remicade

[Guest guest]

Hi! Remicade has not been yet approved for children, which most likely

would cause an insurance payment issue. Robbie's doctor said that

he would be willing to have him switch from Enbrel to Remicade because

he hates the Enbrel shots, Robbie's choice. Ultimately, the Remicade

would be given via an IV at the hospital every 8 weeks. The doctors

have indicated they would expect similar results from both, as they

work in the same manor. Jana

[Guest guest]

Hello Jackie,

My son r, also systemic JRA, tried Remicade in December. We have been

on Embrel since mid summer. Our doctors have been playing with medicine

trying to find the right combo. Our son was also in an intense flare which

lead us to Remicade. The insurance company did deny the treatment. We went

in December for the first dose then 2 weeks later for the 2nd. By putting

him on the Remicade we had to take him off the Enbrel. Because this was

such a new drug we tried a small dose first then larger one the 2nd time.

r got worse. I think the biggest reason is because we took him off

Enbrel. We only waited a week after the second dose then discontinued it.

I think they are still working out dosage and there is just not a lotof

research on it for kids. How old is your son? r just turned 3. Enbrel

has done wonders for a lot of children and although it is not enough for Ky

it still makes a huge difference. Also for quick fixes we have done an IV

pulse of solimednol(I am sure I am spelling this wrong) but it is a steroid

a we go as outpatient which takes about 2hrs. Currently he has been on this

since Nov. He usually feels better right away and it last about a week. I

am sorry I probably over whelmed you. We are just going threw this with

trail and error. However Enbrel is used more regularly so I would wonder

why that was not a first option.

Pamela

>From: jacevans@...

>Reply-

>

>Subject: Remicade

>Date: Tue, 13 Feb 2001 20:13:15 -0000

>

>Our son has systemic Jra he has been in a flare for the last

>4 weeks. He has had fevers every night up to 103to 104. Has

>had joint pain and no energy. He is on 60mg of pred. and mtx

>also naprosyn. We went to the Dr on Monday he wants to put

>him on Remicade HELP has anyone's child been on this. I don't

>know much about it we wondered if it work's well on children.

>I hate to see him start something else but if it works that

>would be great. Thank You!!!!!

> Jackie

>

_________________________________________________________________

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[Guest guest]

Hi Jackie,

I sure hope this new treatment works well for Jed. Hopefully it will put an end to this flare and lead to lots of improvement. I hope the side effects aren't too bad and that he's able to manage okay. Please keep us updated on your son's progress. He's one of the first I know of to use Remicade to treat JRA.

Aloha,

Georgina

Hello everyone well Jed did his first Remicade treatment on Monday it was a long day at the hospital. I feel so bad for him going through a new medicine but we really hope this will help. He was sick at his stomach for a few days and no energy at all. The dr said it could be up to a week to a month before we see any results. This flare has lasted over 5 weeks and he is only able to go a few hours in the morning to school.We go back in a two weeks for the next infusion. I hope it goesbetter next time. Jackie

[Guest guest]

there's also info at www.remicade.com

[Guest guest]

shelley,

i've just been told that i will be starting my remicade this coming

week.....it is an infusion, meaning it is an IV, you can check out the

site someone else just sent

nanc

Ewen wrote:

HI all...can anyone give me more detail on Remicade?

My doctor is

talking aobut possibly starting it in April. How often is

it given,

is it pill or injection? How difficult to get your insurance

to

cover it...side affects? Thanks..

, Monroe, MI

[Guest guest]

Jen,

You have a right to be nervous about both the experience and

effectiveness.

I've had 3 infusions so far w/next one scheduled for July 5.

I can't say I have had overwhelming satisfaction but I am somewhat

better. My hubby reminds me of how much I could not do prior.......I

understand that it takes some time for this to build up a level the same

as many of our other drug option.

Hope all goes well. The staff at the infusion center are very nice - I

wish you a good experience. Feel free to write back to me if you have

any specific questions.

Nanc

Jng127@... wrote:

> Hi All,

>

> It's been a while since I have posted but I have been lurking. I

> chatted

> with the other night and he suggested that I post. So here it

> goes,

> Tomorrow I go for my first infusion of Remicade. I am a little

> nervous, not

> about the procedure, about the effectiveness. I just pray that it

> works for

> me. I feel like it is my last hope for relieve. I have been in such

> a

> horrible flare for three weeks, more joints are affected, the fatigue

> is

> getting worse and I have been very irritable. I would love to hear

> from

> anyone about their experience with the drug. Thanks for listening.

