Re: ~Remicade

[Guest guest]

,

I love lilacs, too! My birthday is in May and that's when the lilacs bloom

in our area. The smell of lilacs brings back such fond childhood memories

for me. I have four different varieties in my yard. There is a suburb not

too far from me (Lombard, IL) that has a lilac festival every year.

Wonderful!!! I can almost smell the delightful fragrance now.

When you say you were born on the hill, did your mom make it inside the

hospital, or were you delivered, literally, on the hill???? Just wondering!

Keep those Remicade success stories coming. I'm so happy for you.

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

From: <Rysu19@...>

< egroups>

Sent: Friday, April 28, 2000 6:03 PM

Subject: [ ] ~Remicade

> Hi Everyone,

>

> I wanted to say sorry to everyone (, Tery) who is having problems

with

> the Remicade. Meaning finding someone who will do it. It frustrates me. I

> just got really lucky. Also the fact that where I get it done Oregon

Health

> Sciences University (OHSU) is a big medical school as well and they have

> everything going on. I was born up there on the hill. OHSU is positioned

up

> on a huge hill and the land was donated to them years ago and so that is

> where and why the hospital was built there. But during snowy days, they

> sometimes have to close down the hospital bcs doctors can't even get in.

You

> have to drive up a narrow, steep, curvy hill to get to the building. My

> favorite part about going this time of year is I pass by a huge Lilac

garden!

> My favorite flower in the whole world. (Mom brought me Lilacs for Easter!

> They are still on my desk and smell so good! And they are sooo pretty! I

am

> getting high on their glorious fragrance! I keep leaning over and taking a

> big SNIFF! LOL)

>

> ANYWAY, I didn't have to do a thing to get started for Remicade, my doc

took

> care of it all. Also, OHSU has been doing Remicade treatments just about

> since the time it was approved. They do about 10 treatments a week, on

> various people.

>

> So, anyone who is desperate to start the Remicade, move to my town! And we

> can be Remicade buddies and keep each other company during our sessions!

LOL

>

> I will keep my fingers crossed, which I CAN cross now without forcing them

> with the other hand! I blame it on Remicade! =)

>

> ~

[Guest guest]

Good luck on Thursday, !

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

From: " Valued Compaq Customer " <ruf-caimi@...>

< egroups>

Sent: Monday, August 28, 2000 9:18 AM

Subject: Re: [ ] ~Remicade

> Hi ,

> You are not rambling, you are a good and caring mom. Someone wants the

> best quality life for , you can get. I think it is good you include

> him in all the decisions. Someday the doctors won't talk to you anymore

> and will be well versed in his treatment. Once they reason a

certain

> age, the doctors will talk more to him and less to you. I agree, you

have

> to try these things. I have had a terrible time with side effects, but

> still I will try something new. Thursday, I try remicade. If it works,

it

> works. I will take even a few days of some degree of relief. If it

> doesn't then I wait until something else comes out. I know it may only

> work really well for the baseline, but it is still worth a try. My son

> works for Kline Drug Company, and I understand they are going big

> time into RA research with different drugs. My son works on cancer drugs

> but I know if anything good is happening with RA he will tell me.

> Hope you and both have good days today.

>

[Guest guest]

Hi, !

I hope 's MRI goes well.

That's interesting that you and are related to Calvin Coolidge. Maybe

could be president one day. That would do a lot to raise RA awareness

(although let's hope we've figured RA out by then).

As for the parents who are afraid to let their children try certain drugs: I

think it's a pretty natural response. Yes, you want your child to live a

normal, pain-free life, but what if ten years down the road the drug has

caused serious damage which is worse than that of the RA? All parents of

sick children must struggle with awfully difficult questions, as you know

all too well. Especially with newer drugs like Enbrel and Remicade, we just

don't know what the long-term effects will be. It's also disconcerting that

nobody really has a solid understanding of how the immune system functions.

It's so very complex.

You are lucky to have a doctor whom you like and trust, and that helps you

feel more comfortable with 's treatment (and if I were in your

situation, I would probably want my child to try Enbrel, too). Not all

people feel the same way about their child's doctor. And that causes people

to hesitate and really think about it before allowing their child to have

certain treatments. It may even cause them to be fearful.

I think when we as adults choose to use certain drugs for ourselves it is a

much different decision. When we decide for our children, we come to that

conclusion after much more deliberation.

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

From: <12372101@...>

< egroups>

Sent: Monday, August 28, 2000 9:49 AM

Subject: Re: [ ] ~Remicade

> jesse's dr said that if the Enbrel stops working for him then our med

would

> be Remicade. He has had better results with the Enbrel with children but

he

> researches all new drugs as the are approved and he has heard of some

> wonderful stories of adults reacting well to the Remicade when the Enbrel

> wouldn't work. I wonder if there is something in children that make the

> Enbrel work better. He said that just about every child he has given it

too

> has worked out well. The kids that don't work are the kids whose parents

> refuse to try certain drugs because of the side affects. He also told me

that

> he loves it when i come in with jesse cause my goal is to give jesse a

pain

> free life and if it means trying new things then jesse and i are willing

to

> try it. If the side affects are to much then we take him off. I can't

imagine

> not trying something just because i fear it may not work. I would much

rather

> try it and find out that it doesn't then never try at all. Of course we

don't

> do it unless jesse agrees. He has to be apart of his treatment. I don't

know

> maybe the fear of not trying something that will work for jesse makes me

want

> to try if the dr feels its a good choice and i have so much in jesses dr.

