remicade

[Guest guest]

,

     I have had two infusions of Remicade.  I am still on what they call the

loading dose.  I have had no adverse reactions whatsoever.  The only problem I

have is that I am very tired the first day and have a dry mouth.  I think that

is from the benadryl I take with it.  However, I have not had any positive

reaction as of yet either.  But, I haven't given up hope yet.  I will take my

third infusion on Friday.  Here's hoping!!

     I would definitely give it a try  if I  were you.  They monitor  you very 

closely  during the  infusion and if you have an adverse reaction  they will

stop  your infusion.  Good  Luck!   I hope  this one  will work for you.

    Ronda

-

[Guest guest]

I am on Enbrel injections once a week. I am glad to hear there

is something else out there. Without the injection I am unable to

walk. Next time I go to my doctor I can name the new treatment that

is out.

" debbutchdebnusblue " <debbutchdebnusblue@...>

[Guest guest]

Hi ,

I used Remicade for almost 4 years and felt wonderful while using it. I had

great improvement in both the PA and the P. I had no problems until the

last 2 years and then I started developing a number of infections. I had a

number of skin infections and then had 2 really nasty infections that put me

in the hospital for a week each time so I had to discontinue Remicade. I

couldn't risk anymore infections. I'm now using Humira and not finding it

as effective as the Remicade for me. If you haven't had any previous

problems with infections, I would say to try it. It really did help with my

PA/P.

[Guest guest]

I've been on Remicade every 4 weeks for the past year and a half, and it's the

only thing that works for my skin (palmar plantar pustular psoriasis) as well as

my joints. No reactions, no problems (other than taking 1/2 day off each month

for the infusion, which I've been able to work around). I've been thrilled with

it.

Jaye Eldridge <jayesails@...>

[Guest guest]

Actually, according to my doctor, Remicade is the precursor to Enbrel and

Humira -- and has been out and used successfully for years.

In my case, Enbrel didn't do much for me. And Humira isn't doing much

better. So our next step is to try Remicade. My rheumy said that it's

trial and error to figure out which medication works the best for a

particular individual.

Patty

[Guest guest]

,

I have been on Remicade along with methotrexate for...has it been 2

years? I think so, or close to 2 years, anyway. I have never had any

problems other than an infection every once in a while, and who says

I wouldn't have gotten them anyway? I swim a lot and am prone to ear

infections. I just make sure to go to the doc sooner rather than

later when I feel an infection possibly coming on.

As for my arthritis, it has helped me immeasurably. I feel like I

could be on one of the corny Remicade DVDs. Because it did give me my

life back. I was scared, too, when I read all the side effects. But

at that point in my life- getting better or dying both sounded good

to me. I couldn't live in the amount of pain I was in. I couldn't

walk, I couldn't go to the bathroom without help. Now I can run,

bike, and work. It is a personal decision and if you try it, I hope

it helps you, too.

All the best,

Tammie

[Guest guest]

,

I first was on Enbrel for five years and it worked well. The doctor and I

thought we could do better with Remicade. Three years later and I have no

regrets and I have never had any adverse side effects. They will monitor you

closely. Report any concerns no mater how small they may seem, they will not

become annoyed with you. Please give it a try most meds in this class have

similar side effects and I believe that if you have tolerated the Enbrel and

Humira you have even less chance of an adverse effect. Years ago I was on

azulfidene I had awful migraines from it, allergic reaction. So my two cents is

try it!

Best Wishes,

Eileen

[Guest guest]

Ronda,

Please keep us updated on how you're doing. I'm still debating

whether or not I want to attempt it but I sure hope it works for you!

[Guest guest]

I think Remicade has been around even longer than Enbrel. Please

someone correct me if I'm wrong.

" " <harleygirl@...>

[Guest guest]

I'm still waiting to find out the results of all the new tests he ran

last week and I plan to talk to him about it more before deciding.

One of the test they did I've never heard of. Has anyone else been

tested for Cryoglobulin?

" " <harleygirl@...>

[Guest guest]

Thank you for taking the time to respond and I'm glad to hear so many

people seem to really do well with it. My doctor seemed completely

confused as to why the other two drugs aren't working. He keeps

questioning my symptoms. As though I want to have this disease and

give myself injects every week....I mean c'mon, seriously. Sorry just

needed to vent for a minute~

" " <harleygirl@...>

[Guest guest]

My husbands response was maybe I should stop looking all these drugs

up online since he knows I'm a worrier and just freak myself out! He

knows me well : )

" " <harleygirl@...>

[Guest guest]

You're right. According to my rheumy, Remicade has been around for more

than 15 years (possibly longer).

Enbrel less than five.

PR

[Guest guest]

Hey quick question - I am getting pre-approved for Remicade and it

sounds like it may cost around 400$ a time- does this sound

exceedingly high to anyone?

" mike_jes " <JesMcGowan@...>

[Guest guest]

With my co-pay, I paid about 225.00 a time and I quit about a 1 1/2 years

ago so it depends a lot on your insurance.

