remicade

March 21, 2002

Christy,

I am happy to hear everything went fine with the first dose. It gives me hope all will go well for Buzz Wed. I hope everything continues to go well and Abbie can stay well till next time. I know how hard it is to keep Buzz well.

Amy

Re: Remicade

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)

March 22, 2002

Amy,

Sorry to hear about the cancelled appt, as well as your younger sons problems. Hope everything turns out okay for him.

Christy

March 24, 2002

Hi Christy,

Wow. I'm so happy for you guys, that you were able to get the infusion done. And that there were no unexpected problems. That sure is a LONG drive though. Maybe next time you can get a good book on tape, to carry with you. If the story's good enough, it might help make the trip go by a bit faster. I feel good about this, too. Maybe this will be the start of more good things to come : ) I've just about forgotten how unpredictable the weather can be sometimes. Ours gets boring sometimes. When you watch the weather report on the news, nine times out of 10 it says it that we can expect clear, sunny, skies and continuing warm weather. They do spice it up a little by talking about the heights of the waves on various sides of the islands ... for all the surfers.

Aloha,

Georgina

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)

May 27, 2002

Dear ,

It is nice to hear from you again. I received my third Remicade treatment on

April 22,

and these treatments have helped me very much. They have reduced the

psoriasis on my back, reduced the inflammation and stiffness in my right

shoulder, and they

have reduced the inflammation in my lungs. So I highly recommend Remicade. I

hope you will be able to soon use it. Then, let us know how effective it is

for you.

Sincerely,

Bill in DC

June 9, 2002

Dear Connie,

Your insurance is not authorizing a doctors request from a company you

pay money to? I would have the your States Attorney to look into this

company. Let the State have a hand in this one. For, it is not an

unreasonable request for you to have this treatment. We have representives

to do just that. It is between your Insurance company and the State if they

are denying you treatment. The treatment was authorized by the FDA so now it

is up to the State you live in to demand an insurance company to give you the

right for treatment. Don't spend YOUR MONEY to fight THEM. HIRE YOUR STATES

ATTORNEY TO. In fact do it in writing.

You will get a major response. Either they will drop you or they will do

what is reasonable. Encourage others who pay this insurance to do likewise.

Why do we wait years to get what we need? FDA is slow enough. Now, big

business Insurance's refusing to allow you to have it only means they HOPE

YOU GO AWAY and not keep the

insanity of dialogue to continue. They love for you to get to your wits end.

Therefore, they don't have to pay out what they are paid to do. I had an

insurance company who had turned me down, each state has a CHIPS program for

those who are uninsurable.

Yes, an Insurance company by law has to offer you insurance and when they

want you off the insurance then they will offer you an unrealistic amount for

you to pay. At that time you should defiantly bring this to the attention to

your States Attorney General. I messed up by going on to Chips, and may have

had a case for the state to take notice of what Insurance Companies do to

cause you to become uninsurable. Instead at the time I went straight to the

Chips program. But, when in this situation we are not thinking straight,

only that we are ill. This is what insurance's and our own government does

to avoid paying you what it owes you.

Like, being declared as disabled OUR OWN GOVERNMENT HAS made people wait for

over 2 years to get it. NEVER --> re apply........ ALWAYS->APPEAL. Hoping

you die before you go to court. Sorry for the pun...... but it is ture.

When you deal with the disability for Social Security, and make sure you file

for it within 2 years of your last working day at a job. Otherwise you are

in a pickle about your quarters you have accrued in Social Security. Accured

means:

1 : to come into existence as a legally enforceable claim

2 a : to come about as a natural growth, increase, or advantage <the wisdom

that accrues with age> b : to come as a direct result of some state or action

3 : to accumulate or be added periodically <interest accrues on a daily basis>

transitive senses

: to accumulate or have due after a period of time <accrue vacation time>

- acÂ·cruÂ·able /-'krÃ¼- & -b & l/ adjective

- acÂ·crueÂ·ment /-'krÃ¼-m & nt/ noun

This must be done to get SSID instead of SSI...... the difference is amount

of money you will get from the disability to live on each month.

We have laws but sometimes we don't know what it means. Ignorance of the law

is not an excuse for disobeying it. But, in our own ignorance of the law we

are unaware of the ramifications of the good we can do within the law. In

other words OUR RIGHTS.

In the encurrment of SS disibility use an attorney who will take 25% and you

get 75% of what is to be paid to you in brining it to court.

Don't be afraid of going to court with the Federal Judge is to govern.

He is on your side and the evidence must be looked at.

Or you can gather all of your information and ask for an court judgement as

soon as possiable.....not paying out 25% to an attorney... you are more

likely to get it if a doctor says you are disabled. It all comes down to

this one fact YOU are RESPONSIBLE FOR YOUR OWN FREEDOMS!!!! If you want

something you must also FIGHT FOR IT. With or without an attorney. I do

believe that a doctor would stand beside you in writing if only we stood up

for OURSELVES. I think I made all of the mistakes I could have possiably

make. So, now I am a disability advocate.

