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THANKS I DO FEEL SO MUCH BETTER. I REALLY HOPE THIS CONTINUES. AND I WISH I

COULD SHARE THIS WITH EVERYONE IN PAIN

kathy

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I hope she does too. I probably should not have butted in but she just

can't have this done in any hospital, especially Warminster. The endo is

not as bad as the ERCP but you are still put to sleep. After I had it done

I felt bad for about 10 days afterwards. I know I'm not a good one to

judge this procedure with.

Mom

----------

> From: Stacey T <StaceyT@...>

>

> Subject: [ ] Remicade

> Date: Wednesday, August 22, 2001 11:02 PM

>

> Hello! It has been a while since I have posted here! Life just started

going too fast, and time just got away from me. Anyway, I am also

starting Remicade! Yeah! I have been trying to start it for a while, but

my HMO wouldn't cover it. Everytime I asked they said it wasn't covered.

Well, This last time in to my Rheumy, I asked again, and he said they

were starting to cover it in special circumstances. He made some calls,

and then told me I was approved! So I must be special... :-)

>

> I am just hoping that it works for me. It is really my last hope as I

have failed all the other DMARDS out there.

>

> Let's see what else have I been up to? I had my ERCP, it went off

without a hitch. He was able to cut into the bile duct and dislodge the

gall stone that was being elusive.

>

> I am going for an ultrasound of my Pelvic area next Thursday, have been

having the period from hell...

>

> But thats my life in a nutshell... Just so excited to be starting the

Remicade! I will try to post more often and be more active in this group,

because you are all a wonderful support system!

>

> Stacey

> --

>

> _______________________________________________

> FREE Personalized E-mail at Mail.com

> http://www.mail.com/?sr=signup

>

> Talk More, Pay Less with Net2Phone Direct®, up to 1500 minutes free!

> http://www.net2phone.com/cgi-bin/link.cgi?143

>

>

>

>

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well tonight after i did my physical therapy exercises, dan said my scar

looked bad. i looked closer and it looks like it split and is infected. now

it is sore. i have cleaned it with hydrogen peroxide, put some gause on it

and wrapped it back up. i have been on antibiotics for 17 days already. i

know that remicade can cause infections, but the last time i took that was

june 26th. wonder how long??? kathy in il

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Kathy,

I'm a Remicade flunky. I had three infusions and had no results. I was told

that I " should " notice a difference after the third infusion. I was my RD's

second patient to be put on it (when I stopped it he had 7 patients on it and

only 2 of us that it didn't help). I had made up my mind that Remicade was

going to be my " miracle " drug, and what a let down when it wasn't, even

though my RD had warned me not to get my hopes up. It has done wonders for a

lot of people. I'm crossing my fingers that you will be one of those.

How long did it take you? Most time the first appt is the longest because

you have to do all of the paperwork. My RD had done everything ahead of time

for me so all I had to do was show up. My infusions lasted about 2 1/2 hours

each, then I had to wait there for about 30 minutes to make sure that I

didn't have any reactions.

I can't remember are you taking mtx or Arava? Best wishes. Tery - FL

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i felt mine driving home that day!!! flew for about 3 days. it was great.

unfortunatly thats about all it did for me. but they do say it takes some

time to build up in your system. kathy in il

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I take arava. I was wondering though how long does it take before you know if

its working?

Kathy in Fla

tpeppergirl@... wrote: Kathy,

I'm a Remicade flunky. I had three infusions and had no results. I was told

that I " should " notice a difference after the third infusion. I was my RD's

second patient to be put on it (when I stopped it he had 7 patients on it and

only 2 of us that it didn't help). I had made up my mind that Remicade was

going to be my " miracle " drug, and what a let down when it wasn't, even

though my RD had warned me not to get my hopes up. It has done wonders for a

lot of people. I'm crossing my fingers that you will be one of those.

How long did it take you? Most time the first appt is the longest because

you have to do all of the paperwork. My RD had done everything ahead of time

for me so all I had to do was show up. My infusions lasted about 2 1/2 hours

each, then I had to wait there for about 30 minutes to make sure that I

didn't have any reactions.