> has had 3 rheumys and this one is the best he has ever had. i would

> travel cross country to keep this dr.One other thing about some parents

with

> kids that have JRA is that they for some reason think that the dr is going

to

> cure the child and when they try lots of treatments it sinks in that there

is

> no cure and then they kind of give up and try to protect the child by

being

> afraid the side affects will make the child sicker. for the most part side

> affects will go away within a couple of months if there is a serious

problem

> with side affects then there is reason to stop the med.

>

> It amazes me that parents would rather see their child hurt and suffering

> then to try. for themselves thats ok but not for a child. the way i see it

i

> have to what ever i can to try to help jesse lead a normal life.

>

> sorry for rambling on. now iam off for jesses MRI.

> take care,

> shelly

[Guest guest]

;

I am on MTX and had stomach problems all the time. Now I take my MTX by

injection. Really and truly, it does not hurt at all. I do it myself and my

stomach is so much better. You might want to talk to your dr. about that

possibility.

Jeannette

[Guest guest]

:

At least you lose weight. I wouldn't even lose weight. That was even more

frustrating. All that agony and I still would not lose weight. The MTX is

actually less expensive in a vial too. I still get very tired the first

couple of days after injection but my stomach does just fine. Good luck.

Jeannette

[Guest guest]

/

I am happy that all turned out well. There is nothing stronger than a

mother's instincts.

a

We would love to see them.

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

From: Headley <sheadley@...>

< egroups>

Sent: Monday, August 28, 2000 3:50 PM

Subject: Re: [ ] ~Remicade

> If I could remember where a said to go to upload pix, I would upload

> birth pix, and recient pix of twins. It does give enormous hope to see

> them side by side. When I returned home after my daughter gave birth,

> she made me get on Internet and print all pictures of " before and

> after " , and stories from other Mothers of preemies. It really

> encouraged her.

> Susie

>

> ednettieolson@... wrote:

>

> > Susie,

> >

> > What a great spirit lifting story. I am so happy the twins are doing

> > good.

> >

> > Jeannette

> > -----------------------------------------------------------------------

> >

> > -----------------------------------------------------------------------

> >

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

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

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

>

>

>

>

>

[Guest guest]

Hi Rainy Sue,

I am on Metho, clinoril, darvocet and predisone. I think maybe the meth,

doesn't like to much anymore. The Rheumy said he was running some liver

test, I think the nurse called it a smack. I haven't heard anything so

far. I just feel sick to my stomach all the time, he wanted to make sure

the liver was okay. I know I may have to have the treatments every six

weeks, that is okay. This summer has been hard between the pain and

fatigue. Since vacation the fatigue has been a real problem. I am looking

forward to Thursday, even if I get only a little relief it will be worth

it. I really don't think this whole mess with WC is helping anything.

I was glad to read you are doing well? How is the writing coming

along???

----------

> From: Rysu19@...

> egroups

> Subject: Re: [ ] ~Remicade

> Date: Monday, August 28, 2000 5:10 PM

>

> Hi ,

>

> I have had 5 treatments now and the Remicade is working beautifully. All

my

> friends and family can see how much happier I am. I have had 5 treatments

> now. I go for my 6th on September 18. I think it's Sept 18, better check

at

> some point! But I did learn that the Remicade didn't work for me very

well

> while I was trying the MTX with it. It was horrid. But as soon as I

switched

> back to Arava both meds really began to work. I know the Remicade is

working

> bcs I restarted the Arava and it was a couple weeks until my next

Remicade

> and when I got it, I got even more relief. So I know it isn't just the

Arava

> working. I will go every 6 weeks for Remicade now. What DMARD are you on?

I

> ask bcs if you get no relief from the Remicade, I am wondering if you

switch

> DMARDs around while on the Remicade that it will work like it did for me.

> That may be something to keep in mind. Along with the fact that my doc

OK'd

> it for every 6 weeks.

>

> ~Rainy Sue

>

>

> << Thursday, I try remicade. If it works, it

> works. I will take even a few days of some degree of relief. If it

> doesn't then I wait until something else comes out. I know it may only

> work really well for the baseline, but it is still worth a try. My son

> works for Kline Drug Company, and I understand they are going big

> time into RA research with different drugs. My son works on cancer

drugs

> but I know if anything good is happening with RA he will tell me.

> Hope you and both have good days today.