To loose ones ability to WORK is a huge burden and for most of us a

disgrace (Shameful). We hate confrontation, because we feel like it does not

belong to us. OWN IT>>>>>THEN ACT ON IT!!!!!! We all usually only REACT to

a sitmulus, like being turned down. We feel helpless. Empower yourselves

and do what is within the law for you to do. Keep excellent records and ask

your doctors office to send you your records, to you. If he wants to be

paided he will do what is right.

Use that statement........if you want to be paid then let me fight for my

rights; otherwise you will not be paid as well. THIS IS WHY WE ARE NOT

ALONE........

BRIE

October 8, 2002

I, too, am on Remicade--two treatments so far. The first brought dramatic,

immediate improvement and the second brought continued relief, just not as

dramatic. I have had no side effects and my third treatment is scheduled

10/17. When I made my return visit to rheumy last week, we decided to

reintroduce arava--I took it for 1-1/2 years with outstanding results until

in April of this year swelling & pain in my knees and ankles returned. He

then introduced methotrexate (had taken for 5-1/2 years prior to beginning

arava) which produced liver enzyme elevation to extent I will not be taking

methotrexate again.

My rheumy is out of town this week and I have a question Ron or others can

answer from your experience. I didn't realize it until yesterday, but I was

not given the " loading dose " arava packet--only the prescription for 20

mg./day. Did those of you on Remicade take the loading dose prior to

beginning prescription? Also, I developed sinus pain (like when I have a

sinus infection) 2nd day after beginning arava. Is there a possible

connection? Or just coincidence? Thanks for any input.

in VA

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

(Moderators note)

Hi ,

Since you included me specifically in your question, I'll just add my reply here

if you don't mind.

When I started Arava, my rheumy prescribed around 40 pills (I forget the exact

number) and they came in a bottle from the pharmacy - not in a packet. She

instructed me to take 100 mg (five 20 mg pills) the first day, then 20 mg each

day for four days, then another 100 mg dose followed by four more days of 20

mg's, then the final 100 mg loading dose, and then to resume 20 mg daily

thereafter. She said the reason for spreading out the loading dose over about

two weeks was that if I had a bad reaction to it, the medication could be

stopped before too much of it had gotten into my system. Normally the loading

dose is taken on three consecutive days (100 mg each of the three days) at the

beginning of your treatment with Arava (See

http://www.rxlist.com/cgi/generic3/leflunomide_ids.htm ). My rheumy said that

without the loading dose, it would take from 4 to 6 months for enough Arava to

build up in my blood to do any good. I assume you could take the loading dose at

any time, though I would assume that if you've already been on it for awhile,

the loading dose should probably be reduced accordingly.

HOWEVER in your case, if I were you I would stop taking Arava altogether

immediately, and wait until your rheumy returns before resuming it. I had no

adverse reactions to Arava whatever, so if you had any bad reaction at all (eg;

your sinus problem) I think the best course of action is to stop the medication

until you can consult your doctor. You can always resume it later.

Arava takes a long time to build up in your bloodstream, and it also takes a

long time to be eliminated from your bloodstream, so it would be unwise to

continue taking it if it's potentially causing you problems. There is a drug

elimination procedure that can be used for Arava if necessary, but why chance it

if your rheumy will be returning in only a week or so? Better safe than sorry.

-- Ron

October 14, 2002

Hi -

I can relate to what you are saying, I too have PA but primarily in my fingers &

a few toes. My toes don't give me a lot of problems, however, in my hands I

have it so severely that my knuckles are bent, fused and crooked and becoming

more and more ugly and deformed. I am also taking remicade and arava and just

had my 3rd infusion on the 3rd of October. I really haven't noticed any

improvement since I began the remicade because I still am having soreness in my

fingers. I asked my doctor what I should be looking for and when should I start

to see some improvement from the infusions. She said most people begin to see

improvement after the 2nd infusion and that would be less pain & no new flare

ups. Well, actually I am in very little pain, I just have sore joints and

frustration when I cant do certain things I used to do. My onset of Psoriasis

came when I was about 13 but very mild, just mostly behind the ears on my scalp

and on my knees and elbows. When I was 23 (I'm 31 now) is when my arthritis

appeared out of the blue and its been all downhill fast since then. I didn't

have any side effects from the remicade except for a slight sore throat and a

slight cough and a nice bruise from the IV. My doctor said if we don't see

anything positive after the 5th infusion, we'll try the enbrel and hopefully by

that time it will be more available. The only thing about that is you have to

inject yourself and I don't like needles to begin with but I will try anything

if it will work. As far as the infections, I had a little cold about a week ago

and was concerned that my immune system may not be able to fight off the cold,

but it did with no problems. Good luck with your next infusion, I hope it works

for you.

----Kathleen

[ ] Remicade

Hello all,

....

I'm wondering if anyone else out there is being treated with Remicade

and if so what are the complications and results. I do have concerns

with the risk of infections and complications from that but have been

in enough pain to consider it a viable trade off. It does scare me

though...

