remicade

[Guest guest]

I have been on remmy in the past and it was good for me. I have been off

it now for a year or so and am trying glucosamine. But it didn't have a

lot of bad side effects except we had to watch my liver enzy mes.. I would

have a little headache during infusion at times and feel flu=ish

afterwards at some points.. but nothing major in my case..

I'm just trying to work with glucosamine and see how it will be for me.

On Mon, 13 Feb 2006, jimmz wrote:

> Can anybody help me with this? I have a friend and he has crohn's. His doctor

told him it would be a good thing for me, maybe to try seeing how my reiters has

gotten bad. Any suggestions or people out there that are on it or have tried

it..........

>

Jim

>

Kilpatrick

On the banks of the Mighty Mississippi River, Davenport,IA/Quad cities

~~~~~~

" People will forget what you said, people will forget what you did, but

people will never forget how you made them feel. " ~~~~~~~ Maya Angelou

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

EMAIL: juliette@...

PERSONAL HOMEPAGE PAGE http://members.tripod.com/~LizK

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Guest guest]

Hi Alison,

I either developed neuropathy while on remicade or else it was made

substantially worse bt the drug. Most of all my numbness and tingling

cleared up when I switched to enbrel from remicade. It was too bad

too...I loved the remicade otherwise.

best,

marti

>

> I haven't posted in awhile. I was switched from Enbrel to Remicade

> last August and my rheumy neglected to tell me about all the possible

> side effects I could experience. Like, feeling like I had the flu

for

> 3 days after my first treatment. GI upset for 3 weeks after my

> treament, screwing up my menstrual cycle. I was also just diagnosed

> with neuropathy in both of my feet last year. I have decided to go

off

> the Remicade (it did a fanstastic job of clearing up my psoriasis on

my

> toe and finger nails)and going on Humira. I want to go back on

> Enbrel. Does anyone in this group have PA and neuropathy?

>

> ALison

>

[Guest guest]

Yes, I have been there done that, and the remicaid did work for me, why am I

not on it now? my veins are non existant for IV's... so its no longer an

option for me... but it did work really well..

On 7/25/06, janet <fam24@...> wrote:

>

> I used to be a regular on this board but haven't posted for some time.

> I have PA and fibro and have tried almost everything. ENbrel and

> Humira did not work. My rheumy wants me to start Remicade next week.

> He said that even though the others dd not work that this may. I

> wanted to know if anyone else had tried Remicade after all else has

> failed.

> Janet

>

>

>

[Guest guest]

I used Remmy first. I had to because enbrel supply was low back at that

time. And it proved to work very well for me! I could tell an immediate

difference with the pain in my hands! And it continued to work well for

four years. I got off it due to a glitch when we moved and meantime I

tried glucosamine which has worked wonders for me personally. But if I

need to go back on remmy someday I would be happy to!

On Tue, 25 Jul 2006, janet wrote:

> I used to be a regular on this board but haven't posted for some time.

> I have PA and fibro and have tried almost everything. ENbrel and

> Humira did not work. My rheumy wants me to start Remicade next week.

> He said that even though the others dd not work that this may. I

> wanted to know if anyone else had tried Remicade after all else has

> failed.

> Janet

[Guest guest]

I have a friend that uses Remicade and after the infusion she goes home and goes

to bed. She also bruises very easliy while on the medicaton. Now for it it

works great!!! Her daughter uses Humira and loves it. Now as for me my

insurance does not cover enough on the Humira and they approved for me to do

Remicade. I am a big baby I guess and I haven't started it. I really don't

know about having to go every 8 weeks or so and sit in a Dr's office for a few

hours while the infusion in taking place. I know I know one will do what they

have to do to get out of some pain and that is so true. I have agreed with my

Rheumy that my next flair that puts me down like the one in April did I will let

her see and we will go from there. My Rheumy has never seem me when I was in a

flair. She saw me after now my PC Dr has and we have to go through all of that

junk on getting referral's to go to the Dr a Specialist that is like a Rheumy.

Soooo..... by the time they could get me in I

was not inflaimed or swollen and in pain. She could only go by my History and

the two patches on Psorisis on me that determined PsA. We only in the city on

Louisville Ky have 6 Rheumy's that is totally nuts!!! That is why you need

referalls because the Dr said one day they had a woman that came to them and

wanted to be treated for HOT FLASHES!!!! They want to make sure that when you

come you are there for a true reason.

Have a great day

I love all of you guys

Tammy

Kilpatrick <juliette@...> wrote:

I used Remmy first. I had to because enbrel supply was low back at

that

time. And it proved to work very well for me! I could tell an immediate

difference with the pain in my hands! And it continued to work well for

four years. I got off it due to a glitch when we moved and meantime I

