Remicade

[Guest guest]

I was told that my remicade costs between $8000-$10,000 an infushion. I have

my next one on the 15th so will ask again. thank God I only pay a co-pay of

$10. My husband is considering a job change, but we need to look at their

medical benefits first, I wonder if my Ra would be excluded. It's scary to

think about my future medical needs, I'm only 38.

Barb in CA---

[Guest guest]

Me Mom ,

That is insane! I hope the insurance company does an investigation.

a

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

From: Ruf-Caimi <ruf-caimi@...>

< >

Sent: Monday, February 05, 2001 6:12 AM

Subject: [ ] remicade

> Rainy,

> Hold on to your hat, I just called Personal Choice. Each infusion I

> received of remicade the insurance company paid $20,500.83. Is that

> unbelievable or what!!!!!!!!! I ask the man to make sure and he did.

Even

> he couldn't believe what it cost. I told him I guess the insurance

company

> will be happy if I can't take that drug. I will know on Wed., if I will

be

> doing it again. But it doesn't look like it will be happening.

> I think the Candle Day is wonderful. What a perfect day to do this. I

> always look forward to our candle day, it is a nice time.

> Have a good day after get over the shock.

> Me Mom

>

[Guest guest]

a,

Isn't that terrible, I couldn't believe the man when he told me. I always

get break downs of what is paid out with my insurance. On the remicade I

never did, maybe it was the cost.

How you are having a good day. We got a lot of snow, that they said we

wouldn't get. When I take my daughter to school is usually takes 20

minutes, getting home today took 1 1/2 hours. You just couldn' t get up

the hills.

Me Mom

----------

> From: a <aA@...>

>

> Subject: Re: [ ] remicade

> Date: Monday, February 05, 2001 1:00 PM

>

> Me Mom ,

> That is insane! I hope the insurance company does an investigation.

> a

>

> ----- Original Message -----

> From: Ruf-Caimi <ruf-caimi@...>

> < >

> Sent: Monday, February 05, 2001 6:12 AM

> Subject: [ ] remicade

>

>

> > Rainy,

> > Hold on to your hat, I just called Personal Choice. Each infusion I

> > received of remicade the insurance company paid $20,500.83. Is that

> > unbelievable or what!!!!!!!!! I ask the man to make sure and he did.

> Even

> > he couldn't believe what it cost. I told him I guess the insurance

> company

> > will be happy if I can't take that drug. I will know on Wed., if I

will

> be

> > doing it again. But it doesn't look like it will be happening.

> > I think the Candle Day is wonderful. What a perfect day to do this. I

> > always look forward to our candle day, it is a nice time.

> > Have a good day after get over the shock.

> > Me Mom

> >

>

>

>

>

> Chat room: chat/

> Web pages for our group: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Change subscription options:

[Guest guest]

Me Mom ,

I saw how bad it was on the news. We're lucky that we got almost all rain.

By the time is changed to snow, the storm passed through. The weather

forecasters must have been on vacation this time!

The snow won't last long this time since it is getting so warm.

Thank goodness spring is around the corner. This has been a hard winter.

hugs,

a

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

From: Ruf-Caimi <ruf-caimi@...>

< >

Sent: Monday, February 05, 2001 4:44 PM

Subject: Re: [ ] remicade

> a,

> Isn't that terrible, I couldn't believe the man when he told me. I always

> get break downs of what is paid out with my insurance. On the remicade I

> never did, maybe it was the cost.

> How you are having a good day. We got a lot of snow, that they said we

> wouldn't get. When I take my daughter to school is usually takes 20

> minutes, getting home today took 1 1/2 hours. You just couldn' t get up

> the hills.

> Me Mom

>

[Guest guest]

Barb,

In my state, group insurances can't deny payment for preexisting conditions.

If I tried to get a private policy, there would be a 2 year wait before they

paid. If my husband changed jobs and was enrolled in a new group, benefits

begin immediately. We could stay on COBRA if the new job had no insurance.