October 16, 2002

i have been on remicaide for almost a year now..and i LOVE it..it has done

wonders for my p and my pa.--i noticed joint improvement within a week and p

improvement within 2-3 weeks. i have had just about zero side effects-some

headaches but skin clearing sure out weigh's the headaches. i had small

relapse last month, so i also started mtx again..only 10 mg per week.and it

knocked it back down

thank, jim ruiz

December 8, 2002

Hi,

Im Izzie, I was happy to read about Remicade. I have been trying to make the

decision myself for some time now and I am afraid to try it. I will check out

the URL. I know you were writing to e but the info helped me too!

Iz

----- In Response To -----

e,

Sorry that no real treatments seem to be helping with your

daughter I read where you mention remicade, Im on remicade treatments myself

have been since July I go in for my fifth tx in Jan. If you are looking for

once certain treatment that will help with your daughter's mobility and

function this coould be your answer but, let me warn you nothing including

this treatment may not be your ticket What I mean by that is we as parents

try so hard and want sooo desperatly for something anything to help our

children. I had previously in the past heard of this remicade and had no idea

what it was, this time last year I was unable to barely walk, I was soooo

fatigued and in severe,severe,severe pain excruitiating most of my waking

hours. And when I would sleep I never got sleep it was a very restless

painful sleep forget getting in and out of a bath i could barely do that

there was no way I was asking my hubby to help heck I even had difficulty

getting on the commode seat dang!!!!!!! here is a sight that maybe help to

you in regards to remicade Ive checked this site out myself once the rhuemy

doc said he was gonna have me on the drug. I went to this site;

https://www.remicare.com/gateway/index.jsp

this is one url that maybe able to help you in your decision about remicade

please dont think that this drug doesn't come without side effects which I

paided attention to I actually never had any side effects until my 3rd

treatment my rhuemy had upped my dose and the infusion nurse was not aware of

this and she called the doc who told her to go from 300mg to 500mg

well.......I had 1 hr left on my IV and she came at me with a horse needle

and I mean BIG and a smaller needle my first reaction was OH geeze she is

gonna shoot me with that LOL she didn't she put the remaining meds into the

IV bag and and I was on my way I was ok when I go home not the next morning

tho I was very ill and stayed that way ffor 10 days flu like symptoms this

remicade can give you this so take notes ok to let the rheumy know ok..while

I was trying to get over that I was severly fatigued and my rhuemy put me on

a meth pak it is usually done this way the remicade also has methodextrate

also in the IV they up the dose according to ones body wt. Some people have

reactions while getting the IV such as itching for this they say you can take

a benedryl prior to coming in or sometimes if it happens while you are there

they will give you one. BP and temps are taken upon arriving then every half

an hr I thinkin you can go in with your daughter I know the first

treatment I was scared to death but hey Im a pro now,before your doc does

agree to go ahead and do the TX there will be the TB test and a chest Xray.

In alot of the sites Ive been to about remicade there is a possibility of

developing TB this is also true for any other infections because the immune

system is so down. Don't wanna scare you but it its important to go in with a

open mind. And relize the things that could occur, my hubby says Ive gotten

10 yrs back from these treatments and it is so I can do things now I couldn't

last yr and yrs prior to this I know there is a new drug coming out in the

spring of 2003 that is suppose to surpass remicade I will have to look it up

it is given by shot. I hope this has helped some once you join the remicade

community they will send you this nice remicare booklet it has a place in the

back to write everything done your thoughts , everything. I have a 13 yr old

son whom is doing much better his poly is not actually bothering him which is

great!!!!!!!!!!but my hubby had come to terms with the fact that he may have

to go on remicade treatments as well I was a lil ify in that department I

actually didn't think remicade txs were given to teens. You learn something

everyday , take care:)

Bye,

Teena, (poly) 13

<HTML>

<FONT FACE=arial,helvetica><FONT SIZE=2 FAMILY= " SANSSERIF " FACE= " Arial "

LANG= " 0 " >e,

Sorry that no real treatments seem to be helping with your

daughter I read where you mention remicade, Im on remicade treatments myself

have been since July I go in for my fifth tx in Jan. If you are looking for once

certain treatment that will help with your daughter's mobility and function this

coould be your answer but, let me warn you nothing including this treatment may

not be your ticket What I mean by that is we as parents try so hard and want

sooo desperatly for something anything to help our children. I had previously in

the past heard of this remicade and had no idea what it was, this time last year

I was unable to barely walk, I was soooo fatigued and in severe,severe,severe

pain excruitiating most of my waking hours. And when I would sleep I never got

sleep it was a very restless painful sleep forget getting in and out of a bath i

could barely do that there was no way I was asking my hubby to help heck I even

had difficulty getting on the commode s!

eat dang!!!!!!! here is a sight that maybe help to you in regards to remicade

Ive checked this site out myself once the rhuemy doc said he was gonna have me

on the drug. I went to this site;

