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Re: Update - Darlene's 2nd infusion

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Tracie -- or anyone else--- have you had problems with insomnia with the remicade??

Also, did you gain weight on it? One of the ladies taking it yesterday with me complained about gaining weight with it and I just wondered???

I haven't had problems with insomnia from the Remicade, but i do with the Methotrexate. I take the MTX on Friday--and am up most of the night-- and generally lose Sunday or Monday to an 18 hour sleep day.

I am finding that I have alot more energy with the infusions at 4 week intervals--but I am realizing that when I do get the Remicade, I need an extra couple of days to recoup.

I'm not having to use my oxygen during the day, and actually took a walk thru the local mall at a pretty good clip yesterday, and didn't get too winded! It has definately helped with the sarcoid induced arthritis.

As far as the weight gain goes-- yes, I put on weight. All of the immunosupressants lower the speed of your metabolism, so weight gain is probable. I'm on Plaquenil, Methotrexate and Remicade.

I am officially diabetic, so I'm fighting the years of prednisone insult on my pancreas. I'm only taking Glucophage for now--but if I don't clean up my act and start eating better-- I'll be sticking myself.

As far as the nausea-- eat before your infusion. It really helps to have something on your stomach. I schedule my infusions, so that I can go out and have an omelet for breakfast--so that it no longer is a problem.

I'm so glad that you are seeing improvement! So very glad!!!!!!!

Hugs,

Tracie

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Tracie -- or anyone else--- have you had problems with insomnia with the remicade??

Also, did you gain weight on it? One of the ladies taking it yesterday with me complained about gaining weight with it and I just wondered???

I haven't had problems with insomnia from the Remicade, but i do with the Methotrexate. I take the MTX on Friday--and am up most of the night-- and generally lose Sunday or Monday to an 18 hour sleep day.

I am finding that I have alot more energy with the infusions at 4 week intervals--but I am realizing that when I do get the Remicade, I need an extra couple of days to recoup.

I'm not having to use my oxygen during the day, and actually took a walk thru the local mall at a pretty good clip yesterday, and didn't get too winded! It has definately helped with the sarcoid induced arthritis.

As far as the weight gain goes-- yes, I put on weight. All of the immunosupressants lower the speed of your metabolism, so weight gain is probable. I'm on Plaquenil, Methotrexate and Remicade.

I am officially diabetic, so I'm fighting the years of prednisone insult on my pancreas. I'm only taking Glucophage for now--but if I don't clean up my act and start eating better-- I'll be sticking myself.

As far as the nausea-- eat before your infusion. It really helps to have something on your stomach. I schedule my infusions, so that I can go out and have an omelet for breakfast--so that it no longer is a problem.

I'm so glad that you are seeing improvement! So very glad!!!!!!!

Hugs,

Tracie

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Hooray! Now you're cookin' on the front burner! (Anyone else remember that phrase?)

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: <Neurosarcoidosis >Subject: Update - Darlene's 2nd infusionDate: Fri, 21 Apr 2006 04:08:52 -0500

Hi everyone,

Again, thanks to all those who sent well wishes and prayers for my infusion. It did

go pretty well........They gave me benedryl and something for my nausea and I got a bit

of a headache during the infusion, but it was tolerable. My nausea was lots better this

time so that is a relief. Hubby took me out to eat afterwards and then I dozed all the

way home and I have not been able to sleep at all tonight! I have been up since yesterday morning at 5:00 am. Last time, I pretty well slept for a couple of days, but

not this time. I do believe the Remicade is already helping with the joint pain and also

my breathing! Sure hope it continues. I go back for my 3rd infusion in a month and then they will try me for 8 weeks in between infusions......

Tracie -- or anyone else--- have you had problems with insomnia with the remicade??

Also, did you gain weight on it? One of the ladies taking it yesterday with me complained about gaining weight with it and I just wondered???

Anyway, I have high hopes with this drug.........and again, thanks to all for all their

helpl

Love,

Darlene~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

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Posted
Posted

Hooray! Now you're cookin' on the front burner! (Anyone else remember that phrase?)

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: <Neurosarcoidosis >Subject: Update - Darlene's 2nd infusionDate: Fri, 21 Apr 2006 04:08:52 -0500

Hi everyone,

Again, thanks to all those who sent well wishes and prayers for my infusion. It did

go pretty well........They gave me benedryl and something for my nausea and I got a bit

of a headache during the infusion, but it was tolerable. My nausea was lots better this

time so that is a relief. Hubby took me out to eat afterwards and then I dozed all the

way home and I have not been able to sleep at all tonight! I have been up since yesterday morning at 5:00 am. Last time, I pretty well slept for a couple of days, but

not this time. I do believe the Remicade is already helping with the joint pain and also

my breathing! Sure hope it continues. I go back for my 3rd infusion in a month and then they will try me for 8 weeks in between infusions......