When you get COBRA benefits, you can stay on the same insurance that you had

from the job for 18 months. The premium is whatever the company paid for

it. I don't know if the rules are the same from state to state, but it

may be worth looking into.

a

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

From: Kendall <bbkendall@...>

< >

Sent: Sunday, February 04, 2001 8:01 PM

Subject: Re: [ ] remicade

> I was told that my remicade costs between $8000-$10,000 an infushion. I

have

> my next one on the 15th so will ask again. thank God I only pay a co-pay

of

> $10. My husband is considering a job change, but we need to look at their

> medical benefits first, I wonder if my Ra would be excluded. It's scary to

> think about my future medical needs, I'm only 38.

>

> Barb in CA---

>

>

>

> Chat room: chat/

> Web pages for our group: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Change subscription options:

>

[Guest guest]

Hi everyone. I am back. I was on the list months ago, but had to drop

out because of time constraints. I have just been approved for three

infusions of Remicade and wanted to know how others on the list that are

on Remicade are finding it. Does it help? Side effects?

Jenna

A Gift of Blood - dark fantasy

The Guardians of Glede - Books 1-6 now available - fantasy adventure

Homepage: www.geocities.com/jennakayfrancis

[Guest guest]

Happy day! So glad to see you back here, Jenna. I've missed you and wondered

what happened to you.

I can't comment on Remicade from personal experience, but I'm sure some

members will be happy to offer their thoughts on it (Rainy Sue, where are

you???).

When will you start it? What are your current meds?

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

From: " JennaKay Francis " <triskelion@...>

< >

Sent: Tuesday, April 10, 2001 12:01 PM

Subject: Re: [ ] Remicade

> Hi everyone. I am back. I was on the list months ago, but had to drop

> out because of time constraints. I have just been approved for three

> infusions of Remicade and wanted to know how others on the list that are

> on Remicade are finding it. Does it help? Side effects?

>

> Jenna

[Guest guest]

Jenna,

Hi welcome back. I'm the list Remicade flunky. Don't let that upset you

though I pretty much flunk all meds. I had 3 infusions and had no results at

all. My RD told me I was his 5 patient on it and at the time the only one it

didn't help, he finally found some company for me, cause now he has 2 of us

that it didn't help.

Rainey Sue is the resident expert on it. I'm behind on my e-mail so if she

has already posted about this I'm sorry. She has been doing very good on it.

She says it gave her, her life back. I'm hoping it will do the same for

you. Tery - FL

[Guest guest]

Jenna,

Rainy Sue has been feeling so good after her last infusion that she has been

cleaning and trying to live a normal live a little bit. When she gets closer

to the next infusion she starts to hurt alot and if i remember correctly she

said she was gonna see if they could do the treatment like a week earlier

then the last time. I think that last week before her last treatment really

took its toll on her.

I sure hope it is your wonder drug. Glad to see you back.

shelly

[Guest guest]

i haven't seen rainy sue this week, anyone else??

kathy

[Guest guest]

Hi ,

Sheesh! Just when I decide to dip my toes back into the world of email

lists, my ISP decides to sextuple my monthly rate!! Yes, 6 times what

I'm now paying. Needless to say, I am cancelling with them and moving on

to someone else.

Anyway, I am still taking methotrexate and prednisone. I tried Vioxx and

while it didn't bother my BP, which is horribly low usually, it did a

number on my stomach! So, I had to quit that. Then I tried Arava. That

was when my hair was falling out - remember? I was afraid that I was

going to go bald. I stopped taking the Arava, and the hair loss stopped

as well. The RA doc said he'd like to try Remicade since I can't seem to

get the dosage of Prednisone down below 10 a day. So, I guess I'll try

Remicade.

I was thinking the other day how wonderful it would be to have even one

day free of any pain. Not hurting anyplace. Just like a regular old

person. I wonder what it would be like. Do regular people have those

days? Or do they hurt someplace usually too? I wonder.

Anyway, I have been reading the posts and see many, many new names. Hi

to everyone.