I can't remember are you taking mtx or Arava? Best wishes. Tery - FL

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Tery,

Don't feel bad, I am a Remicade dropout too! I had 4 infusions but needed

to go to a higher dose for it to work but didn't because of my multiple

surgeries. I did have a hives reaction last time too. I'm back to Enbrel

which I like because I control it myself. It does work on some symptoms

(fatigue -a big one) and some lesser involved joints. Now I'm hoping to

regain energy and have my fake knee fully functional. I could never take

the methatrexate or arava-surgeon vetoed it because I'm prone to infection.

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when i was getting remicade. i was there about 2 1/2 hrs. sometimes 3 hrs

because they tried to slow the drip since i was having hives. they never kept

me after. walk in. get seated and she went to mix it. kathy in il

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I get there, she puts me on a sodium chloride (something or other) drip. She

waits for that to drip through, she calls down for them to mix my cocktail.

Finally after being there about 45 minutes, I get my Remicade. She keeps it

on very slow! A turtle moves faster than my drip. Then she makes me stay 30

minutes to see if I react. I have never had any reactions in 2 years. She

should promote me! Grumble, thinking about it all makes me mad.

~Rainy NW

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

From: <kringlemom@...>

> when i was getting remicade. i was there about 2 1/2 hrs. sometimes 3 hrs

> because they tried to slow the drip since i was having hives. they never

kept

> me after. walk in. get seated and she went to mix it. kathy in il

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Hi Rainy...Can you speak to her about this? I would bring it up.

Perhaps there is a good reason why she does it so slow. If not, then

she should do it in a more reasonable amount of time.

Hugs of Hope...

NW Tess

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Hi Tess,

I have talked to her. You don't tell this woman anything. I would bet her

middle name is " control. " I will talk to my doctor, he listens. I just can't

handle staying that long anymore. It really wears me out. I can always say,

I can go elsewhere. But I am sure they would rather have the money. I'd

rather get it where I am getting it because all my doctors are there. I'll

let you know what he says.

~Rainy :)

Re: [ ] Remicade

> Hi Rainy...Can you speak to her about this? I would bring it up.

> Perhaps there is a good reason why she does it so slow. If not, then

> she should do it in a more reasonable amount of time.

>

> Hugs of Hope...

>

> NW Tess

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Hello Tess, Rainy, and lie,

About the time it takes for a Remicade infusion; my experience is it just

takes 2 1/2 to 3 hrs. each time. I just had my 5th on February 13. I arrived

at 8:45 am, went to get blood drawn for lab, came back saw the Dr. and he

gave the OK for my treatment so it was about 10:00 am when I got to the room

where they do the infusions. So it was about 10:15/10:30 when I finally got

started and it was 1PM when I finished up. This has been pretty typical to

the other 4 treatments.

This time I did have another lady in there who did talk with me (the last

time the lady that was there with me slept the whole time) ; this made the

time pass so much better.

The lenght of time hasn't bothered me too much, as this is about the lenght

of time to receive a chemo treatment; of whch I was given 8 of those last

year. I carry a snack with me and something to read just in case I'm by

myself.

I haven't had any side effects from the Remicade that I'm aware of. I am so

thankful to feel as well as I do.

Be Blessed,

Becky

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the only time i had to see my doc is when i was breaking out in hives. then

they scheduled my next dr appt for during my next remicade so hopefully the

dr would see me break out. but it never worked that way. infection came and

that was my last infusion. kathy in il

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i never rec'd anything from remicade, but i got 4 insulated bags from

enbrel!!! kathy in il

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On a non-serious topic. I haven't used remicade for over a year and they keep

sending me presents. I do use Enbrel and haven't gotten any gifts from them!

Temple

3 Fox Haven Way

Chelmsford, MA 01824

dat2352@...

http://www.homestead.com/kuddlekrittersfarm/index.html

http://www.homestead.com/kuddlekrittersdairygoats/index.html

http://www.homestead.com/kuddlekraft/index.html

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Hi ...I've been off Enbrel for about 4 months now, and just got my

coffee mug from them. So far from Remicade, I've received a tote bag,

and an inflatable neck pillow. : )

Hugs....

Tess

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How do you get the gifts from taking Remicade; I've had 4 infusions and

haven't received narry a thing. Is that under one of the trial programs or

what????

Be blessed,

Becky

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Don't know how they started coming but they did. Now the Enbrel is more obvious

since you need to be an Enbrel member to even get it but I haven't gotten any

gifts from them.