>

> Jen from CT

>

>

>

[Guest guest]

" I am currently waiting for approval for Remicade. While I wait, can

anyone tell me what to expect? Instant relief? Do we still stay on

the mtx while on this also? Side effects? And why does it have to be

infused? Long term effects?

Thanks!

"

As with all meds, different people respond differently. I think most

rhumy's are continuing the MTX schedule while the patients are on the

infusions. My rhumy gave me the option of Remicade or Enbrel and I

opted to go with Enbrel for now (because it is frankly easier for me

to inject myself than having to go to the hospital to be IV infused),

but as I understand they are of the same class of drugs with the

Remicade being a stronger version. If I'm remembering this right,

these drugs work because they inhibit the production of TNF (tumor

necrosis factor) in our bodies. This is a whole other approach than

the DMARDS, etc. where as Remicade/Enbrel don't suppress our immune

systems. These drugs have to be delivered by IV or injection because

they are a protein and they can't make them in a pill form (yet--

crosses fingers).

I've only been on the Enbrel for a month, but I've noticed a marked

improvement. Not so much in my swelled joints, but in my energy

level and the pain I have. Within the last week or so, I've cut back

on my Darvocet to 2 a day where I'd been taking 3-4 daily. I,

unfortunately, didn't tolerate MTX, so I've been on Azulfidine,

Feldene, Imuran combo. My rhumy gave me the go-ahead to cut back on

the Azulfidine for now and in about 6 weeks I'll start cutting back

on the Imuran. I'm also gonna start playing with the Feldene to see

if/when I need it. Hopefully with this new treatment, I'll soon be

free of the many bottles of pills in my bathroom and will only be

injecting myself 2x weekly.

I hope you get approved quickly and can start treatment soon. This

is really the first treatment I've been excited about just by seeing

the success stories. Much luck to you...

in Indiana

[Guest guest]

I started on Remicade in January of this year and can honestly tell you I felt

amazingly better the very next day. Yes, I am still on my methyltrexate but the

Rheumy wants to slowly bring me off of it. In terms of side effects, I haven't

had any to speak of. On the day of

the infusion I often have a headache in the afternoon but its nothing that stops

me from heading back to work (I have my infusions at 8:30 a.m. every eight

weeks). During the infusion they take your temperature, blood pressure and

pulse every 30 minutes (it takes 2-2 1/2

hours for the infusion). I often go up a few points in terms of fever but I

also start very low... normal for me is 96.5. Usually I bring a movie to watch

during the infusion. Last time I was extra tired so I cat napped. I still have

pain in my ankles and right knee when I

do a lot (yard work, house work, lots of walking) but ... I'm walking without a

cain and I'm not crawling up stairs... so I'll take it.

Incidentally, I was diagnosed last summer, had an incredibally painful fall and

Christmas and, after Remicade, am " sorta kinda normal " as my seven-year-old

says. Good luck.

thomason@... wrote:

> I am currently waiting for approval for Remicade. While I wait, can

> anyone tell me what to expect? Instant relief? Do we still stay on

> the mtx while on this also? Side effects? And why does it have to be

> infused? Long term effects?

> Thanks!

>

>

>

[Guest guest]

Hi Sharon,

Just a reminder ... don't forget that you can use our group's search

feature to browse through the JRA List archives of posted messages.

First, go to our group's main site

On the left, you'll see a link for " Messages. " That will take you to

/messages

If you type in " infliximab " (without the quotation marks) and click the

button that says " Search Archive " it will bring up lots of messages

about Remicade ... that have already been posted. Mostly research and

news articles, using the less familiar name. Alternately, you can type

in Remicade. Everyone subscribed to the JRA List has access to this

feature. There's lots of good info there.

Hope this helps,

Georgina

4nanny@... wrote:

>

> I'm still looking for info and tips about Remicade, so if any one has

> anything please send it my way. Thanks, Sharon Beech

[Guest guest]

Hi Pam,

I can definitely relate. In the 6+ years since my son was first

diagnosed, we've never gotten to the point of taking away any meds. It

seemed a gradual process of adding more to the combination, or

increasing the dosages, when the previous levels weren't able to control

the JRA. The only thing we've decreased (or tried to decrease) is the

daily prednisone. I don't think we'd have been able to reduce as much as

we have this time around, had we not raised the dose of

hydroxychloroquine (Plaquinel). We've never reduced at such a fast rate

as you've mentioned, though. My son's been very sensitive. He also

hasn't been having it by IV. Other than that, only his iron supplements

have been dropped, then re-started, then dropped again, according to how

the monthly labs look.