>

> >>

>

>

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

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

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

[Guest guest]

Thanks ,

I figure it is worth a try. I started classes on Wednesday, so I think I

will miss my class on Thursday. I will have to call the professor and

explain that I will be at the hospital. Forgot about school when I set up

the reimicade treatment. I know I am going to hate being a day student, it

will mess things up. Like my first class for this subject. I know the

teacher so there will really will be no problem.

Hope you are having a good day.

\

----------

> From: Matsumura <Matsumura_Clan@...>

> egroups

> Subject: Re: [ ] ~Remicade

> Date: Monday, August 28, 2000 12:11 PM

>

> Good luck on Thursday, !

>

>

>

> ----- Original Message -----

> From: " Valued Compaq Customer " <ruf-caimi@...>

> < egroups>

> Sent: Monday, August 28, 2000 9:18 AM

> Subject: Re: [ ] ~Remicade

>

>

> > Hi ,

> > You are not rambling, you are a good and caring mom. Someone wants the

> > best quality life for , you can get. I think it is good you

include

> > him in all the decisions. Someday the doctors won't talk to you

anymore

> > and will be well versed in his treatment. Once they reason a

> certain

> > age, the doctors will talk more to him and less to you. I agree, you

> have

> > to try these things. I have had a terrible time with side effects, but

> > still I will try something new. Thursday, I try remicade. If it

works,

> it

> > works. I will take even a few days of some degree of relief. If it

> > doesn't then I wait until something else comes out. I know it may only

> > work really well for the baseline, but it is still worth a try. My son

> > works for Kline Drug Company, and I understand they are going big

> > time into RA research with different drugs. My son works on cancer

drugs

> > but I know if anything good is happening with RA he will tell me.

> > Hope you and both have good days today.

> >

>

>

>

>

>

>

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

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

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

[Guest guest]

Hi Again,

When I go in for my Sept 18 treatment. Nurse will be on vacation so

Nurse Barb will be all alone, to work on 7 patients. I may end up being there

even longer because of that.

~Rainy Sue

[Guest guest]

Sue,

They are very strict about the two nurse rule. I was suppose to have the

treatment after next week in four weeks but I have to wait an extra week.

One of the nurses will be on vacation, so they won't do it. It is hard to

fit it in with them because of it being only one at a time. They weighed

me, I couldn't do it myself. The room is so small that the treatments are

done in, they couldn't fit anymore people. Well Thursday is my next

treatment. I will definitely keep you posted. I see we have another

person on remicade. We should all compare notes.

Have a good night.

----------

> From: Rysu19@...

> egroups

> Subject: [ ] ~Remicade

> Date: Thursday, September 07, 2000 10:47 PM

>

>

> Hi ,

>

> This helps a lot!! I plan to talk to my doc about the amount of time it

> takes. Not to mention, it probably takes longer because there are only 2

> nurses for about 7 people. I don't think that is fair to the patients.

Our

> time does means something! We aren't just bags of skin for people to put

> needles in. In fact, it is so busy, the nurses don't get a real lunch

break,

> or any break! They eat in the little office connected to the treatment

room

> in between taking vitals and hooking up other patients. I also get

Tylenol

> with the Benedryl. But I am going to tell my doc I will not take the

Benedryl

> anymore. It makes me absolutely miserable! During or after your treatment

did

> you feel any nausea?

>

> Geez, you get there at 9 and are out by 12:30. I get there at 8:15 and am

out

> by 1:30. RIDICULOUS!

>

> I think the sodium chloride is there to help dilute the Remicade as it

goes

> in. That really takes no time at all to drip on in.

>

> I am also weighed " every " time. When we get there, the patients, we go

weigh

> ourselves and when the nurse comes around to hook us up she asks what we

> weighed in at. And they ask if there have been any changes in meds, any

> unusual side effects, if we've seen our RD since the last visit, what

> happened there, etc. What our energy is like, if we think the Remicade is

> working and when it started to work and when it wore off. They want to

know

> everything. Which is good. I really like my nurses.

>

> Thank you , this really helps. I plan to call my doc before the 18th

and

> have my reasons why I don't want Benedryl and other peoples experiences

with

> me to show him I've done my research. And that 5 1/2 hours is STUPID! He

told

> me before I started it would take about 4 hours. I read about 3 hours. No

> where does it say 5 1/2 hours. And I've been there up to 6 hours! Arg!

Not to

> mention, this messes up my Mom's or Ryder's day as well, since I have to

get

> a ride to and from.

>

> ~Smiles

> ~Rainy Sue

>

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

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

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

[Guest guest]

Sue,

When I go on Thursday I will ask my nurses why they are so strict about

having two people. I am interested knowing why. I will ask them about you

having to have Benadryl.

----------

> From: Rysu19@...

> egroups

> Subject: Re: [ ] ~Remicade

> Date: Thursday, September 07, 2000 11:28 PM

>

>

> Hi Again,

>

> When I go in for my Sept 18 treatment. Nurse will be on vacation so

> Nurse Barb will be all alone, to work on 7 patients. I may end up being

there

> even longer because of that.

>

> ~Rainy Sue

>

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

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

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