Re: Re: My Remicade Infusions

[Guest guest]

Hi Tania,

Thanks for the information, so far I don't feel any different. Thursday

is my second treatment, so maybe that will show some difference. I know my

doctor had told me the second treatment is the one people usually notice a

benefit. Let me know how you make out with your third treatment. I think

Rainy Sue is probably getting ready for another treatment. I know she will

be seeing her doctor first.

Have a good day,

----------

> From: Tania Bradley <tbradley@...>

> egroups

> Subject: [ ] Re: My Remicade Infusions

> Date: Tuesday, September 12, 2000 12:54 AM

>

>

> Hi ,

>

> Sorry about the delay in responding to your questions. I've been working

> the last few days and I become totally wiped out because of the fast

> hospital pace thus email and egroups have become slightly backed up!

>

> The most noticeable relief occured about 4-5 days after my first

infusion.

> I had a finger that was partially bent and couldn't be straightened and

> another that was straight which I couldn't bend. The bent finger remains

> bent for about an hour now when I first get up in the morning but it

> eventually straightens itself out now and I can use it once again.

>

> Just before my second infusion (about 2 weeks later) the finger I

couldn't

> bend I could manage to force down. It's still really stiff even now

though.

>

> Morning stiffness was also much improved but I still have many aches and

> pains throughout the day and a lot of inflammation is still present. I

> remain hopeful that one day I will be able to fit into all my many pairs

of

> shoes that I had bought before the RA set in!! LOL

>

> Since receiving my second infusion I honestly haven't noticed any more

> improvement. However, I'm still experiencing the benefits from the first

> infusion like I mentioned above.

>

> I go for my third infusion next week so maybe that will kick things into

> high gear...I don't know. I definitely have experienced some relief from

the

> terrible acute pain I was experiencing ( I will still have " bad " days as

> well) but I remain a prisoner of the ongoing dull aches and sporatic

sharp

> pains which occur at times throughout my body...they've decided to hang

> around still!

>

> I receive my infusions in my rheumy's office. She does it on a day when

she

> doesn't have office hours. When my first infusion was done there were 5

of

> us, 1 nurse and my rheumy (she's a hands on kind of doc which is nice...I

> think she is genuinely concerned about our well-being). The second

infusion

> was done with only 2 of us because I would assume we were the only ones

due

> for an infusion. Once again the same nurse was there. I think he's

> contracted out by my rheumy through an agency and the expense for that is

> then sent to the drug company supplying the medication here in Canada

which

> is Schering. I'm not positive about that though. It is the same nurse

> every time.

>

> I'll keep you posted on how the third one goes. One other thing....you

may

> want to mention next time you go if you may be one of the individuals who

> requires a higher dose. There is one patient I know of who is under the

> care of my rheumy who has a really severe case. His infusion has been

> bumped up to 5mg/kg (standard is 3mg/kg) and he appears to be doing much

> better with that dosing. Good luck and don't lose hope...it's early yet

and

> perhaps fiddling with the dosing strength will do the trick.

>

> Take care,

>

> Tania :~)

>

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

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

> Our chat room: www.delphi.com/RheumatoidArth1/start

[Guest guest]

Hi Peoples,

You are right, , my 6th treatment is Monday, the 18th. I don't see my

doc before that. I planned to call him and talk about not taking the

Benedryl. HATE that stuff.

Also, for your info, this is week 5 since last treatment on August 9, and the

Remicade has worn off. BUT I think I am getting a cold bcs Ryder and I are

both having all over body aches. So I don't know which is the cold, arthritis

or Remicade wearing off. All I know is my hands hurt and they are normally

pretty good. They are a bit swollen and pretty achy. The rest of me aches as

well. Ryder and I slept horribly last night. We both kept waking up aching.

Then to top it all off I had another nightmare. I scream and wake Ryder and

he reaches over and kisses me awake and holds me then we go back to sleep. I

have no clue why I have these.

These are the past dates of my Remicade treatments:

March 7

March 20

April 20

June 14

August 9

September 18 - coming up Monday

~Rainy Sue

> Hi Tania,

> Thanks for the information, so far I don't feel any different. Thursday

> is my second treatment, so maybe that will show some difference. I know my

> doctor had told me the second treatment is the one people usually notice a

> benefit. Let me know how you make out with your third treatment. I think

> Rainy Sue is probably getting ready for another treatment. I know she will

> be seeing her doctor first.

> Have a good day,

>

[Guest guest]

You know all of this talk of Remicade makes me want to discuss it with my

doctor. If I am doing this good on Arava, I am thinking what marvelous

things Remicade would do for me!! I might actually be able to go hiking

again! Or bike riding (if I can still balance on the dang things!), or

take a weight lifting class...or just not be so dang tired. I think

that's where most of my problem is right now. The fatigue. But then I

also have FMS so that may be where the fatigue is coming in. Don't know.

I only have occasional flares now - the other day my knee was swollen and

aching, but it passed pretty quickly. I AM on 20 mg of MTX, but I have

dropped my prednisone to 8 mg now. Wish the weight would drop as well!

