Remicade Treatment

July 31, 2002

Just got home from my first Remicade Treatment. I am having MIXED feelings about

this. During the treatment I had no reactions at all.I watched a two hour movie

while they did the treatment. I left the Doctor's office thinking well not

feeling anything yet. But as I drove home ( it is a two hour drive for me) I

could feel things starting to limber up, just that FAST . I am pretty amazed.

First thing I noticed is that I could turn my neck around in the car. Anybody

with AS knows this is almost impossible to do. My back doesn't hurt as much

driving either. My tendons and muscles feel like a fern that is starting to

uncurl. Very weird feeling. The only drawback is my feet. My feet would hurt if

I overdid it before, but otherwise they were pretty quite. Well now the tendons

or muscles on top of my foot where it connects to your leg are starting to

uncurl or be less stiff. This is creating some pain in my feet for me, why I do

not know. Anybody have any ideas what is going on with my feet? I have arthritis

and some neuropathy in my feet on the tops, but even though they were stiff, as

long as I did not over do or walk too much they remained pain free. Now the

nerves are starting to wake up and my feet are killing me. Maybe I would be

better off stiff. I do not like the feeling of the nerves in my feet like a

tingling feeling. I hope I feel better in the morning, but if my feet are going

to behave this way on Remicade I may have to stop it. It's sad because the rest

of me is feeling better. But if your feet hurt what can you do. Any others here

have joints come alive for the worse on Remicade? Maybe it will pass and things

will improve with time on the Remicade? I didn't read where people with

neuropathy should not take Remicade.

Connie NC

August 6, 2002

From: kisada1@...

sorry ive been quiet alot has been happening, just got my first remicade

treatment today so with luck i should start feeling better soon

********************************************

So you just received your very first Remicade infusion. How are you

feeling? Have you noticed any difference yet? It might take 24 hours or

even a few days to notice something but then again I have heard from people

who have noticed a change immediately. It has taken me usually a few days

before I feel some relief from it. Just saw the Rheumy the other day and he

has requested that I have the Remicade every six weeks now instead of every

eight weeks. It just never seemed to last the full two months before the

next infusion as I was swelling up half way through (4 weeks). So will have

to see if this makes a difference. I'm curious to know if this will have

any affect on your appetite as when I was starting Remicade I found myself

always hungry, hungry, hungry but that was mainly when I was on the

" loading " dose and now that I have been on it for almost a year I find that

my appetite isn't as bad as when I first started the Remicade.

I do hope this treatment works for you and that you feel the benefits from

it real soon.

Take care,

Marilyn

mhogg69@...

_________________________________________________________________

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August 15, 2002

well its been almost two weeks and i haven't felt any change yet, but the

doctors say i may not feel a change untill the 2nd or 3rd treatment.

i wish it did make me hungry ive lost alot of weight since i first got

stills. well im praying that ill start feeling better soon

August 15, 2002

Kisada1,

sorry to hear that you have not noticed any difference yet since your first

infusion of Remicade but it might be the reason why we need a loading dose,

you know 1st infusion then 2weeks later another, then 6 weeks later another

and then every two months (something like that). So hang in there and let's

see if the next few infusions don't make a difference! Sorry to hear that

you are losing weight, now if only you could let me lose the weight for you

then I would gladly give you the weight that I would love to lose!!!!LOL

Marilyn

From: kisada1@...

well its been almost two weeks and i haven't felt any change yet, but the

doctors say i may not feel a change untill the 2nd or 3rd treatment.

i wish it did make me hungry ive lost alot of weight since i first got

stills. well im praying that ill start feeling better soon

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

August 20, 2002

Dear Stilligans Hello to all, hello to you also new

member kisda1aol (DOT) I took my 5th remicade on July

24th. Up until then I only remotely felt better with

it, I became very ill and was hospitolized on the 29th

of July, with what my Dr. felt was a combination of

Still's disease relapse, infection and working to

hard. I only wok 20 hours a week as a Social Worker in

a hospital and Hospice. I had so hoped that the

remicade was the miracle drug I had been waiting for.

