RE: Who's on or been on Remicade/Infliximab?

[Guest guest]

I have been taking Remicade infusions for over a year now. It took about three

treatments to feel a difference, but I did get better. Recently, though, I have

been flaring more and am thinking I either need them more frequently or even my

dosed raised. My next treatment is this week on Wed.

My first infusion didn't go well, I had a reaction and my BP dropped. Since

then, they give me a steroid shot 30 minutes before my infusion to counteract

that and it hasn't happened since. Overall, I'd have to say, other than a

headache that lasts for a couple days, I haven't had any problems. But they do

recommend that you continue the MTX while on Remicade, as it makes the Remicade

work better.

Hope that helps!

Gail

wrote:

It appears the chemo I’m currently on is not taking my joint pain enough and

I’m in hope the next drug up would be Inflximab.

Can people give me their experiences of it and let me know how it effected

your joint pain. Thanks, Steve.

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[Guest guest]

Hi Gail,

I hear it's the best treatment currently available for Stills would you

agree? Also, how often do you have it and does it help with pain

significantly?

Steve

_____

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of Gail

Sent: 15 May 2006 15:23

To: Stillsdisease

Subject: Re: Who's on or been on Remicade/Infliximab?

I have been taking Remicade infusions for over a year now. It took about

three treatments to feel a difference, but I did get better. Recently,

though, I have been flaring more and am thinking I either need them more

frequently or even my dosed raised. My next treatment is this week on Wed.

My first infusion didn't go well, I had a reaction and my BP dropped.

Since then, they give me a steroid shot 30 minutes before my infusion to

counteract that and it hasn't happened since. Overall, I'd have to say,

other than a headache that lasts for a couple days, I haven't had any

problems. But they do recommend that you continue the MTX while on

Remicade, as it makes the Remicade work better.

Hope that helps!

Gail

wrote:

It appears the chemo I'm currently on is not taking my joint pain enough

and

I'm in hope the next drug up would be Inflximab.

Can people give me their experiences of it and let me know how it effected

your joint pain. Thanks, Steve.

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[Guest guest]

Hi Steve

Remicade was my second BRM after I hit a plateau on Enbrel. My IV infusion

nurse said that she saw this a lot in her younger patients...I was 28 I think at

the time. Anyway, I continued to improve after starting Remicade and used it

along with MTX for a while. Then I stopped MTX and just relied on Remicade

every 6 weeks instead of 8, and Arava. I had the usual problems with infection,

but nothing too major. Then, after I had about 20 infusions, something went

horribly wrong. It was a usual morning infusion, and I got there about 10am. I

kicked back in my Lazy Boy and snuggled under the nice little Remicade

embroidered blanket. About 20 minutes into the infusion, I had dosed off and

one nurse came over and turned up the flow on the IV. They do this in

stages...turning up the flow as you go. Anyway, she told me later that she

could see I was sleeping and dreaming...because my eyelids moved. Anyway, she

turned it up and then turned to walk away and I sat straight

up in my chair gasping to breathe. My usual nurse walked in and took one look

at my bright red face and got the other nurses attention. For the next two

hours I was in respiratory and cardiac distress. Felt like someone was

standing on my chest. The doors to the IV department were closed and they

immediately pumped Solumedrol into my iv, but I was already in trouble. Luckily

my RD was in his office down stairs and he ran up to assess the situation. He

ordered nitroglycerin under my tongue twice, got me on O2 and had a bed waiting

in Cardiac ICU. My BP hit 165 over 120 and my pulse was 170.

Finally it subsided and my doctor politely informed me that we would be

changing to Kineret daily injections. The weird thing is that I had just been

arguing with this doc that I could have the infusions closer to my home instead

of his office 50 miles away. He had told me that he knew I had never had any

sign of an infusion reaction, but that he did not feel comfortable with another

facility (that hadn't even heard of Remicade)infusing the drug. He had stressed

that these reactions were rare but deadly serious. Within a week I would be

laying there with people hovering all around me...Iv's, EKGs, Oxygen...the whole

works....and I thought I was going to sufficate right there. Scary stuff that I

had really not even given a second thought, until it happend to me.

Bottom line (in my humble opinion) Remicade helped, but do not ever

underestimate the power of any of the major injectibles. They can heal, but

they can kill too.

Don't even get me started on the Staph infection and blood poisoning I got on

Kineret!

Stay Healthy

wrote:

It appears the chemo I’m currently on is not taking my joint pain enough and

I’m in hope the next drug up would be Inflximab.

Can people give me their experiences of it and let me know how it effected

your joint pain. Thanks, Steve.

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[Guest guest]

Steve...

I'm not sure about it being the best treatment b/c in the 20 yrs I've dealt

with this disease, I've had various tretments that work for a while, then

something else needs to be added. This last flare was the case, since MTX &

Pred always seemed to work before, but weren't enough on their own this go

around. As far as the pain, yes it helps, simply b/c it helps to control the

disease itself. I was able to get off pain meds, but as I said earlier, I am

getting worse again and that may change as well.

Ultimately, it's up to you & your doc. I can tell you that most insurance

companies won't cover it until your doc has shown that pred & MTX didn't help

alone. Make sure of this, as my doctor charges over $5,000 for each treatment

(thank God I have Medicare and he accepts an assignment with them, or I couldn't

do it!) At first, I got a treatment, then again two weeks later, then 4 weeks,

then six, back to 4 since it seemed I needed them more often, then back to six

and eventually to every 8 weeks. This is the normal average for most people who

take it.

Good luck!

Gail

wrote:

Hi Gail,

I hear it's the best treatment currently available for Stills would you

agree? Also, how often do you have it and does it help with pain

significantly?

Steve

_____

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of Gail

Sent: 15 May 2006 15:23

To: Stillsdisease

Subject: Re: Who's on or been on Remicade/Infliximab?

