Re: Reneness update and apology for absence

[Guest guest]

Welcome Back Reneness! You were missed while you were away. I hope

you are doing better now. I know I have missed your humor and wit.

I used to be a " writer of sorts " myself and now have trouble even

writing a paragraph! I was trying to figure out how I could set up

my pc next to the bed as well. But if I did that, I probably would

never get out of bed unless to go to the bathroom!!! But I know you

are a hell of a lot worse than I am and you deserve the comfort.

Most of my Christmas shopping was done on my computer. I only had

to go to the store twice and my husband (very unenthusiastically)

wheeled me around in one of their wheel chairs. But your mother

sounds like she is a big help to you. You are very lucky.

I am now taking 20mg methotrexate and am waiting on the Remicade

approval from my insurance company. It's taking forever and I have

a feeling that it's not gonna fly. BUt I am trying to think

positively.

I know what you mean about this group. I don't know what I would

do with all these loving, supportive people. I am glad you are back

and I hope things are going better for you. Luv, Debbie

> Aisha's Army Corps!

>

> Thanks for the cute card. Mean cold and horrific bone pain

> bed for one week solid. Of course., I have over 300 messages to

> read/weed. Love you all and hope you are having a happy new year.

>

> P.S. Immuno doc has me up to 10 mg of remicade and wants to go

back to

> twice a month (contrary to Baughman's advice -- although this doc

has

> even more immuno research experience, so I'm going to try to trust

him

> -- for now). Also up to 10mg of methotrexate and will be going up

more

> each week but they haven't told me the ceiling there. This time I

did

> " feel " the immunosuppressant, i.e. I was sick as hell on top of

the cold.

>

> Well, I have today and tomorrow until I get sick all over again.

Had a

> chance to take a look at all my blood work since August. Very off

on

> Eiosonophils (?) and Neutrophils -- I don't remember which is way

high

> and which is way low, but it's been consistent. Other white cells

are

> high and low but not severe. AST was off until November. And, as

I

> suspected, I am now POST menopausal. Now I know why the hot

flashes

> have permeated my days. Thank god for crushed ice!

>

> Sorry for going on -- just giving an update. I finally read the

smaller

> pamphlets from the conference -- talked about fairly common to

have sarc

> in joints and bones -- have felt like feet are breaking,

literally,

> whenever I walk, and my bones have felt broken head to toe.

Better

> today though, thank goodness.

>

> Sorry I missed the support group meeting in Indy Saturday the

10th, but

> was getting my first sponge bath from someone else in 14 months

(ick).

> I am going on ritalin on Tuesday (I was supposed to pick it up

two

> weeks ago after my chemo, but it ran late and the oncology desk

was

> closed). I used to take it and it was more gentle than Provigil.

If I

> can beat the fatigue without becoming a mean, chattering idiot I

will be

> much better. I really miss my periodic volunteer work. Please

tell me

> I can get that back. --- But chins up. If not, I have decided to

try

> to write/rewrite some articles/stories (I had my older son set up

my

> laptop and a printer by my bed. If anyone can get a 56k modem

card for

> a 1400cs Mac laptop, I would get a dial-up provider again and not

get so

> behind in my mail!!!!). I'm trying to stay out of depression's

grip --

> mostly by prayer and meditation. I am so glad the holidays are

over, as

> I am sure all of you are, too. So much pressure to navigate the

gift

> buying. What I do is cut out pictures from the Sunday paper ads

and

> paste them on papers with the store names and give my Mom my debit

card.

> She was great this year. I feel so sorry for her. She is really

> miserable living here -- she really is a loner. Soooooooo. I am

> praying to get so much better that she can move out without

guilt. I

> must admit, though, that for the past week she has had to do

everything

> for me. So much for independence!

>

> I love you all. Hope all of you that are facing increasing pain,

> frustration and disability can find the comfort that I do in this

group.

> I pray for you all in my own way. Healing, happiness and peace.

>

> Reneness

[Guest guest]

You take care too, sweets. Will write more when I recover from tomorrow's

chemo.

General question -- is it better to take the methotrexate the same day as

the remicade and just get all the ickies out of the way or not?

Marla Bramer wrote:

,

I am so sorry to hear this, I will keep you in my prayers, and hang in

there, with all this love and support from all these wonderful Sarc family,

you can only get better.

Love,

Marla

Reneness update and apology for absence

> Aisha's Army Corps!

>

> Thanks for the cute card. Mean cold and horrific bone pain had me

in

> bed for one week solid. Of course., I have over 300 messages to

> read/weed. Love you all and hope you are having a happy new year.

>

> P.S. Immuno doc has me up to 10 mg of remicade and wants to go back

to

> twice a month (contrary to Baughman's advice -- although this doc has

> even more immuno research experience, so I'm going to try to trust

him

> -- for now). Also up to 10mg of methotrexate and will be going up

more

> each week but they haven't told me the ceiling there. This time I

did

> "feel" the immunosuppressant, i.e. I was sick as hell on top of the

cold.