Hmmm...guess I'll just have to eat up the rest of that tempting fresh

blueberry cobbler and get it out of the house. Oh and then get the

Snickers, Milky Way and Three Muskateers snack candies out of the

house...and the Twinkies....My! I'm going to have a busy, busy day! *G*

Jenna

FREE SPIRIT - Starlight Writers Publications

THE GUARDIANS OF GLEDE - SWP Editors Choice Award; SWP Stellar Award;

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Homepage: www.geocities.com/jennakayfrancis

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[Guest guest]

Hi Sue,

If you think you are getting a cold, you need to call your doctor right

away. This is what the nurses told me at my first treatment. She said

even if I just started to cough to call him right away. So be careful, if

you get an infection while on Remicade it needs to be treated right away.

I have all the questions to ask the nurse on Thursday. So I will ask

about that Benadryl and why I must always have two nurses.

I have appointment with the Rheumy tomorrow, so I will see what he says.

I think we need to do something about the MTX.

----------

> From: Rysu19@...

> egroups

> Subject: Re: [ ] Re: My Remicade Infusions

> Date: Tuesday, September 12, 2000 1:42 PM

>

>

> Hi Peoples,

>

> You are right, , my 6th treatment is Monday, the 18th. I don't see

my

> doc before that. I planned to call him and talk about not taking the

> Benedryl. HATE that stuff.

>

> Also, for your info, this is week 5 since last treatment on August 9, and

the

> Remicade has worn off. BUT I think I am getting a cold bcs Ryder and I

are

> both having all over body aches. So I don't know which is the cold,

arthritis

> or Remicade wearing off. All I know is my hands hurt and they are

normally

> pretty good. They are a bit swollen and pretty achy. The rest of me aches

as

> well. Ryder and I slept horribly last night. We both kept waking up

aching.

> Then to top it all off I had another nightmare. I scream and wake Ryder

and

> he reaches over and kisses me awake and holds me then we go back to

sleep. I

> have no clue why I have these.

>

> These are the past dates of my Remicade treatments:

> March 7

> March 20

> April 20

> June 14

> August 9

> September 18 - coming up Monday

>

> ~Rainy Sue

>

> > Hi Tania,

> > Thanks for the information, so far I don't feel any different.

Thursday

> > is my second treatment, so maybe that will show some difference. I

know my

> > doctor had told me the second treatment is the one people usually

notice a

> > benefit. Let me know how you make out with your third treatment. I

think

> > Rainy Sue is probably getting ready for another treatment. I know she

will

> > be seeing her doctor first.

> > Have a good day,

> >

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

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

> Our chat room: www.delphi.com/RheumatoidArth1/start

[Guest guest]

Please take my name of your RA support groups.com mailing list. I am

getting too much mail from the group. thank you.

[Guest guest]

please take my address off your mailing list. I am recieving too much mail.

thank you

[Guest guest]

No cold. I was just a weird achy. Whew! Believe me, I know about calling

them. My nurse Barb is very strict with us. If she suspects anything, she

sends us to see a doctor while there! It's almost annoying!

I know why I take the benedryl. It is a precaution so I don't get sick,

nauseous.

~Rainy Sue

> Hi Sue,

> If you think you are getting a cold, you need to call your doctor right

> away. This is what the nurses told me at my first treatment. She said

> even if I just started to cough to call him right away. So be careful, if

> you get an infection while on Remicade it needs to be treated right away.

> I have all the questions to ask the nurse on Thursday. So I will ask

> about that Benadryl and why I must always have two nurses.

> I have appointment with the Rheumy tomorrow, so I will see what he says.

> I think we need to do something about the MTX.

>

[Guest guest]

Hi Sue,

Hope you and Ryder will both be feeling better. Tomorrow is the remicade

day, I saw the Rheumy today. Cross your fingers better yet say a prayer, I

get some relief.

P.S. I will let you know what they tell me about having to have two

nurses.

----------

> From: Rysu19@...

> egroups

> Subject: Re: [ ] Re: My Remicade Infusions

> Date: Wednesday, September 13, 2000 4:15 PM

>

>

> No cold. I was just a weird achy. Whew! Believe me, I know about calling

> them. My nurse Barb is very strict with us. If she suspects anything, she

> sends us to see a doctor while there! It's almost annoying!

>

> I know why I take the benedryl. It is a precaution so I don't get sick,

> nauseous.

>

> ~Rainy Sue

>

> > Hi Sue,

> > If you think you are getting a cold, you need to call your doctor

right

> > away. This is what the nurses told me at my first treatment. She

said

> > even if I just started to cough to call him right away. So be

careful, if

> > you get an infection while on Remicade it needs to be treated right

away.

> > I have all the questions to ask the nurse on Thursday. So I will ask

> > about that Benadryl and why I must always have two nurses.

> > I have appointment with the Rheumy tomorrow, so I will see what he

says.

> > I think we need to do something about the MTX.

> >

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

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

> Our chat room: www.delphi.com/RheumatoidArth1/start