tried glucosamine which has worked wonders for me personally. But if I

need to go back on remmy someday I would be happy to!

On Tue, 25 Jul 2006, janet wrote:

> I used to be a regular on this board but haven't posted for some time.

> I have PA and fibro and have tried almost everything. ENbrel and

> Humira did not work. My rheumy wants me to start Remicade next week.

> He said that even though the others dd not work that this may. I

> wanted to know if anyone else had tried Remicade after all else has

> failed.

> Janet

[Guest guest]

>

> > I used to be a regular on this board but haven't posted for some

time.

> > I have PA and fibro and have tried almost everything. ENbrel and

> > Humira did not work. My rheumy wants me to start Remicade next

week.

> > He said that even though the others dd not work that this may. I

> > wanted to know if anyone else had tried Remicade after all else

has

> > failed.

> > Janet

>

Thank you for answering my question. I am a little nervous to try

Remicade. Are there any side effects to the IV infusion? It just

sounds scary to me.

janet

[Guest guest]

I had a little headache usually during the infusion. My BP shot up a time

or two so then they had me take an antihistimine beforehand. No moreo

problems.

I sometimes felt alittle flu-ish for a day or two afterwards but that

effect went away over time....

On Wed, 26 Jul 2006, janet wrote:

>

> >

> > I used Remmy first. I had to because enbrel supply was low back at

> that

> > time. And it proved to work very well for me! I could tell an

> immediate

> > difference with the pain in my hands! And it continued to work well

> for

> > four years. I got off it due to a glitch when we moved and meantime

> I

> > tried glucosamine which has worked wonders for me personally. But

> if I

> > need to go back on remmy someday I would be happy to!

> >

> >

[Guest guest]

In a message dated 7/25/2006 4:23:43 P.M. Pacific Daylight Time,

fam24@... writes:

I used to be a regular on this board but haven't posted for some time

Janet, how are you? I was wondering about you recently, glad to see you

surface...:-)

[Guest guest]

In a message dated 7/27/2006 2:47:21 A.M. Pacific Daylight Time,

footballmom2455@... writes:

I am a big baby I guess and I haven't started it. I really don't know about

having to go every 8 weeks or so and sit in a Dr's office for a few hours

while the infusion in taking place.

Hi Tammy, I used to be a big baby too, about Enbrel, giving myself B12 shots

etc. But an IV was the worst for me...I still don't like the stick, or

having the plastic straw in my arm, but (shockingly), the experience gets

easier

each time I go.

I actually kind of like it now...I wrap myself up in the Remicade blanket,

put my feet up, and take a nice long nap. I sleep through the 30min blood

pressure check :-)

[Guest guest]

I didn't mind sitting in the office either:) I aLso slept through most of

it. I used to have it done at the hospital till I got a different dr. and

there I even got a full meal!!!! It was like a little mini-vacation...

On Tue, 1 Aug 2006, rachelviognier@... wrote:

>

> In a message dated 7/27/2006 2:47:21 A.M. Pacific Daylight Time,

> footballmom2455@... writes:

>

> I am a big baby I guess and I haven't started it. I really don't know about

> having to go every 8 weeks or so and sit in a Dr's office for a few hours

> while the infusion in taking place.

>

>

> Hi Tammy, I used to be a big baby too, about Enbrel, giving myself B12 shots

> etc. But an IV was the worst for me...I still don't like the stick, or

> having the plastic straw in my arm, but (shockingly), the experience gets

easier

> each time I go.

>

> I actually kind of like it now...I wrap myself up in the Remicade blanket,

> put my feet up, and take a nice long nap. I sleep through the 30min blood

> pressure check :-)

>

>

>

>

>

[Guest guest]

--- Kilpatrick <juliette@...>

wrote:

> I didn't mind sitting in the office either:)

> It was like a little mini-vacation...

Yep, getting the infusion is almost like an afternoon

at a spa... A bizzare, twisted little spa.

I always schedule mine for the last appointment of the

day. The stick is the hardest part. But then I get

comfy for a couple of hours with a good book, and I

feel so much better afterwards!

I've been on Remicade for 18 months now. It's made a

world of difference for me. I'm still not in

remission, but I'm not in a downhill slide anymore,

either.

--

=====================================================

Stein

WEBSITE: http://www.noblefusion.com/astein

BLOG: http://www.livejournal.com/users/astein142/

-----------------------------------------------------

__________________________________________________

[Guest guest]

> > I didn't mind sitting in the office either:)

> > It was like a little mini-vacation...

>

> Yep, getting the infusion is almost like an afternoon

> at a spa... A bizzare, twisted little spa.

>

> I always schedule mine for the last appointment of the

> day. The stick is the hardest part. But then I get

> comfy for a couple of hours with a good book, and I

> feel so much better afterwards!

>

> I've been on Remicade for 18 months now. It's made a

> world of difference for me. I'm still not in

> remission, but I'm not in a downhill slide anymore,

> either.

>

> --

>

I hope my infusion is ok. I am starting the Remicade soon. I am