<U>https://www.remicare.com/gateway/index.jsp</U>

this is one url that maybe able to help you in your decision about remicade

please dont think that this drug doesn't come without side effects which I

paided attention to I actually never had any side effects until my 3rd

treatment my rhuemy had upped my dose and the infusion nurse was not aware of

this and she called the doc who told her to go from 300mg to 500mg well.......I

had 1 hr left on my IV and she came at me with a horse needle and I mean BIG and

a smaller needle my first reaction was OH geeze she is gonna shoot me with that

LOL she didn't she put the remaining meds into the IV bag and and I was on my

way I was ok when I go home not the next morning tho I was very ill and stayed

that way ffor 10 days flu like symptoms this remicade can give you this so take

notes ok to let the rheumy know ok..while I was trying to get over that I was

severly fatigued and my rhuemy put me on a meth pak it is usually done this way

the remicade also has methodextrate also in the IV t!

hey up the dose according to ones body wt. Some people have reactions while

getting the IV such as itching for this they say you can take a benedryl prior

to coming in or sometimes if it happens while you are there they will give you

one. BP and temps are taken upon arriving then every half an hr I thinkin you

can go in with your daughter I know the first treatment I was scared to

death but hey Im a pro now,before your doc does agree to go ahead and do the TX

there will be the TB test and a chest Xray. In alot of the sites Ive been to

about remicade there is a possibility of developing TB this is also true for any

other infections because the immune system is so down. Don't wanna scare you but

it its important to go in with a open mind. And relize the things that could

occur, my hubby says Ive gotten 10 yrs back from these treatments and it is so I

can do things now I couldn't last yr and yrs prior to this I know there is a new

drug coming out in the spring of 2003 t!

hat is suppose to surpass remicade I will have to look it up it is given by

shot. I hope this has helped some once you join the remicade community they will

send you this nice remicare booklet it has a place in the back to write

everything done your thoughts , everything. I have a 13 yr old son whom is doing

much better his poly is not actually bothering him which is great!!!!!!!!!!but

my hubby had come to terms with the fact that he may have to go on remicade

treatments as well I was a lil ify in that department I actually didn't think

remicade txs were given to teens. You learn something everyday , take care:)

Bye,

Teena, (poly) 13 </FONT>

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January 5, 2003

True Jean.

I am so jaded, I know, as I suffered the worst of side efftcs from a doc NOT

telling me what they were. I was on cytoxan 2 1/2 yrs..nowhave a very low

white count from a depressed bone marrow.. I was on mtx before that over 5yrs

and on pred 17yrs.

I am sorry I let it show

Love

Marge

January 5, 2003

In a message dated 1/5/03 4:59:29 PM, Elfmarge@... writes:

<< With all due repect,I think you picked the wrong place for this info.

Remicade disables the immune system..no matter how you look at it.

i know with all the threats out there..I need all the immunity I have!

>>

Marge,

I think when a person has no quality of life....in unable to sleep...is

unable to do the simplest tasks without extreme pain.. is unable to

function....and endures excruciating pain every day of their life..

Remicade sounds pretty good.

Pris

The first and only book devoted to potbellied pig behavior and training!

Discounted at http://valentinesperformingpigs.com/trainingbook.html

PayPal accepted.

January 6, 2003

Hi

With all due repect,I think you picked the wrong place for this info.

Remicade disables the immune system..no matter how you look at it.

i know with all the threats out there..I need all the immunity I have!

To me, there CAN BE NO improved version of this drug!

Love

Marge

> Biotech Company Says It Has Improved 2 Drugs

> By ANDREW POLLACK (NYT)

> Applied Molecular Evolution has developed what it says are improved

versions

> of Remicade for rheumatoid arthritis and Rituxan for non-Hodgkin's

lymphoma.

January 6, 2003

on 1/5/03 6:58 PM, elfmarge <Elfmarge@...>, at Elfmarge@..., wrote:

> Hi

> With all due repect,I think you picked the wrong place for this info.

> Remicade disables the immune system..no matter how you look at it.

> i know with all the threats out there..I need all the immunity I have!

>

> To me, there CAN BE NO improved version of this drug!

Marge, that's one way to look at it, but another way to look at it is that

it is always good to know what is being advocated to treat these diseases,

whether we chose to use that drug or not.

I was actually hoping Denis would repost that info, with the link to the

source. I have a young friend who was treated with Rituxan for a very

aggressive case of lymphoma this fall, the Rituxan probably saved his life.

I'd like to learn what the advancements with that drug are.

--

Jean

jpro2@...

>

>> Biotech Company Says It Has Improved 2 Drugs

>> By ANDREW POLLACK (NYT)

>> Applied Molecular Evolution has developed what it says are improved

> versions

>> of Remicade for rheumatoid arthritis and Rituxan for non-Hodgkin's

> lymphoma.

January 6, 2003

I know I am going to get jumped on here, but I believe Remicade is the med

that

my doctor said he refused to presscribe as they have had increased incidence

of developing Multiple Sclerosis on this. Has anyone else heard this???

Martha

January 6, 2003

l agree with you Pris. Sometimes we have to do what we have to do to get by

and if it means other drugs other than AP then so be it. Most patients

should work with their doctors. Ginger. Re: rheumatic Re: Remicade

>

> In a message dated 1/5/03 4:59:29 PM, Elfmarge@... writes:

>

> << With all due repect,I think you picked the wrong place for this info.