Jenna

A Gift of Blood - dark fantasy

The Guardians of Glede - Books 1-6 now available - fantasy adventure

Homepage: www.geocities.com/jennakayfrancis

[Guest guest]

Thanks for the welcome, . I'll wait to hear from Rainy Sue about

how she is doing.

Jenna

A Gift of Blood - dark fantasy

The Guardians of Glede - Books 1-6 now available - fantasy adventure

Homepage: www.geocities.com/jennakayfrancis

[Guest guest]

Hi Jenna! Welcome back!

I'm so glad you are here! Now, if you have any Remicade questions, let me

have em! I've had 9 successful treatments. My 10th will be on May 8th. I

began them in March 2000.

The other thing I have to comment on is where you say, do normal people have

days like that? Or do they hurt someplace? I have often thought of this. Bcs

quite honestly, I can't imagine my life without pain. And when I think of

people who go days without pain, I think that is abnormal. Strange, huh.

Congrats on your writing successes!

~Rainy Sue

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

> Hi ,

>

> Sheesh! Just when I decide to dip my toes back into the world of email

> lists, my ISP decides to sextuple my monthly rate!! Yes, 6 times what

> I'm now paying. Needless to say, I am cancelling with them and moving on

> to someone else.

>

> Anyway, I am still taking methotrexate and prednisone. I tried Vioxx and

> while it didn't bother my BP, which is horribly low usually, it did a

> number on my stomach! So, I had to quit that. Then I tried Arava. That

> was when my hair was falling out - remember? I was afraid that I was

> going to go bald. I stopped taking the Arava, and the hair loss stopped

> as well. The RA doc said he'd like to try Remicade since I can't seem to

> get the dosage of Prednisone down below 10 a day. So, I guess I'll try

> Remicade.

>

> I was thinking the other day how wonderful it would be to have even one

> day free of any pain. Not hurting anyplace. Just like a regular old

> person. I wonder what it would be like. Do regular people have those

> days? Or do they hurt someplace usually too? I wonder.

>

> Anyway, I have been reading the posts and see many, many new names. Hi

> to everyone.

>

> Jenna

[Guest guest]

Hi Jenna. I've heard of rate hikes, but 6 times? They may have many

subscribers following your footsteps and moving on.

I hope the Remicade helps you and you find out what it is like to have pain free

days. Memories of my pain free days are tucked in the back of my mind.

Sometimes it's to depressing for me to visit those memories, while other times

they bring me happiness that I had memories of normal days. I hope we all see

those pain free days again.

hugs,

a

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

From: " JennaKay Francis " <triskelion@...>

< >

Sent: Wednesday, April 11, 2001 9:26 AM

Subject: Re: [ ] Remicade

> Hi ,

>

> Sheesh! Just when I decide to dip my toes back into the world of email

> lists, my ISP decides to sextuple my monthly rate!! Yes, 6 times what

> I'm now paying. Needless to say, I am cancelling with them and moving on

> to someone else.

>

> Anyway, I am still taking methotrexate and prednisone. I tried Vioxx and

> while it didn't bother my BP, which is horribly low usually, it did a

> number on my stomach! So, I had to quit that. Then I tried Arava. That

> was when my hair was falling out - remember? I was afraid that I was

> going to go bald. I stopped taking the Arava, and the hair loss stopped

> as well. The RA doc said he'd like to try Remicade since I can't seem to

> get the dosage of Prednisone down below 10 a day. So, I guess I'll try

> Remicade.

>

> I was thinking the other day how wonderful it would be to have even one

> day free of any pain. Not hurting anyplace. Just like a regular old

> person. I wonder what it would be like. Do regular people have those

> days? Or do they hurt someplace usually too? I wonder.

>

> Anyway, I have been reading the posts and see many, many new names. Hi

> to everyone.

>

> Jenna

[Guest guest]

Sorry I haven't been around to chat much. I've been

editing a book - and I am having a hard time with it

too! Anyway, I was a little concerned to hear that

Rainy Sue was having such problems with the Remicade.