very frightened to have the infusion thinking that there may be some

kind of side effect while I am receiving it. Has anyone had anything

happen while taking the Remicade.

Thanks,

Janet

[Guest guest]

>

>

> In a message dated 7/25/2006 4:23:43 P.M. Pacific Daylight Time,

> fam24@... writes:

>

> I used to be a regular on this board but haven't posted for some

time

>

>

> Janet, how are you? I was wondering about you recently, glad to

see you

> surface...:-)

>

>

>

,

It's nice to see a familiar face is still on the board. How are you

doing these days. I lurked for awhile and I am still about the say

but the PA is starting to progress a little more. Enbrel and Humira

were like taking water and did nothing. I will start the Remicade

soon. How are you feeling and what is the drug of choice with you??

Janet

[Guest guest]

Welcome Back... fam24@... writes:

>

> I used to be a regular on this board but haven't posted for some

time

Love and Peace Always

Shaun and Barb

[Guest guest]

Hi Janet...the regimen for me is now Remicade, Sulfasalazine and Voltaren, and I

am doing really, really well. Back to work FULL TIME (moved to Seattle to be at

a company that is a bit less stressful). Although the last few days I have been

feeling so well I forgot to take my voltaren and sulfasalazine, and that was not

smart:-)

Janet, I hope the Remicade works for you. Try not to be too nervous about side

effects...you will be in a really safe environment at the drs office and they

will be there with you if anything were to happen. Other than getting flushed

in the face about 24 hours after each infusion for 10 minutes, I haven't had any

side effects. Be sure to dress warm as the fluid going in will be room temp and

will feel cold to your body at 98.6...

Take good care Janet, and let us know how it goes!

[ ] Re: Remicade

>

>

> In a message dated 7/25/2006 4:23:43 P.M. Pacific Daylight Time,

> fam24@... writes:

>

> I used to be a regular on this board but haven't posted for some

time

>

>

> Janet, how are you? I was wondering about you recently, glad to

see you

> surface...:-)

>

>

>

,

It's nice to see a familiar face is still on the board. How are you

doing these days. I lurked for awhile and I am still about the say

but the PA is starting to progress a little more. Enbrel and Humira

were like taking water and did nothing. I will start the Remicade

soon. How are you feeling and what is the drug of choice with you??

Janet

________________________________________________________________________

Check out AOL.com today. Breaking news, video search, pictures, email and IM.

All on demand. Always Free.

[Guest guest]

Other than getting flushed in the face about 24 hours after each

infusion for 10 minutes, I haven't had any side effects. Be sure to

dress warm as the fluid going in will be room temp and will feel cold

to your body at 98.6...

>

> Take good care Janet, and let us know how it goes!

,

Thanks for all the information. I am starting the Remicade when I get

back from vacation which will bee 8/29. I will let you know how it

goes. I'm glad to hear you are doing well.

Janet)NY

[Guest guest]

In a message dated 26/07/2006 00:23:42 GMT Daylight Time, fam24@...

writes:

I used to be a regular on this board but haven't posted for some time.

I have PA and fibro and have tried almost everything. ENbrel and

Humira did not work. My rheumy wants me to start Remicade next week

Hi Janet,

Welcome back. I hope the Remicade works for you.

I'm sorry to hear about your daughter possibly having an auto-immune disease.

It's not fair is it? I hope they can help her.

Good luck,

[Guest guest]

>

>

> Hi Janet,

>

> Welcome back. I hope the Remicade works for you.

> I'm sorry to hear about your daughter possibly having an auto-immune

disease.

Thanks

Glad to see that there are a few familiar people here on the message

board. How are you feeling and what meds are you taking now?

Hope all is well.

Janet

[Guest guest]

Welcome Back Janet... I am fairly new here so I guess this is our first meeting

lolol...

Love and Peace Always

Shaun and Barb

[Guest guest]

In a message dated 17/08/2006 18:35:37 GMT Daylight Time, fam24@...

writes:

Glad to see that there are a few familiar people here on the message

board. How are you feeling and what meds are you taking now?

Hope all is well.

Hi again Janet,

I am on Enbrel, 50mg injection weekly, MTX 20mg weekly, Folic Acid 15mg

weekly and indomethacine 25mg daily although I don't always have to take the

Indo.

In fact I was supposed to go on to something else but I decided to wait until

I have no Indo left.

Since they introduced the Enbrel I have shown a slow but steady improvement

until recently. I have gone downhill slightly over the last couple of months

but I am looking on it that if I was not taking the Enbrel, etc, I would

probably be going through a major flare so, no complaints

here...........................................................ok there are

always complaints here but I

shouldn't! lol

Thanks for asking.

Take care,

[Guest guest]

I felt a little fluish several days after it for the first few months.

During it I would always get so sleepy and so I just slept through most of

them. I would have a tiny little headache sometimes right between my eyes.