I wish I could give you some more insight about Remicade. We've never

tried it. Others who have will hopefully share their experiences. My son

currently takes Prednisone, Indomethacin, Plaquinel,

Methotrexate, Folic Acid, Cytotec, Miacalcin, and calcium. This last

reduction of his prednisone is working out okay but he is definitely

experiencing some side effects. I keep hoping that it's only temporary

but still, it saddens me to see how even after being treated for so

long, just a slight difference in the meds can have such drastic affects

on the way he feels.

All the best,

Georgina

pamelabrockett@... wrote:

>

> le (Systemic JRA, 1 year diagnosed and treated) is on 25 mg

> Methotrexate, 200 mg Imuran, 10 mg Prednisone, Plaquenal, and Indomethacin.

> She was getting worse in May and June, even with these treatments. The

> doctor opted for 1000 mg Solu-medrol and 40 mg Methotrexate IV treatment once

> a week. It is greatly improving her pain and energy, but the labs aren't

> changing. She is decreasing the Prednisone by 1 mg a week to 5 mg.

>

> He doesn't take any drugs away, he just keep adding. He wants to start her

> on Remicade in a couple of weeks and maybe decrease the Solu-medrol over

> time. I'm looking for comments and concerns on this treatment. I've read

> stuff on it, but haven't got any personal experiences with anyone.

>

> Pam Brockett

[Guest guest]

Hi Sharon,

Very glad to hear that had a good day I hope his sore throat

was just a minor, passing thing. Wishing him well,

Georgina

4nanny@... wrote:

>

> Pam,

> My son just took his first treatment of Remicade last

> Wednesday. He tolerated the infusion well and received solu-medrol

> with it. This was our first treatment so I don't have alot of info

> about it. I don't know if this is coincidence or not but the little

> booger is so full of energy today it is unbelievable, so maybe--just

> maybe, he feels better and it is due to the Remicade. The only

> thing, as far as complaints go, is he complained a little while ago

> of a sore throat. I'll have to keep an extra eye on this because I

> do worry about the chance of increased infections. You may e-mail me

> directly if you'd like and I will try to answer any questions you may

> have.

>

> In my prayers,

> Sharon

[Guest guest]

Pam,

My son just took his first treatment of Remicade last

Wednesday. He tolerated the infusion well and received solu-medrol

with it. This was our first treatment so I don't have alot of info

about it. I don't know if this is coincidence or not but the little

booger is so full of energy today it is unbelievable, so maybe--just

maybe, he feels better and it is due to the Remicade. The only

thing, as far as complaints go, is he complained a little while ago

of a sore throat. I'll have to keep an extra eye on this because I

do worry about the chance of increased infections. You may e-mail me

directly if you'd like and I will try to answer any questions you may

have.

In my prayers,

Sharon

> le (Systemic JRA, 1 year diagnosed and treated) is on 25 mg

> Methotrexate, 200 mg Imuran, 10 mg Prednisone, Plaquenal, and

Indomethacin.

> She was getting worse in May and June, even with these treatments.

The

> doctor opted for 1000 mg Solu-medrol and 40 mg Methotrexate IV

treatment once

> a week. It is greatly improving her pain and energy, but the labs

aren't

> changing. She is decreasing the Prednisone by 1 mg a week to 5 mg.

>

> He doesn't take any drugs away, he just keep adding. He wants to

start her

> on Remicade in a couple of weeks and maybe decrease the Solu-medrol

over

> time. I'm looking for comments and concerns on this treatment.

I've read

> stuff on it, but haven't got any personal experiences with anyone.

>

> Pam Brockett

[Guest guest]

I have just received my third injection last Wednesday. Along with

being pain free and taken off by celebrex I have no more psoriasis on

my head or elbows and the psoriasis on my back has been reduced to

pink patches. No more flaking and scaling and the redness is just

about gone. What a relief not to have my family members contstantly

brushing my shoulder to get rid fo the the flaking. I have not

noticed any side effects as of this point.