> Remicade disables the immune system..no matter how you look at it.

> i know with all the threats out there..I need all the immunity I have!

> >>

>

> Marge,

> I think when a person has no quality of life....in unable to sleep...is

> unable to do the simplest tasks without extreme pain.. is unable to

> function....and endures excruciating pain every day of their life..

> Remicade sounds pretty good.

> Pris

>

> The first and only book devoted to potbellied pig behavior and training!

> Discounted at http://valentinesperformingpigs.com/trainingbook.html

> PayPal accepted.

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

January 6, 2003

Hi Amy,

My son was also on Enbrel for about three months and it did very little for him, much to our disappointment. He switched to remicade and has been on that for almost ten months. It made a big difference and he is doing much better. ly, it was a relief to stop doing the shots and go to the once a month infusion, although that’s no picnic either. He still gets an injection of methotrexate. Our son gets remicade every four weeks, but that varies from person to person. He has experienced no side effects as far as I can tell. It is time consuming to sit there for the three hours and get the infusion. They watch the kids closely for infusion reactions. But once the iv is in, it’s just a matter of waiting. We saw a difference in our son a few weeks after his first dose. He has at times been able to get off of prednisone, although if he gets a virus it triggers a flare which needs prednisone. But the flares bring on less pain and stiffness then without the remicade. Ask about the dose. Our son is getting 12mg/kg which is a pretty high dose. I think most kids get 6 or 10mg/kg. I wish you luck. Take care. and Ezra (six year old systemic)

On 1/6/03 11:44 AM, " Fox " <foxkits3@...> wrote:

Hello all,

Alyssa has been on Enbrel for 4 months now and we are seeing no improvement. Her jaw has started to hurt now too.

We go today for her 3 month appt. at Children's here in Seattle ( for the enbrel study she's on). Her regular Rheumy wants to put her on Remicade. We had so hoped that we would be one of the ones that did well on the Enbrel. Depression for her has set in and we are heading into a flare. She turns 17 in a few days and feels like she's 100. We have had such a period of highness, guess the JRA wants to let us know its still around..... She is thinking of writing a book (my mom is a writer), she wants to call it " This is the face of Arthritis! " with a picture of kids on the cover. I suggested it be a collaborative effort and include all families that want to.

Anyway, if anyone who is doing remicade could let us know what to expect we would appreciate it.

Amy and Alyssa (16 3/4 poly)

January 7, 2003

From www.remicade.com

REMICADE is contraindicated in patients with moderate or severe (NYHA Class

III/IV) congestive heart failure (CHF). Also it should not be administered

to patients with CHF of any class at doses greater than 5 mg/kg. REMICADE

should be used with caution in patients with mild CHF and REMICADE must not

be continued in patients who develop new symptoms of CHF or worsening

symptoms of pre-existing CHF.

TUBERCULOSIS (FREQUENTLY DISSEMINATED OR EXTRAPULMONARY AT CLINICAL

PRESENTATION), INVASIVE FUNGAL INFECTIONS, AND OTHER OPPORTUNISTIC

INFECTIONS, HAVE BEEN OBSERVED IN PATIENTS RECEIVING REMICADE. SOME OF THESE

INFECTIONS HAVE BEEN FATAL. PATIENTS SHOULD BE EVALUATED FOR LATENT

TUBERCULOSIS INFECTION WITH A TUBERCULIN SKIN TEST.1 TREATMENT OF LATENT

TUBERCULOSIS INFECTION SHOULD BE INITIATED PRIOR TO THERAPY WITH REMICADE.

Many of the serious infections have occurred in patients on concomitant

immunosuppressive therapy that, in addition to their disease, could

predispose them to infections. Cases of sepsis, pneumocystosis,

histoplasmosis, and listeriosis have been reported. For patients who have

resided in regions where histoplasmosis is endemic, the benefits and risks

of REMICADE should be carefully considered before initiation of REMICADE

therapy.

Caution should be exercised when considering the use of REMICADE in patients

with a chronic infection or a history of recurrent infection. REMICADE

should not be given to patients with a clinically important, active

infection. Patients should be monitored for infection while on or after

treatment with REMICADE. New infections should be closely monitored. If a

patient develops a serious infection, REMICADE therapy should be

discontinued.

REMICADE should not be administered to patients with known hypersensitivity

to any murine proteins or other component of the product.

REMICADE has been associated with hypersensitivity reactions that differ in

their time of onset. Urticaria, dyspnea and hypotension have occurred in

association with REMICADE infusion as part of an acute infusion-related

symptom complex. Serious infusion reactions including anaphylaxis were

infrequent. Medications for the treatment of hypersensitivity reactions

(e.g., acetaminophen, antihistamines, corticosteroids and/or epinephrine)

should be available for immediate use in the event of a reaction.