I have been taking Remicade infusions for over a year now. It took about

three treatments to feel a difference, but I did get better. Recently,

though, I have been flaring more and am thinking I either need them more

frequently or even my dosed raised. My next treatment is this week on Wed.

My first infusion didn't go well, I had a reaction and my BP dropped.

Since then, they give me a steroid shot 30 minutes before my infusion to

counteract that and it hasn't happened since. Overall, I'd have to say,

other than a headache that lasts for a couple days, I haven't had any

problems. But they do recommend that you continue the MTX while on

Remicade, as it makes the Remicade work better.

Hope that helps!

Gail

wrote:

It appears the chemo I'm currently on is not taking my joint pain enough

and

I'm in hope the next drug up would be Inflximab.

Can people give me their experiences of it and let me know how it effected

your joint pain. Thanks, Steve.

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[Guest guest]

Hi, I live in the UK and we have NHS (National Health Service).

I was on Pred+MTX about 3 years ago but it didn’t work, added Sulphasalazine

and it didn’t make much difference. So went off MTX and onto

Cyclophosphamide. Now I’m having joint pains which pain killers I have

prescribed aren’t working for. Neither does Indomethacin.

_____

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of Gail

Sent: 15 May 2006 15:51

To: Stillsdisease

Subject: RE: Who's on or been on Remicade/Infliximab?

Steve...

I'm not sure about it being the best treatment b/c in the 20 yrs I've

dealt with this disease, I've had various tretments that work for a while,

then something else needs to be added. This last flare was the case, since

MTX & Pred always seemed to work before, but weren't enough on their own

this go around. As far as the pain, yes it helps, simply b/c it helps to

control the disease itself. I was able to get off pain meds, but as I said

earlier, I am getting worse again and that may change as well.

Ultimately, it's up to you & your doc. I can tell you that most insurance

companies won't cover it until your doc has shown that pred & MTX didn't

help alone. Make sure of this, as my doctor charges over $5,000 for each

treatment (thank God I have Medicare and he accepts an assignment with them,

or I couldn't do it!) At first, I got a treatment, then again two weeks

later, then 4 weeks, then six, back to 4 since it seemed I needed them more

often, then back to six and eventually to every 8 weeks. This is the normal

average for most people who take it.

Good luck!

Gail

wrote:

Hi Gail,

I hear it's the best treatment currently available for Stills would you

agree? Also, how often do you have it and does it help with pain

significantly?

Steve

_____

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of Gail

Sent: 15 May 2006 15:23

To: Stillsdisease

Subject: Re: Who's on or been on Remicade/Infliximab?

I have been taking Remicade infusions for over a year now. It took about

three treatments to feel a difference, but I did get better. Recently,

though, I have been flaring more and am thinking I either need them more

frequently or even my dosed raised. My next treatment is this week on Wed.

My first infusion didn't go well, I had a reaction and my BP dropped.

Since then, they give me a steroid shot 30 minutes before my infusion to

counteract that and it hasn't happened since. Overall, I'd have to say,

other than a headache that lasts for a couple days, I haven't had any

problems. But they do recommend that you continue the MTX while on

Remicade, as it makes the Remicade work better.

Hope that helps!

Gail

wrote:

It appears the chemo I'm currently on is not taking my joint pain enough

and

I'm in hope the next drug up would be Inflximab.

Can people give me their experiences of it and let me know how it effected

your joint pain. Thanks, Steve.

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[Guest guest]

:

I was on Remicade a few years back . It did not work for me to many

side effects. After the last treatment I had I ended up in the hospital

for over a week trying to get my blood pressure down and stable . so for

me it did not wok at all and this was after about 12 treatments . after

every two about I ended up in the hospital . so for some it works and

others it dose not . you know your body so if you do it listen to what

it tells you and if you feel any of the side effects speak up to your

doc right away do not put them off. I know I was one of the few things

like this happened to but ya just never know so good luck with it and I

wish you the best

Hugs all

Marty

Who's on or been on Remicade/Infliximab?

It appears the chemo I'm currently on is not taking my joint pain enough

and

I'm in hope the next drug up would be Inflximab.

Can people give me their experiences of it and let me know how it

effected

your joint pain. Thanks, Steve.

[Guest guest]

Good luck. If you feel you are having a hard time breathing or if you

feel dizzy during the infusion make sure you tell a nurse. You can

have low blood pressure during the infusion.I was very allergic but

before the reaction I felt great. I didn't get a reaction for a few

weeks. Love Sharoon

> It appears the chemo I’m currently on is not taking my joint pain

> enough and

> I’m in hope the next drug up would be Inflximab.

>

>

>

> Can people give me their experiences of it and let me know how it

> effected

> your joint pain. Thanks, Steve.

>

>

>

>

>

>

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> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.1.392 / Virus Database: 268.5.6/338 - Release Date:

> 12/05/2006

>

>

>

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> No virus found in this outgoing message.

> Checked by AVG Free Edition.

> Version: 7.1.392 / Virus Database: 268.5.6/338 - Release Date:

> 12/05/2006

>

>

>

>

[Guest guest]

Steve I am currently on remicade have been for 2 years now. It took about 3

treatments for me to feel the difference. And worked well for me for a long

time. But for the past 5 treatments or so It has been working less and less for

me. Even with him highering my dose of it and moving my weeks closer. I take

800 ml's every 6 weeks. This past week I was put back on the steroids again.

(not happy about that!) Now I really do not know what my next step will be.

I have talked to him about rituxin,but he hasn't said he wants me to try it.

On Monday I will start PT.

The only side effects I have experienced are a REAL bad headache for about

24 hours after treatment and flu like feeling for about 3 days after treatment.

Hope this helps.

Carey