So, it messes with the immune system? That's not

good. I was supposed to start treatments, but haven't

been able to find a time to do that yet with my work

schedule. Plus the idea of sitting still for 2 hours

with an IV does not appeal to me. UGH! I suppose I

could write but then I suppose that might be hard what

with the IV in place. Plus, I have rather small and

fragile veins. Last time I was in the hospital I had

to be stuck 28 times in an attempt to keep an IV

running. *sigh* I had more holes in me than a sieve.

LOL

I would be interested, very interested, in hearing

more about the Remicade and side effects from those of

you on it.

Thanks.

Jenna

=====

Author of Fantasy Adventure, Fantasy Romance, Dark Fantasy

Homepage - http://www.geocities.com/jennakayfrancis

__________________________________________________

[Guest guest]

Jenna,

I had three infusions and had no side affects. However, it didn't work for

me. I had no problems sitting through the infusions. I rather looked

forward to them. I love to read and having a 6 yr old I never get to read

without being interrupted all of the time. I loved it.

Remicade has had some very good affects on those it has helped. Good luck.

Tery

[Guest guest]

rainy sue. are you on methotrexate too?

kathy

[Guest guest]

I agree with Rainy. My situation is very complex due to my recurrent

infections of hernia repair sites. I am now slightly overdue for a remicade

and haven't had the methatrexate for 4 months due to infections and I am

suffering. Finally got a doctor to give me vicodin but even taking 15 mgs

at a time doesn't help. I will say that the remicade really helped with the

chronic fatigue and some of the pain. Today I am going back to bed at 10 AM

for awhile and I barely made it from the bed to the bathroom without falling

and crying. I want my remicade back. Hey I like sitting for 2 hours with a

good book. Our infusion room has recliners and it's quite comfortable.

Mine really only takes ~ 2- 2 1/2 hours. My BP is low!

Temple

Kuddle Kritters Farm

3 Fox Haven Way

Chelmsford, MA 01824

dat2352@...

http://www.homestead.com/kuddlekrittersfarm/index.html

http://www.homestead.com/kuddlekraft/index.html

http://www.homestead.com/kuddlekrittersdairygoats/index.html

[Guest guest]

Hi Jenna,

I do have to say that the times I've been sick have been worth it. Bcs the

Remicade has given me so much more freedom. More energy, and even when sick,

I haven't felt as bad as I would had I not been on the Remicade. So, it's a

trade off and I'm willing to take that. I'm more susceptible to colds, but

when I get them, I have more energy to fight them. If that makes sense?

As for sitting for so long to get the treatment, it's not that bad. More

than likely they'll give you benedryl for precaution against hives or rash.

So you'll probably sleep. And even though you have an IV in ya, they want

you to move that hand around rather than keep it in one spot. They encourage

me to write. It keeps the fluids moving. Finding the time to sit there,

it'll be more than 2 hours, anywhere from 3 to 5. Depending on any problems

that might come up such as a higher BP or pulse rate, but it's really worth

it. Bcs the Remicade makes up for any time spent sitting there with more

energy later that you'd probably sleep away anyhow.

May 8th will be my 10th Remicade.

~Rainy Sue

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

From: " JK Francis " <jennakayfrancis@...>

< >

Sent: Friday, April 20, 2001 8:56 PM

Subject: Re: [ ] Remicade

> Sorry I haven't been around to chat much. I've been

> editing a book - and I am having a hard time with it

> too! Anyway, I was a little concerned to hear that

> Rainy Sue was having such problems with the Remicade.

> So, it messes with the immune system? That's not

> good. I was supposed to start treatments, but haven't

> been able to find a time to do that yet with my work

> schedule. Plus the idea of sitting still for 2 hours

> with an IV does not appeal to me. UGH! I suppose I

> could write but then I suppose that might be hard what

> with the IV in place. Plus, I have rather small and

> fragile veins. Last time I was in the hospital I had

> to be stuck 28 times in an attempt to keep an IV

> running. *sigh* I had more holes in me than a sieve.