Tracie -- or anyone else--- have you had problems with insomnia with the remicade??

Also, did you gain weight on it? One of the ladies taking it yesterday with me complained about gaining weight with it and I just wondered???

Anyway, I have high hopes with this drug.........and again, thanks to all for all their

helpl

Love,

Darlene~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

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Posted
Posted

Hooray! Now you're cookin' on the front burner! (Anyone else remember that phrase?)

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: <Neurosarcoidosis >Subject: Update - Darlene's 2nd infusionDate: Fri, 21 Apr 2006 04:08:52 -0500

Hi everyone,

Again, thanks to all those who sent well wishes and prayers for my infusion. It did

go pretty well........They gave me benedryl and something for my nausea and I got a bit

of a headache during the infusion, but it was tolerable. My nausea was lots better this

time so that is a relief. Hubby took me out to eat afterwards and then I dozed all the

way home and I have not been able to sleep at all tonight! I have been up since yesterday morning at 5:00 am. Last time, I pretty well slept for a couple of days, but

not this time. I do believe the Remicade is already helping with the joint pain and also

my breathing! Sure hope it continues. I go back for my 3rd infusion in a month and then they will try me for 8 weeks in between infusions......

Tracie -- or anyone else--- have you had problems with insomnia with the remicade??

Also, did you gain weight on it? One of the ladies taking it yesterday with me complained about gaining weight with it and I just wondered???

Anyway, I have high hopes with this drug.........and again, thanks to all for all their

helpl

Love,

Darlene~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

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Posted
Posted

So did we, Terri..........

Hugs,

Darlene

>

>

>

> Rose,

>

> We always said " Now you are cooking with gas " .

>

> Terri G.

>

>

>

>

>

>

>

>

>

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> NS CHAT:- Has been cancelled for now.

>

> Message Archives:-

> http://groups.yahoo.com/group/Neurosarcoidosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant messengers.

> http://groups.yahoo.com/group/Neurosarcoidosis/database

>

>

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Posted
Posted

So did we, Terri..........

Hugs,

Darlene

>

>

>

> Rose,

>

> We always said " Now you are cooking with gas " .

>

> Terri G.

>

>

>

>

>

>

>

>

>

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> NS CHAT:- Has been cancelled for now.

>

> Message Archives:-

> http://groups.yahoo.com/group/Neurosarcoidosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant messengers.

> http://groups.yahoo.com/group/Neurosarcoidosis/database

>

>

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Guest guest

Guest guest

Posted
Posted

So did we, Terri..........

Hugs,

Darlene

>

>

>

> Rose,

>

> We always said " Now you are cooking with gas " .

>

> Terri G.

>

>

>

>

>

>

>

>

>

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> NS CHAT:- Has been cancelled for now.

>

> Message Archives:-

> http://groups.yahoo.com/group/Neurosarcoidosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant messengers.

> http://groups.yahoo.com/group/Neurosarcoidosis/database

>

>

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Posted
Posted

I'm a little behind again on emails, but happy to hear that your

Remicade tx went well, don't over due when you start feeling better,

that catches up you. I know I have done that too many times to count.

I hope you have continued positive result.

hugs and blessings,

Marla

Hi everyone,

Again, thanks to all those who sent well wishes and prayers for my infusion. It did go pretty well........They gave me benedryl and something for my nausea and I got a bit of a headache during the infusion, but it was tolerable. My nausea was lots better this

time so that is a relief. Hubby took me out to eat afterwards and then I dozed all the way home and I have not been able to sleep at all tonight! I have been up since yesterday morning at 5:00 am. Last time, I pretty well slept for a couple of days, but

not this time. I do believe the Remicade is already helping with the joint pain and also

my breathing! Sure hope it continues. I go back for my 3rd infusion in a month and then they will try me for 8 weeks in between infusions......

Tracie -- or anyone else--- have you had problems with insomnia with the remicade??

Also, did you gain weight on it? One of the ladies taking it yesterday with me complained about gaining weight with it and I just wondered???

Anyway, I have high hopes with this drug.........and again, thanks to all for all their

helpl

Love,

Darlene

-- The Lord bless you and keep you:

The Lord make his face to shine upon you, and be gracious to you:

The Lord lift up his countenance upon you and give you peace.

Numbers 6:24-26

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