>

> Well, I have today and tomorrow until I get sick all over again. Had

a

> chance to take a look at all my blood work since August. Very off

on

> Eiosonophils (?) and Neutrophils -- I don't remember which is way high

> and which is way low, but it's been consistent. Other white cells

are

> high and low but not severe. AST was off until November. And, as

I

> suspected, I am now POST menopausal. Now I know why the hot flashes

> have permeated my days. Thank god for crushed ice!

>

> Sorry for going on -- just giving an update. I finally read the smaller

> pamphlets from the conference -- talked about fairly common to have

sarc

> in joints and bones -- have felt like feet are breaking, literally,

> whenever I walk, and my bones have felt broken head to toe. Better

> today though, thank goodness.

>

> Sorry I missed the support group meeting in Indy Saturday the 10th,

but

> was getting my first sponge bath from someone else in 14 months (ick).

> I am going on ritalin on Tuesday (I was supposed to pick it up two

> weeks ago after my chemo, but it ran late and the oncology desk was

> closed). I used to take it and it was more gentle than Provigil.

If I

> can beat the fatigue without becoming a mean, chattering idiot I will

be

> much better. I really miss my periodic volunteer work. Please tell

me

> I can get that back. --- But chins up. If not, I have decided to

try

> to write/rewrite some articles/stories (I had my older son set up my

> laptop and a printer by my bed. If anyone can get a 56k modem card

for

> a 1400cs Mac laptop, I would get a dial-up provider again and not get

so

> behind in my mail!!!!). I'm trying to stay out of depression's grip

--

> mostly by prayer and meditation. I am so glad the holidays are over,

as

> I am sure all of you are, too. So much pressure to navigate the gift

> buying. What I do is cut out pictures from the Sunday paper ads and

> paste them on papers with the store names and give my Mom my debit

card.

> She was great this year. I feel so sorry for her. She is really

> miserable living here -- she really is a loner. Soooooooo. I am

> praying to get so much better that she can move out without guilt.

I

> must admit, though, that for the past week she has had to do everything

> for me. So much for independence!

>

> I love you all. Hope all of you that are facing increasing pain,

> frustration and disability can find the comfort that I do in this group.

> I pray for you all in my own way. Healing, happiness and peace.

>

> Reneness

>

>

>

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

> The Neurosarcoidosis Community

>

> Live Group Chat:-

> Mondays & Fridays 10pm EST USA

> http://www.elderwyn.com/neurosarcoidosis/chat.php

>

> Message Archives:-

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>

> Members Database:-

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

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

>

>

[Guest guest]

Hi , According to my dr and others here on the board , I think

the " norm " is between 15 and 25 mgs a week. I was taking 15 since

Sept. then in November, he upped me to 20 because I wasn't having

much of a response. That's when he started talking about the

Remicade also. I usually take the metho on Sunday night and it

usually puts me down most of Monday. I can still get up and do

things here and there, but I get tired fast. I get nauseous with the

lovely " sarc headaches " and also a bit more all-over body pain

(legs, especially)so I just try and lay low most of Monday and go to

bed early. Tuesday, I still feel it a little , but not quite as bad

that's when the diarrhea may hit. (Remember what goes in, must come

out!) But Wed. I am back to " normal " or as close to normal as I'm

gonna get with Sarc.

Im sure everyone's different and has different experiences, but

that's what happens with me. HOpe that helps you out, good luck.

Maybe you can help me out if I ever start the Remicade!!

Luv, Debbie

> > > Aisha's Army Corps!

> > >

> > > Thanks for the cute card. Mean cold and horrific bone pain

> >

> > > bed for one week solid. Of course., I have over 300 messages

to

> > > read/weed. Love you all and hope you are having a happy new

year.

> > >

> > > P.S. Immuno doc has me up to 10 mg of remicade and wants to go

> > back to

> > > twice a month (contrary to Baughman's advice -- although this

doc

> > has

> > > even more immuno research experience, so I'm going to try to

trust

> > him

> > > -- for now). Also up to 10mg of methotrexate and will be

going up

> > more

> > > each week but they haven't told me the ceiling there. This

time I

> > did

> > > " feel " the immunosuppressant, i.e. I was sick as hell on top of

> > the cold.

> > >

> > > Well, I have today and tomorrow until I get sick all over

again.

> > Had a

> > > chance to take a look at all my blood work since August. Very

off

> > on

> > > Eiosonophils (?) and Neutrophils -- I don't remember which is

way

> > high

> > > and which is way low, but it's been consistent. Other white

cells

> > are

> > > high and low but not severe. AST was off until November.

And, as

> > I

> > > suspected, I am now POST menopausal. Now I know why the hot

> > flashes

> > > have permeated my days. Thank god for crushed ice!