> LOL

>

> I would be interested, very interested, in hearing

> more about the Remicade and side effects from those of

> you on it.

>

> Thanks.

>

> Jenna

[Guest guest]

yes mydr also suggested arava. when i was on it last year i didn't like how i

felt.

kathy

[Guest guest]

No, I'm on Arava. I did try the MTX with the Remicade in the beginning and

went into a horrible flare. As soon as I switched back to Arava, I was in

heaven. You don't have to be on MTX, it can be another DMARD.

~Rainy Sue

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

> rainy sue. are you on methotrexate too?

> kathy

[Guest guest]

,

I am contemplating this drug. My dr. suggested I think about it. I am trying

to get all the info about it I can.

How long have you been on this med.?

What about side effects? Thanks Judy D.

[Guest guest]

i'm supposed to start it in a couple weeks. rainy sue has had good results

but seems like that weekend she has nasty cold-like symptoms.

kathy

[Guest guest]

Judy,

I have noticed no side effects. I have tried everything. It helps but no

miracle. My main joints involved are left hip, both knees, ankles(only at

night), wrists and the chronic fatigue. The remicade really helped with the

fatigue, hip and right knee-wrists too. This will be my 2nd maintenance

infusion and 5th infusion this week. I am complex because I have had an on

and off infection for the last 1 1/2 years-not related to RA so it has

compromised the effectiveness of the drugs so hoping for the miracle this

time

Temple

Kuddle Kritters Farm

3 Fox Haven Way

Chelmsford, MA 01824

dat2352@...

http://www.homestead.com/kuddlekrittersfarm/index.html

http://www.homestead.com/kuddlekraft/index.html

http://www.homestead.com/kuddlekrittersdairygoats/index.html

[Guest guest]

Hi Kathy and those thinking of trying this drug. On May 8, I will have my

10th infusion. I've been on Remicade for over a year now and it has been

truly wonderful! For a while there, this past month, I thought the drug

wasn't working well, but I am good as new now. I was just in a bad fibro

flare. Even though I'm on wonderful drugs, doesn't mean the flares are gone

for good.

Yes, I've been sick a lot since being on Remicade. Normally, I only get one

cold/sore throat, bronchitis and laryngitis. This past year, I've had those

doubled. BUT keep in mind that this year was really bad for this sort of

thing. My boyfriend also has been sick more this year than normal and he's

extremely healthy, so I can't blame the Remicade for how sick I've been. I

really have no proof to back up that claim. I began my Remicade in March

2000. It wasn't until November 2000 that I first got sick. So you can see,

there were 8 months from my first Remicade infusion (which I had 6 of) until

I got sick. And this has all happened during the cold months. At present, I

am without any kind of illness. I have tons of energy, pain is under

control, I'm not all that depressed - which is a sign of lots of pain, and

am just plain motivated to live life and be happy. AND CLEAN MY PLACE! =)

You can usually judge how good I feel by how clean my apartment is. Well,

I'm running out of cleaning, if that tells ya anything!

With EVERY drug there is a risk. With EVERY thing you do in life there is a

risk. Give the drug a try. We have a disease that is mysterious, so what any

drug will do is also a mystery. We just don't know. That is the risk. And

since there has been much good written about the drug, and I am here to tell

you personally about my xp with it, it would be a crime to not try it. I've

had a wonderful year! Even while I was sick, I felt good! I wasn't as low on

energy as I would have been had I not been on the drug. Normally when I get

sick, all I want to do is sleep through it. This year, I caught up on lots

and lots of reading! Yeah, I was still in bed, but I kept my mind active

with book after book, etc. I need to hit the used book store soon!

In the end? It's your decision.

~Rainy Sue

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

> i'm supposed to start it in a couple weeks. rainy sue has had good results

> but seems like that weekend she has nasty cold-like symptoms.

> kathy