I never got nauseous at all. As for the rash my dr made me take an

antihistimine (I halved the dose as I knew it would make me glassy-eyed to

take the whole thing!!!)--well my second dr did that. It was to prevent an

allergic reaction he said. Even so they watched me very carefully .. well

everyone not just me.

All I know is the first time I had a treatment my hands felt better

almost immediately. The other affects took longer to show up....but the

hands were an encouragement to me right away!

Good luck with yours Janet:)

On Tue, 29 Aug 2006, janet wrote:

> I am going for my first Remicade and I am scared of a reaction. If

> there is a reaction, I am bound to have it. My rheumy's nurse said

> that some people get rashes and some get nauseaus. I know I remember

> someone here said they had a really bad reaction. Can anyone here

> tell me how they felt after their treatment.

> Thanks

> Janet(ny)

>

[Guest guest]

>

> I am going for my first Remicade and I am scared of a reaction.

If

> there is a reaction, I am bound to have it. My rheumy's nurse

said

> that some people get rashes and some get nauseaus. I know I

remember

> someone here said they had a really bad reaction. Can anyone

here

> tell me how they felt after their treatment.

> Thanks

> Janet(ny)

>

Hi Janet,

I've finished my initial 3 infusions of Remicade - next infusion is

Sept. 26. I'm a very " sensitive " person myself (I have asthma) and

am always on the lookout for reactions. At my Dr. they always offer

Benedryl (or Tylenol) before they start the process. I didn't take

the Benedryl before - but think I will the next time. They also

suggest that you have a snack before you begin and I always have

something to drink with me....

After my first infusion I returned to work. I was ok, but did feel

really tired. My Dr. did not like it - but I hadn't scheduled to be

off. On the subsequent visits I have scheduled the infusions for

the end of the day so that I can go home and relax.

On my last visit I had a very slight site irritation, if I had taken

the Benedryl I don't think it would have bothered me at all.

The infusions themselves are a piece of cake. You can read, nap,

etc... I had tried Humira, but it didn't work on my back. The

Remicade is doing much better. I was on Methotrexate as well, but

have had to stop using it because it was really irritating my acid

reflux. So I'll have to see what my Dr. wants to try in conjunction

with the Remicade.

I hope I have helped and didn't give you too much information!

Take care and good luck!

n

[Guest guest]

The first time I had a reaction on my third loading dose of

Remicade. The first two went well. My reaction was short of breath,

chest tightning, and light headedness. That was the first time. I

decided to try Remicade again,,and I again had a reaction, short of

breath, light headedness, and chest tightning,,,except this time my

face swelled and I got some hives. This time the reaction was worse.

The only reason I decided to try it again is because it was the only

time I had ANY relief from the pain. After the first time they said

that they had never heard of anyone having a reaction unless they

had a heart condition so I had an Echo done..no problems that is why

I decided to try it again. Both times I had Zyrtec or benadryl just

in case of reaction.

So needless to say I quit the Remicade. Now on Enbrel and doing

well!

Good Luck with yours I'm sure you will do fine!

>

> I am going for my first Remicade and I am scared of a reaction.

If

> there is a reaction, I am bound to have it. My rheumy's nurse

said

> that some people get rashes and some get nauseaus. I know I

remember

> someone here said they had a really bad reaction. Can anyone

here

> tell me how they felt after their treatment.

> Thanks

> Janet(ny)

>

[Guest guest]

>

> The first time I had a reaction on my third loading dose of

> Remicade. The first two went well. My reaction was short of breath,

> chest tightning, and light headedness. That was the first time. I

> decided to try Remicade again,,and I again had a reaction, short of

> breath, light headedness, and chest tightning,,,except this time my

> face swelled and I got some hives. This time the reaction was worse.

Just want to thank all of you for responding to my question. Today's

Remicade treatment went very well. The nurse was great and talked to

me through the treatment and she premedicated me with Benedryl. I did

not have any type of reaction and went home and slept from I guess the

Benedryl knocking me at. It is probably mind over matter but right now

I feel energetic and less foggy then usual and less stiff. My pain

feels somewhat less as well. I can't believe that one treatment would

do this so I will see how I feel in the next few days.

Janet

[Guest guest]

My Mom and Aunt both take Remicade. They have neither one had any problems.

Good luck with tx.

>

> I am going for my first Remicade and I am scared of a reaction.

If

> there is a reaction, I am bound to have it. My rheumy's nurse

said

> that some people get rashes and some get nauseaus. I know I

remember

> someone here said they had a really bad reaction. Can anyone

here

> tell me how they felt after their treatment.

> Thanks

> Janet(ny)

>

McCarthy

---------------------------------

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