> > >

> > > Sorry for going on -- just giving an update. I finally read

the

> > smaller

> > > pamphlets from the conference -- talked about fairly common to

> > have sarc

> > > in joints and bones -- have felt like feet are breaking,

> > literally,

> > > whenever I walk, and my bones have felt broken head to toe.

> > Better

> > > today though, thank goodness.

> > >

> > > Sorry I missed the support group meeting in Indy Saturday the

> > 10th, but

> > > was getting my first sponge bath from someone else in 14 months

> > (ick).

> > > I am going on ritalin on Tuesday (I was supposed to pick it up

> > two

> > > weeks ago after my chemo, but it ran late and the oncology desk

> > was

> > > closed). I used to take it and it was more gentle than

Provigil.

> > If I

> > > can beat the fatigue without becoming a mean, chattering idiot

I

> > will be

> > > much better. I really miss my periodic volunteer work. Please

> > tell me

> > > I can get that back. --- But chins up. If not, I have

decided to

> > try

> > > to write/rewrite some articles/stories (I had my older son set

up

> > my

> > > laptop and a printer by my bed. If anyone can get a 56k modem

> > card for

> > > a 1400cs Mac laptop, I would get a dial-up provider again and

not

> > get so

> > > behind in my mail!!!!). I'm trying to stay out of depression's

> > grip --

> > > mostly by prayer and meditation. I am so glad the holidays are

> > over, as

> > > I am sure all of you are, too. So much pressure to navigate

the

> > gift

> > > buying. What I do is cut out pictures from the Sunday paper

ads

> > and

> > > paste them on papers with the store names and give my Mom my

debit

> > card.

> > > She was great this year. I feel so sorry for her. She is

really

> > > miserable living here -- she really is a loner. Soooooooo. I

am

> > > praying to get so much better that she can move out without

> > guilt. I

> > > must admit, though, that for the past week she has had to do

> > everything

> > > for me. So much for independence!

> > >

> > > I love you all. Hope all of you that are facing increasing

pain,

> > > frustration and disability can find the comfort that I do in

this

> > group.

> > > I pray for you all in my own way. Healing, happiness and

peace.

> > >

> > > Reneness

> >

> >

> >

> >

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

> > The Neurosarcoidosis Community

> >

> > Live Group Chat:-

> > Mondays & Fridays 10pm EST USA

> > http://www.elderwyn.com/neurosarcoidosis/chat.php

> >

> > 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

> >

> >

[Guest guest]

Faith makes all things possible,Love makes it easy!

Janjanbovi@...

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,

Hey there i'm taking methotrexate 12.5 mg a week I usually take it on monday and I have the ickies for a couple days but I have never taken the Remicade so I can't help you with that one sweetie............

I need something cause the morphine I take for pain isn't helping much anymore and the pain is getting really bad.

Good luck to ya sweetie,

Jan

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[Guest guest]

Faith makes all things possible,Love makes it easy!

Janjanbovi@...

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Thanks

Thats what I need is some pointers on pain med advice cause right now i'm on neurontin 800mg three times a day and avinza 90mg a day which is long acting morphine I just got my pcp to increase the avinza just this week. And for break through he gave me darvocet n100 every 4 hours prn now come on here. I do not abuse pain meds here and the pain has been quite severe at times here lately.

Then there have been times it has not been too bad.

The head fuzzies and pain is getting worse and the nausea is escalating so i'm needing more phenerghan too.

I'm really trying to find another doc to manage my pain meds. I also take topomax for the neuro pain the headaches.

you have been such a great friend thanks from the bottom of my heart.

How are you? How are things going for you? Can I do anything for you? If I ever can do anything please let me know.

Much love and support,

Very sore Jan

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[Guest guest]

Hi guys, Sorry to butt in. But they plan on keeping me on the

methotrexate when and if I start Remicade. Most of the literature I

have read recommends this. Debbie

> Hey ... I knew you had been doing good on the Remicaide,

You've been my

> poster child..(hmmm) woman for awhile now.. arguing that you've

done so well

> on it...but I also know that they add mtx sometimes too.. but I

didn't know

> why.. thanks for that info... Hang in there , we are all glad

your back

> ..

>

> Hugs,

> t

[Guest guest]

Jan,

Sorry I haven't replied in a more timely manner. Haven't been up much. Hubby

decided it was okay to use his school laptop until he decides to learn how to

use it. I will also try to find some groovy stuff for his Earth Science

classes.

My pain isn't too much of an issue as long as I can take Vioxx for my prednisone

induced arthritis. I didn't know how bad it was until I went without the meds

for five days. arghh. I couldn't bend anything!

A bit tired and trying to clear out my 600+ messages.

Take care and feel better,

Reneness

--

Life is a menu! Why not go gourmet!