REMICADE and other agents that inhibit TNF have been associated in rare

cases with optic neuritis, seizure and new onset or exacerbations of

clinical symptoms and/or radiographic evidence of demyelinating disorders,

including multiple sclerosis. Prescribers should exercise caution in

considering the use of REMICADE in patients with pre-existing or recent

onset of central nervous system demyelinating or seizure disorders.

rheumatic re: Remicade

> I know I am going to get jumped on here, but I believe Remicade is the

med

> that

> my doctor said he refused to presscribe as they have had increased

incidence

> of developing Multiple Sclerosis on this. Has anyone else heard this???

> Martha

>

January 7, 2003

Amy,

My daughter is only just getting ready to turn 11 so we have yet to deal with arthritis and the teenage years. We have, however, gone thru those years with 2 kids and have 2 more still in the teenage years so I know how challenging they can be for the kids without arthritis thrown in. Alyssa sounds like an amazing young lady and I hope she does write that book! Tell her to please include info about her signing choir~~ that must be quite fun as well as being beneficial for all. I'll buy the book when it's published.

I hope that if the switch to Remicade is made it will be that "magic" drug for Alyssa.

Liz

remicade

Hello all,

Alyssa has been on Enbrel for 4 months now and we are seeing no improvement. Her jaw has started to hurt now too.

We go today for her 3 month appt. at Children's here in Seattle ( for the enbrel study she's on). Her regular Rheumy wants to put her on Remicade. We had so hoped that we would be one of the ones that did well on the Enbrel. Depression for her has set in and we are heading into a flare. She turns 17 in a few days and feels like she's 100. We have had such a period of highness, guess the JRA wants to let us know its still around..... She is thinking of writing a book (my mom is a writer), she wants to call it "This is the face of Arthritis!" with a picture of kids on the cover. I suggested it be a collaborative effort and include all families that want to.

Anyway, if anyone who is doing remicade could let us know what to expect we would appreciate it.

Amy and Alyssa (16 3/4 poly)

January 7, 2003

Amy,

My daughter is only just getting ready to turn 11 so we have yet to deal with arthritis and the teenage years. We have, however, gone thru those years with 2 kids and have 2 more still in the teenage years so I know how challenging they can be for the kids without arthritis thrown in. Alyssa sounds like an amazing young lady and I hope she does write that book! Tell her to please include info about her signing choir~~ that must be quite fun as well as being beneficial for all. I'll buy the book when it's published.

I hope that if the switch to Remicade is made it will be that "magic" drug for Alyssa.

Liz

remicade

Hello all,

Alyssa has been on Enbrel for 4 months now and we are seeing no improvement. Her jaw has started to hurt now too.

We go today for her 3 month appt. at Children's here in Seattle ( for the enbrel study she's on). Her regular Rheumy wants to put her on Remicade. We had so hoped that we would be one of the ones that did well on the Enbrel. Depression for her has set in and we are heading into a flare. She turns 17 in a few days and feels like she's 100. We have had such a period of highness, guess the JRA wants to let us know its still around..... She is thinking of writing a book (my mom is a writer), she wants to call it "This is the face of Arthritis!" with a picture of kids on the cover. I suggested it be a collaborative effort and include all families that want to.

Anyway, if anyone who is doing remicade could let us know what to expect we would appreciate it.

Amy and Alyssa (16 3/4 poly)

January 28, 2003

Cristina, I have been on remicade since last May (2002). When I got the

infusions at first I would get a tiny tiny little headache between my eyes

during the infusion. That has subsided. The one that has not is the very

very slow wound healing. You can see scars of my infusion sites for

several months or longer. I went to the dentist and he wasn't too careful

when he injected my gums for a filling. That did not heal for 6 weeks or

more. A couple of times I have felt kind of flu-ish for a week or so

after getting an infusion and also very very tired.

Benefits-wise: almost immediately the pain I had in my wrists and fingers

subsided. The only pain I have now which really bothers me is my lower

back. The dr says swelling has gone way down in general.. I think it has

worked well for me-- I just need to watch those darn liver enzymes....

I kind of enjoy the infusion times--it is peaceful and quiet and the

nurses are nice... I just hate getting a potent drug..... But the

atmosphere makes it more tolerable. Last time, they had a heck of a time

starting the IV though. They had to try five different sites before they

could get a usable vein.. They were not sure why as they've had no trouble

before with me. I wonder if the sjogren's if getting worse and i'm

getting drier inside..... I wonder what would happen if i had to have

surgery and was NPO before it---how would they get a vein then!!! I was

almost afraid they were going to have to do a cut-down this last time!!!!!

She said no----we never do---but..... anyway

Hope this helps:)

> HI! Does anybody knows about side effects using remicade?,

and How are the benefits of the use of this medicine?