I was diagnosed with Still's 3 years ago, I don't know

how long I had it before then. But since I have been

diagnoised I've been in the hospital 3 times and of of

work for at least a month or so after

hospitalization.I am scheduled to have another

remicade on Sept. 4th, and frankly I am a little

nervous, it seems so many people have good luck with

the remicade, I hope that you are one of the lucky

ones. I would also like to know from anyone who's

reading this if they can help me to start getting help

with disability. Where do I go what do I do first?

Also when I did have this relapse my ferritin level

was normal, now I don't know what to think. My Dr.

pumped me so full of Solu-medrol and antibiotics that

I am wondering if the feritin level was down because

of that. any thoughts out there. Your friend Kathy

VanVickle from MN

--- kisada1@... wrote:

> well its been almost two weeks and i haven't felt

> any change yet, but the

> doctors say i may not feel a change untill the 2nd

> or 3rd treatment.

> i wish it did make me hungry ive lost alot of weight

> since i first got

> stills. well im praying that ill start feeling

> better soon

>

> [Non-text portions of this message have been

> removed]

>

August 20, 2002

Dear Stilligans Hello to all, hello to you also new

member kisda1aol (DOT) I took my 5th remicade on July

24th. Up until then I only remotely felt better with

it, I became very ill and was hospitolized on the 29th

of July, with what my Dr. felt was a combination of

Still's disease relapse, infection and working to

hard. I only wok 20 hours a week as a Social Worker in

a hospital and Hospice. I had so hoped that the

remicade was the miracle drug I had been waiting for.

I was diagnosed with Still's 3 years ago, I don't know

how long I had it before then. But since I have been

diagnoised I've been in the hospital 3 times and of of

work for at least a month or so after

hospitalization.I am scheduled to have another

remicade on Sept. 4th, and frankly I am a little

nervous, it seems so many people have good luck with

the remicade, I hope that you are one of the lucky

ones. I would also like to know from anyone who's

reading this if they can help me to start getting help

with disability. Where do I go what do I do first?

Also when I did have this relapse my ferritin level

was normal, now I don't know what to think. My Dr.

pumped me so full of Solu-medrol and antibiotics that

I am wondering if the feritin level was down because

of that. any thoughts out there. Your friend Kathy

VanVickle from MN

--- kisada1@... wrote:

> well its been almost two weeks and i haven't felt

> any change yet, but the

> doctors say i may not feel a change untill the 2nd

> or 3rd treatment.

> i wish it did make me hungry ive lost alot of weight

> since i first got

> stills. well im praying that ill start feeling

> better soon

>

> [Non-text portions of this message have been

> removed]

>

August 20, 2002

Kathy,

I'm sorry you are having such a hard time of it lately. I, too, went into a

severe spiral downward after 3 yrs of being diagnosed. I was in the doctor's

office and in severe flares more than I was at work. I ended up pushing myself

until I almost dropped for good.

As for disability: The first step is to have your doctor sign you out of work,

stating that you have deteriorated to the point where gainful employment is

either not possible, or potentially life threatening. Next is the filing

process.... you could try and file yourself; however, you end up getting denied

and finding a lawyer. My suggestion would be to find a lawyer right off the bat

and allow him/her to fight the battle for you. They know the " loopholes " and

how to work the system to your advantage. There are lawyers out there who will

not charge until you win your case. Also, make sure your doc has VERY detailed

reports on you (the more details, the better -- it will prove your case) and

also supply the lawyer with all information you can get on stills (printouts,

web addresses, etc).

Unfortunately, this is an extremely long process.....over a year (mine took a

year and a half, but that is not the " norm " ). I was lucky enough to have bought

into extra disability insurance thru work and that has been my income since I

stopped working in Jan. 2001.

If you want to talk more about it, please feel free to email me separately...

Take care,

Chris

greywolf70@...

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

I would also like to know from anyone who's

reading this if they can help me to start getting help

with disability. Where do I go what do I do first?

Your friend Kathy VanVickle from MN

August 20, 2002