Re: Remicade Infusions to start tomorrow afternoon/

[Guest guest]

Dear :

You are in my prayers , I hope that everything goes well with the

Remicade treatments. Best wishes to you too.

Sincerely, Colletti

Anjillah@...

[Guest guest]

a, , Tess, Marge, and everyone-

I apologize that this is a group thank you but I have been absolutely exhausted

since Tuesday's infusion...I guess that fatigue can be an initial side effect.

That is not to say I don't think the drug is working...I am seeing a major

difference in swelling. My primary also put me on maxzide...a thiazide

diuretic...for all the fluid retention and as a preventive for new kidney

stones. She and my urologist think the protein diet is, diplomatically

speaking, " ill advised. " I actually think my primary used the words....its nuts.

Said nothing in my bloodwork indicated that a lack of protein in my diet was

causing the swelling. She likes the ideas of Weight Watchers IF that is what I

want to do.She doesn't get bent out of shape about my weight ...no pun intended.

I have lost almost 10 pounds...since starting diuretic last Sunday and Remicade

on Tuesday. Unfortunately that has somewhat masked what is Remicade result and

what is diuretic result. Regardless my feet and ankles and hands and wrists are

significantly less swollen. It is so wonderful not having that awful tightenss

in my ankles and calves and feet...and shoes actually fit in the morning. (

Those who have been around a bit on this list might remember that a pair of

green suede Evan Picone pumps were my epiphany in accepting this illness LOL at

myself) I am generally in less pain. I have been in a fog though with fatigue

since Tuesday and having been having some nausea/queasiness in early part of

day...Has anyone else found that to be true?? It does go away doesn't it?The

fatigue is a large reason I have waited until today to respond...have been too

tired to do more than read when I get home from work.

Infusion process itself was uneventful. No unusual reactions during....only

probs are hiding veins... IV hard to start because of it. It took a second

attempt to find a vein...and I am still pretty bruised from actual IV and

false start IV. It was nice to put my feet up for a couple of hours

though...and to read...something other law related stuff.

You all have been such a great support in this...it is so nice when you respond

as I know you know what I am experiencing. Next infusion is Oct.1. Continue to

keep this in your prayers. I have had this illness in some form for over 20

years...it is exciting that there might be a drug that might actually make me

feel better not just one that might help me to maintain.

HUGS and Blessings!

[Guest guest]

I hope your fatigue is improving by now, . Keep in mind that your

immune system is used to doing things a certain way and now the Remicade

came along and threw it a curve. Let's hope a good curve. What I'm

trying to say is that I don't think fatigue is a surprising side-effect

(and it is a known, common one). Give your body a chance to get used to

it. Also, you probably were under a lot of stress (in addition to your

stressful job) just getting the infusion arranged and anticipating the

big event.

I'm glad to hear that your primary and urologist nixed the protein diet.

I think a and I had to bite our tongues and not declare it " nuts "

when you first ran it by us.

Continued good luck,

Re: [ ] Remicade Infusions to start tomorrow

afternoon/

> a, , Tess, Marge, and everyone-

>

> I apologize that this is a group thank you but I have been absolutely

exhausted

> since Tuesday's infusion...I guess that fatigue can be an initial side

effect.

> That is not to say I don't think the drug is working...I am seeing a

major

> difference in swelling. My primary also put me on maxzide...a thiazide

> diuretic...for all the fluid retention and as a preventive for new

kidney

> stones. She and my urologist think the protein diet is, diplomatically

> speaking, " ill advised. " I actually think my primary used the

words....its nuts.

> Said nothing in my bloodwork indicated that a lack of protein in my

diet was

> causing the swelling. She likes the ideas of Weight Watchers IF that

is what I

> want to do.She doesn't get bent out of shape about my weight ...no pun

intended.

> I have lost almost 10 pounds...since starting diuretic last Sunday and

Remicade

> on Tuesday. Unfortunately that has somewhat masked what is Remicade

result and

> what is diuretic result. Regardless my feet and ankles and hands and

wrists are

> significantly less swollen. It is so wonderful not having that awful

tightenss

> in my ankles and calves and feet...and shoes actually fit in the

morning. (

> Those who have been around a bit on this list might remember that a

pair of

> green suede Evan Picone pumps were my epiphany in accepting this

illness LOL at

> myself) I am generally in less pain. I have been in a fog though with

fatigue

> since Tuesday and having been having some nausea/queasiness in early

part of

> day...Has anyone else found that to be true?? It does go away doesn't

it?The

> fatigue is a large reason I have waited until today to respond...have

been too

> tired to do more than read when I get home from work.

>

> Infusion process itself was uneventful. No unusual reactions

during....only

> probs are hiding veins... IV hard to start because of it. It took a

second

> attempt to find a vein...and I am still pretty bruised from actual IV

and

> false start IV. It was nice to put my feet up for a couple of hours

> though...and to read...something other law related stuff.

>

> You all have been such a great support in this...it is so nice when

you respond

> as I know you know what I am experiencing. Next infusion is Oct.1.

Continue to

> keep this in your prayers. I have had this illness in some form for

over 20

> years...it is exciting that there might be a drug that might actually

make me

> feel better not just one that might help me to maintain.

>

> HUGS and Blessings!

>

>