> Cristina

Liz

~~~

" I've learned that people will forget what you said, people will forget

what you did, but people will never forget how you made them feel. "

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

EMAIL: juliette@... **ICQ 49746198** MSN & AIM LizKP1952**

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

ADDult HOME PAGE: http://members.tripod.com/~LizK/addult.htm

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

February 11, 2003

It's kind of funny, really. I stopped participating in this forum

about four months ago because folks here seemed so stuck on

antibiotic therapy that they often criticize those of us who are not

helped by it. Just for fun, and a bit out of curiosity, I logged in

today and gues what I found - more of the same!

The fact is that antibiotic therapy does not work for everyone. I

would love to see statistics on it's efficacy for something like what

I have - Psoriatic Arthritis. In my case, it was 100% useless. I

tried it for almost a year while my arthritis kept getting worse and

worse. My family Dr. allowed me to try it and prescribed the

necessary treatment. After nine months he gave up and referred me to

a Rheumatologist who put me on Sulfazaladine and MTX. Within a

matter of three weeks I went from the wheelchair to walking around

the block every day. He kept me on MTX for a few months, then we

switched to Remicade because it is safer and more effective for me.

For me, MTX, Sulfazaladine, and yes, Remicade have all been

miracles. This is true for many others as well.

Let's not forget that any drug, including antibiotics, effect many

aspects of your metabolism - some of which are not at all

understood. Since each of us has a unique metabolism, it is safe to

say that each of us also has an ideal set of drugs that work best.

What works for you may do nothing for me. What is toxic for me may

not be for you.

Having said all this, I strongly advise all of you to stop offering

advice to people in this forum regarding what drugs are best for

them. I took your advice and it nearly cost me my mobility. I can

only imagine how many others you have misled by your unqualified

advice and are now unable to walk because of it.

Farewell,

Doug

> > Biotech Company Says It Has Improved 2 Drugs

> > By ANDREW POLLACK (NYT)

> > Applied Molecular Evolution has developed what it says are

improved

> versions

> > of Remicade for rheumatoid arthritis and Rituxan for non-

Hodgkin's

> lymphoma.

February 11, 2003

I've been on antibiotics - it will be two years this month. The first 18

months using the antibiotic protocol were brutal, but, I stuck with it

and now I have begun to go into remission from PA.

Clinically - I'm back teaching a step aerobic class, my range of motion

is nearly normal, I have an abundance of energy, I could go on and on.

The labs back up my clinical improvement. My CRP is zero, my RF titer

has recently dropped again to 640, my sed rate is a fraction of what it

used to be. In fact all but two of my labs are " normal " those two- the

sed and RF titer have both been inching toward the normal range since

last June.

Heck yah, I'm stuck on the Antibiotic therapy. It's given me my life

back. Thank you participants of Rheumatic org. for all the advice you

all have offered to me over the last two years! I am one of those who

have been helped by your qualified advice (the been there done that

school of medicine)

K

kronahp wrote:

>

> It's kind of funny, really. I stopped participating in this forum

> about four months ago because folks here seemed so stuck on

> antibiotic therapy that they often criticize those of us who are not

> helped by it. Just for fun, and a bit out of curiosity, I logged in

> today and gues what I found - more of the same!

>

> The fact is that antibiotic therapy does not work for everyone. I

> would love to see statistics on it's efficacy for something like what

> I have - Psoriatic Arthritis. In my case, it was 100% useless. I

> tried it for almost a year while my arthritis kept getting worse and

> worse. My family Dr. allowed me to try it and prescribed the

> necessary treatment. After nine months he gave up and referred me to

> a Rheumatologist who put me on Sulfazaladine and MTX. Within a

> matter of three weeks I went from the wheelchair to walking around

> the block every day. He kept me on MTX for a few months, then we

> switched to Remicade because it is safer and more effective for me.

>

> For me, MTX, Sulfazaladine, and yes, Remicade have all been

> miracles. This is true for many others as well.

>

> Let's not forget that any drug, including antibiotics, effect many

> aspects of your metabolism - some of which are not at all

> understood. Since each of us has a unique metabolism, it is safe to

> say that each of us also has an ideal set of drugs that work best.

> What works for you may do nothing for me. What is toxic for me may

> not be for you.

>

> Having said all this, I strongly advise all of you to stop offering

> advice to people in this forum regarding what drugs are best for

> them. I took your advice and it nearly cost me my mobility. I can

> only imagine how many others you have misled by your unqualified

> advice and are now unable to walk because of it.

>

> Farewell,

> Doug

>

> > > Biotech Company Says It Has Improved 2 Drugs

> > > By ANDREW POLLACK (NYT)

> > > Applied Molecular Evolution has developed what it says are

> improved

> > versions

> > > of Remicade for rheumatoid arthritis and Rituxan for non-

> Hodgkin's

> > lymphoma.

>

February 11, 2003

I'm with you ! If I would have given up at one year (when I still

felt horrible) I wouldn't be where I am today. It took me 22 months to

see any significant results for my RA but it is working and I'm getting

better. I have so much less pain, more energy and stamina then I've had

in years.

Doug, those meds you are now on work for a while but for most people

after a while you need more and more. And I don't think the side