> I just received my second infusion of Remicade Monday.Other than

> being lightheaded and fatigued for 2 days, everything is great. I

> noticed a huge difference in my ankles after the first infusion. I

am

> able to get range of motion I haven't had since December. What a

> relief. The reason I'm writing is because the nurses were talking

> while I was receiving my IV and I asked what the difference was

> between Remicade and Enbrel and they said that research shows that

> patients receiving Remicade actually had new bone growth. The

> researchers took before and after X-rays and on patients receiving

> Remicade, there was new bone growth. In the information I read it

> also said that some have their psoriasis cleared up while using

> Remicade. Anyone else hear of this or experience this? Hope today

is

> a pain free day.

>

[Guest guest]

Thanks for your comments on the Remicade. I wanted to cry...I am tired of

changing meds. My rheumatologist has mentioned the Remicade if we don't get

anywhere on this combo I am on now (Enbrel and Arava). As I mentioned in

another post, I was taken off the Arava for two weeks to see if we can get my

white count to go up, but during that time, I am on the Enbrel three times a

week. I am running out of placing to poke myself! I am feeling so run down

this week and I don't know if it is because of the extra Enbrel or my blood

levels or what. It is very frustrating.

Thanks again,

D in MN

[Guest guest]

In a message dated 8/10/01 1:10:55 PM Central Daylight Time, sdcreate@...

writes:

> I wanted to cry...I am tired of

>

Go ahead and cry, that usually releases some stress (at least for women) but

also be glad your doc is willing to try different avenues. I wish you well

and hope that you get relief soon.

Chicagoland Sharon

[Guest guest]

Hi,

My son, , 5 years systemic may soon be given Remicade, as our

consultants are finding it difficult to get his symptoms under control. He

is at present on MTX 22and half by injection weekly. 15mg prednisolone daily,

400mg plaquenil daily, plus Tramadol and Lustral. He is just out of hospital

after solu medrol IV's - within 3 days his knees were back up and had to have

them both drained and injected with steroids. Although Remicade is very

expensive here in the UK, and our Health Authority wont pay for it, his

consultant is trying to make him a special case and they have hinted he may

be on it by December.

Has anyone else had much experience with this drug? How is it given?, and

has anyone had any success with it?

Cheers

Keep well

Sally

[Guest guest]

Sally, my daughter was on Remicade for 5 months. It seemed to be the cure-all med. But when we went in August, she had a very bad reaction to it. The doctor says that is why they are reluctant to give it to kids because of the reactions. It is given by IV, by the way, which was not a whole lot of fun. I still don't understand why she was able to take it for so long and then have a reaction and the doc didn't seem to have any concrete answer. I would discuss this with your doc alot. I know that they gave her Benadryl (sp?) before which was supposed to prevent reactions, so I still don't know what or why it happened. Good luck, and don't panic but I just wanted to you be aware of what could happen.

Pat & (1 year Systemic)

[Guest guest]

In a message dated 03/08/2002 12:39:59 AM Eastern Standard Time,

wreid2@... writes:

> I am about to have my first Remicade infusion

Hi Bill - I have no experience with Remicade, but I was wondering if you had

tried Enbrel and if it worked. If you haven't tried it, is there a reason

you went to Remicade instead?

[Guest guest]

Hi ,

Thank you for answering my message. I am trying Remicade before trying Enbrel

because my arthritis doctor told me that Enbrel involved self injection,

while Remicade involved a supervised infusion at a hospital location. Given

that choice, I

preferred to receive Remicade with an IV, rather than give myself Enbrel. I

shall tell you about my encounter next week.

Sincerely,

Bill in DC

[Guest guest]

In a message dated 03/10/2002 5:50:55 AM Eastern Standard Time,

wreid2@... writes:

> Enbrel involved self injection,

> while Remicade involved a supervised infusion at a hospital location

Bill - I have lousy veins so that sort of ruled out Remicade for me unless I

really get desparate. I guarantee you that once you give yourself an

injection 3 or 4 times, you really will start to not even feel it if you have

to go to the Enbrel.

Good luck,

[Guest guest]

Hi ,

My Remicade infusion went well today. My next one is in two weeks. Thanks for

your

advice.