Temple

3 Fox Haven Way

Chelmsford, MA 01824

dat2352@...

http://www.homestead.com/kuddlekrittersfarm/index.html

http://www.homestead.com/kuddlekrittersdairygoats/index.html

http://www.homestead.com/kuddlekraft/index.html

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Hi Louise,

Tuesday, I see the hematologist who does the Remicade infusion and will also

discuss my blood situation. My rheumatologist does not have the infusion set

up in his office, so he " farms " us out to another physician. I think when I

saw my rheumy last Monday, he became very preoccupied with the blood results

that he may have missed something and everything else just kinda went by the

wayside. My rheumy shares an office with two pulmonologists and it is a

crazy place there even on a slow day. I can't even imagine if he did the

Remicade in his office.

I have to agree with you, pain pills and sometimes any medication that is

taken on a regular basis, does lose its efficacy. Pain pills are a band aid

solution on a short term basis and then if you call for a refill, you are

labeled as drug seeking, so it is a no win situation.

Hope you have a wonderful weekend that is pain free. It was liquid sunshine

and clouds all day for us folks in South Florida! Oh well, maybe tomorrow

the sun will shine on us!

Saturday night angel hugs,

Debs in FL

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i only had 3 treatments, but i was flying for 4 days very little sleep. 3 am

wall washing episodes!!! good luck kathy in il

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on 1/28/03 9:54 PM, mary parker at mary6621@... wrote:

> I will be starting Remicade soon myself. I have failed methotrexate, arava,

> plaquenil, sulfasalazine,celebrex, prednisone, enbrel.Im a weird case.

> Anyone who takes Remicade, can you tell me what to expect the first time?

> Thanks.

, you mean to say that prednisone did not help your pain?

Sue

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,

Wow, you sound like me. I too have failed methotrexate, plaquenil, and

sulfasalazine. I did prednisone and it does make you feel good, but it was not

a med I wanted to stay on. I am on Vioxx 25mg which I feel is not really

helping. I know I can go up to 50mg but haven't. I am on Enbrel and have not

had any relief since being on it since the first of September. I have been on

Arava for 1 month and no relief yet. All lab looks good as of Monday this week.

I really don't want to go on Remicade, but that is what my rheumy told me would

be the next step. I refuse to go on any pain meds due to the easibility of

becoming dependent on them. I did however get a form filled out by my PCP to

get a disabled parking permit.

My RA is mainly in my right foot and right ankle. I am a nurse on my feet all

day with sitting as much as I can. I have learned that limping is my new way of

walking.

Let me know how the Remicade is for you.

Terri

[ ] remicade

I will be starting Remicade soon myself. I have failed methotrexate, arava,

plaquenil, sulfasalazine,celebrex, prednisone, enbrel.Im a weird case.

Anyone who takes Remicade, can you tell me what to expect the first time?

Thanks.

in O town

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Welcome . Yes Remicade has been discussed regularly. We have some

members that have done well and others that have had problems. What meds

have you already tried? My personal thoughts are that Enbrel should be

tried before Remicade. They work in a similar manner, but Enbrel is given

by self injection twice a week. It stays in your system for only a few days

whereas Remicade stays in your system for several weeks.

There is much less chance of reaction with Enbrel. Then there is the

infection risks to consider. Both Enbrel and Remicade can make you more

susceptible to infection, but with Remicade the risk may be higher. If you

have problems with chronic infections, you may want to consider not taking

either of them.

a

> Hi!

>

> I just joined and I am sure this subject has been discussed a lot,

> but my doctor wants to go on Remicade and all the info my DH has

> found make me want to really think about it. There just seems to be

> so many things that can go wrong if you are on it.

>

> All thoughts and opinions appreciated.

>

>

> Bethel Park, PA

>

>

>

>

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In a message dated 15/01/2004 10:21:17 Central Standard Time,

b.durbin@... writes:

> Is Remicade used frequently or has

> everyone given up on it?

Remicade is working very well for me so far. I started it last summer. I

don't always feel fantastic, but boy am I better with it than without it! I

have had no infections, though...there are others who have had a heck of a time

with infections on Remicade. Personally I'm very grateful for it so far...

Cary

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