effects are worth it. Just ask some people who are now suffering from

those side effects. Even if you need them for right now, I wouldn't

abandon the AP because you are just covering up your disease symptoms

and doing nothing to rid your body of the disease. How do you know it

is useless Doug, when you gave up on it? Not all of us get better the

first year. I sure didn't. But some wonderful people kept telling me

that it would get better and encouraging me to stick with it and I'm so

glad that I did. Remember, you usually feel a lot worse on this therapy

before you start getting better.

I don't think there are any studies done on AP with PA so I don't think

you will find any statistics. Our advice comes from our own experiences

and the collecitve experiences of the group. In the large majority of

cases AP does work.

There are a lot of factors that can keep AP from working such as: yeast,

allergies, hormones, more than one mycoplasma, another infection, etc.

That's why we all have to play detective to find out what is going on

in our bodies and combat it.

Another thing is having an experienced AP doctor who knows what to look

for to help you fine tune your therapy. Unexperienced doctors do not

know to do this and usually aren't even aware of the need for this.

I'm sorry you feel this way Doug, but if it weren't for the wonderful

grouop of people that kept me encouraged and gave me good advice, I

wouldn't be feeling as good as I do today. I'm very greatful for their

advice.

Jeanette

King wrote:

>I've been on antibiotics - it will be two years this month. The first 18

>months using the antibiotic protocol were brutal, but, I stuck with it

>and now I have begun to go into remission from PA.

>

>Clinically - I'm back teaching a step aerobic class, my range of motion

>is nearly normal, I have an abundance of energy, I could go on and on.

>The labs back up my clinical improvement. My CRP is zero, my RF titer

>has recently dropped again to 640, my sed rate is a fraction of what it

>used to be. In fact all but two of my labs are " normal " those two- the

>sed and RF titer have both been inching toward the normal range since

>last June.

>

> Heck yah, I'm stuck on the Antibiotic therapy. It's given me my life

>back. Thank you participants of Rheumatic org. for all the advice you

>all have offered to me over the last two years! I am one of those who

>have been helped by your qualified advice (the been there done that

>school of medicine)

> K

>

>kronahp wrote:

>

>>It's kind of funny, really. I stopped participating in this forum

>>about four months ago because folks here seemed so stuck on

>>antibiotic therapy that they often criticize those of us who are not

>>helped by it. Just for fun, and a bit out of curiosity, I logged in

>>today and gues what I found - more of the same!

>>

>>The fact is that antibiotic therapy does not work for everyone. I

>>would love to see statistics on it's efficacy for something like what

>>I have - Psoriatic Arthritis. In my case, it was 100% useless. I

>>tried it for almost a year while my arthritis kept getting worse and

>>worse. My family Dr. allowed me to try it and prescribed the

>>necessary treatment. After nine months he gave up and referred me to

>>a Rheumatologist who put me on Sulfazaladine and MTX. Within a

>>matter of three weeks I went from the wheelchair to walking around

>>the block every day. He kept me on MTX for a few months, then we

>>switched to Remicade because it is safer and more effective for me.

>>

>>For me, MTX, Sulfazaladine, and yes, Remicade have all been

>>miracles. This is true for many others as well.

>>

>>Let's not forget that any drug, including antibiotics, effect many

>>aspects of your metabolism - some of which are not at all

>>understood. Since each of us has a unique metabolism, it is safe to

>>say that each of us also has an ideal set of drugs that work best.

>>What works for you may do nothing for me. What is toxic for me may

>>not be for you.

>>

>>Having said all this, I strongly advise all of you to stop offering

>>advice to people in this forum regarding what drugs are best for

>>them. I took your advice and it nearly cost me my mobility. I can

>>only imagine how many others you have misled by your unqualified

>>advice and are now unable to walk because of it.

>>

>>Farewell,

>>Doug

>>

>>>>Biotech Company Says It Has Improved 2 Drugs

>>>>By ANDREW POLLACK (NYT)

>>>>Applied Molecular Evolution has developed what it says are

>>>>

>>improved

>>

>>>versions

>>>

>>>>of Remicade for rheumatoid arthritis and Rituxan for non-

>>>>

>>Hodgkin's

>>

>>>lymphoma.

>>>

>>

February 12, 2003

Dear Doug,

Sorry you have had such a bad time of it. In my daughter's case,

she was told to go home and put her affairs in order. But even the

rheumatologist who gave her the systemic scleroderma diagnosis told

her later, over the phone, " Well, the antibiotics can't hurt you. "

ly, we felt it would be insane NOT to try it, given her

prognosis without taking ANYthing.

After two years (this month) on the antibiotics (both oral and the

periodic clindamycin I.V.'s), most of her debilitating SD symptoms

are gone. Now her main concern is the multiple sclerosis she also

has.

You said,

" For me, MTX, Sulfazaladine, and yes, Remicade have all been

miracles. This is true for many others as well. " But are you cured?

" tried it for almost a year while my arthritis kept getting worse and

worse. My family Dr. allowed me to try it and prescribed the

necessary treatment. After nine months he gave up... " What happens

when you can no longer tolerate the Remicade? And, do you honestly

feel that 9 months or even one year is a decent trial period? Subscribers

to the rheumatic.org list only advise and suggest--it's ultimately YOUR

decision to do it or not. Naturally, something that has worked for so

many people is going to cause some excitement, and those people are

going to want to share that success with others.

Sincerely, Ellen McCool

rheumatic Re: Remicade