Sincerely,

Bill in DC

[Guest guest]

Hi Bill;

my name is Cheryl I am also 58 my PA is not as serious as yours I have

had treatment since 1991.P and PA for some time before that.I have Pa

in hands feet neck hip. On the 1 to 10 scale I am only 4 lucky me. I

went through the usual treatments of anti-inflamitories placqunill

prednsione now I use a combo of MTX pred.celebrex and I just started

the remicade treatments in January my 3rd treatment will be march

27th . at the time of my first treatment Iwas in a major flareup for

a year. My whole autoimmiune system was running wild every allergy I

had was maginified and I started to react to every cleaning product

under the sun. Anyway the first day after the treatment I could feel

relief. My Rhumy plans to increase me to 3 vials on my 3rd treatment

because it seems to have " worn off " by the 5th or 6th week just a

little. Your weight determines how much they must use and I am NOT

tiny. I chose Remicade because it is available and don't worry about

side effects if it works. I have alwys been treated aggressively and

have minor degeneration in my hands and feet. My brather has this

disease and would not take the meds because of the side effects. He

needs 3 knuckles replaced and horrible pain in his neck and shoulders

and hands for the past 10 years. Yes I have experienced many side

effects on the other meds but notheing on the Remicade so far. I

have a wonderful Remicade nurse that hovers over me through the whole

treatment. She give me tylnol and benadryl before each treatment and

a VERY slow drip to avoid side effects I think thats the secret to

avoiding the reported problems in treatment sessions of hives, etc.

Hope this helps

Peace and Health

Cheryl

Bridgewater Massachusetts

Bridgewater Massachusetts

---

In @y..., wreid2@a... wrote:

> Hi PA Members,

>

> I am about to have my first Remicade infusion on Monday, March 11,

2002. I

> have had

> PA since al least 1994. I had both double hip & double knee

replacement

> operations

> during the summer of 1998. Now, PA is spreading to my shoulders.

Does anyone

> have any advice for me? I am a 58 year old bachelor, who retired in

1999.

>

> Sincerely,

>

> Bill in Washington, DC

>

>

>

[Guest guest]

Hi Cheryl,

I received my first Remicade treatment on March 11. Since then I have felt

much

better with an increased range of motion in my shoulders, and less stiffness

in my

joints. My next treatment is scheduled for March 25. It is good to hear that

you are

happy with your Remicade treatments. I hope you have continued success with

this

medical treatment. I decided to take Remicade in order to no longer need to

take

prednisone, which has induced in me mild cases of diabetes and osteoporosis.

So,

best wishes to you and your brother.

Sincerely,

Bill

[Guest guest]

Abbie has now completed her first round of Remicade. It went very well. I asked her how it felt to have $5,000 drip into her hand, and she said it was weird, but just made her even more special. lol We are both pooped; Abbie from sitting for so long, and me from driving 6 hours. But it's funny. I feel so hopeful; much more so than I have felt in a long time. And I was so stressed over this, because I have always looked at these drugs as the last step.

Now we just need to keep her well for the next six weeks. That's almost an impossible task. She is always getting colds and sinus infections lately. Maybe if the weather would settle down so would she. We got 4 inches of snow in 2 hours last night. Great big soft beautiful flakes. Curtis was thrilled. He got to use the snow blower for the first time this year. He's always been gone before.

Christy (Abbie 12, systemic)

[Guest guest]

Christy..good for you and Abbie..I hope she does well on Remicade as Tabitha

has been doing. When Tabs sinus gets acting up and her remicade is due..i

call the rheumy and he prescribes a med called Claritin or Claritin D which

is a decongestant.

karen(tab17..poly)

From: gazelle34@...

Reply-

Subject: Re: Remicade

Date: Tue, 19 Mar 2002 20:13:20 EST

Abbie has now completed her first round of Remicade. It went very well. I

asked her how it felt to have $5,000 drip into her hand, and she said it was

weird, but just made her even more special. lol We are both pooped; Abbie

from sitting for so long, and me from driving 6 hours. But it's funny. I

feel

so hopeful; much more so than I have felt in a long time. And I was so

stressed over this, because I have always looked at these drugs as the last

step.

Now we just need to keep her well for the next six weeks. That's almost an

impossible task. She is always getting colds and sinus infections lately.

Maybe if the weather would settle down so would she. We got 4 inches of snow

in 2 hours last night. Great big soft beautiful flakes. Curtis was thrilled.

He got to use the snow blower for the first time this year. He's always been

gone before.

Christy (Abbie 12, systemic)

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