>> >

>> > I have been in a very severe RA flare since June. I have been

> on

>> > Enbrel 25mg 3x weekly and MTX for a long time. I also take

>> > Prednisone, Topomax (for my skin feeling like its on fire) and

>> > Skelaxin because my muscles are all in spasm around the joints.

>> > With all of this, my joins are still red, painful and swollen

> and I

>> > have to rely on my husband and kids to do everything for me.

>> >

>> > Initially, I had relief from Enbrel but its apparent that its no

>> > longer working. My rheumy gave me 3 options today. All of them

>> > include me stopping the enbrel for a few weeks to get it out of

> my

>> > system. The options are:

>> >

>> > 1. Go into a drug study for Abatacept, a Phase 3, multi center,

> Open

>> > Label study for people with active RA, who have been on a

> biologic

>> > drug for at least 3 months without an adequate response. This

> drug

>> > is made by Bristol Myers Squibb. The information I was given

> says

>> > that it works different than the other anti-TNF drugs and that

> it

>> > works to control the activity of the cells in the immune system

> that

>> > may be responsible for the signs and symptoms of RA. Is anyone

> else

>> > on this studay or have additional information about it?

>> >

>> > 2. Go on Humira

>> >

>> > 3. Go on Remicade

>> >

>> > The doctor told me to take a day or two to think about it and

> call

>> > him back when I have made my decision. So many of you seem to

> know

>> > so much about RA, that I really wanted to get some educated

> opinions

>> > before making my decision. I appreciate any thoughts or insight

> you

>> > can provide.

>> >

>> > Thanks,

>> > Miriam

>>

>>

>>

>>

>>