[Guest guest]

I was on Remicade about 5 years ago and first got my infusion in the hospital

and the bill was $12000 an infusion.  When my insurance changed from a 0%

coinsurance to a 10% coinsurance I got the infustion at the dr.'s office and it

was much less.  I don't recall the cost but the drug is very expensive!

Gilchrist <gilchrist414@...>

[Guest guest]

When I used to go to the local hospital to get Remicade the insurance company

would send me a bill for the total visit and it would be $19,956.  No that is

not a mistake.  I guess call it getting over on the insurance company but that

is how much the hospital charged them for the chair, meds, and IV supplies.

Laws <bglaws23@...>

[Guest guest]

I'm on a mommy board and one of the moms is a Remicade infusion nurse and

sent me some info about Remicade. Regarding the cost, here is what she told

me:

" Remicade is not as toxic on the liver as MTX is. It is VERY expensive, if

you don't have good insurance. It costs about $1000 per vial, each vial

=100mg. The average person is on 300-600mg. (Although I have a few patients

getting 900 and 1000mg!). It is weight based for P.A. You would start at 5

mg/kg. And then it can be tweaked upwards as you mentioned to a max dose of

10mg/kg. (divide your wt. In lbs. By 2.2 to get your wt. In kg.) "

That sure helps explain why it costs SO much! I've not yet tried it and

although tempted, because of the cost, I hope to save it as a drug of last

resort. I'm afraid that I will eventually reach my one million dollar

lifetime maximum " allowed by our insurance company, and I can see doing it

much faster if I were taking this. I'm just 42, with hopefully a lot more

years left to need insurance, you know?

in NC

[Guest guest]

,

I'd be curious to know how often she sees negative reactions to Remicade during

and/or post infusion.  As someone who is trying to make a decision about whether

or not to begin infusions the fear of a severe reaction is what is keeping me up

at night contemplating if the risks are worth it.  I need to discuss it with my

rheumy this week and he wants to set it up but I'm very apprehensive. I haven't

had any problems with Humira or Enbrel however they didn't provide any relief.

Bay Area, CA

[Guest guest]

,

I think that is the million dollar question, so to speak.

It wouldn't be the fact that you took LDN that might keep you from being

able to go back to Remicade. The issue is a general one with Remicade -

we've been told that if you are off Remicade " too long " (undefined term)

between infusions, when you try to restart, you could have severe

allergic reactions and/or the Remicade might not be effective. Perhaps

you wouldn't have these problems and you could resume Remicade just

fine. But if you did have problems and found LDN hadn't worked AND then

you can't go back on Remicade, what do you do then? That is the issue

keeping my husband from backing me 100% in my efforts to have my son

make the switch. It becomes more involved when you're making decisions

for someone for whom you're responsible vs. for yourself.

I know on this forum takes Remicade and LDN concurrently and it

works for him.

Skip's Pharmacy said to be off Remicade for 50 days before starting LDN

so the two meds don't counteract each other (which they might not given

's experience, which he says is his personal experience, not

necessarily true for all.)

So I guess it comes down to what you are comfortable trying.

Good luck!

Sally

[Guest guest]

From

all I hear is that you can’t mix both treatments at the same time, they counter

act each other. If you can, that may be an option. Do you know how to get in

touch with ? I would love to har what he or anyone else has to say about

this.

Thanks

for the info,

From:

low dose naltrexone [mailto:low dose naltrexone ] On

Behalf Of Beatty

Sent: Wednesday, August 27, 2008 5:00 PM

low dose naltrexone

Subject: [low dose naltrexone] Re:Remicade

,

I think that is the million dollar question, so to speak.

It wouldn't be the fact that you took LDN that might keep you from being

able to go back to Remicade. The issue is a general one with Remicade -

we've been told that if you are off Remicade " too long " (undefined

term)

between infusions, when you try to restart, you could have severe

allergic reactions and/or the Remicade might not be effective. Perhaps

you wouldn't have these problems and you could resume Remicade just

fine. But if you did have problems and found LDN hadn't worked AND then

you can't go back on Remicade, what do you do then? That is the issue

keeping my husband from backing me 100% in my efforts to have my son

make the switch. It becomes more involved when you're making decisions

for someone for whom you're responsible vs. for yourself.

I know on this forum takes Remicade and LDN concurrently and it

works for him.

Skip's Pharmacy said to be off Remicade for 50 days before starting LDN

so the two meds don't counteract each other (which they might not given

's experience, which he says is his personal experience, not

necessarily true for all.)

So I guess it comes down to what you are comfortable trying.

Good luck!

Sally

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[Guest guest]

Remicade

Posted by: "travis30677" travisamarshall@... travis30677

Tue Aug 26, 2008 5:20 am (PDT)

Is it true that if you stop taking remicade and begin LDN you cannot go back to remicade if LDN doen't work?

Hi...

I have commented on this issue before, and will do it again - I have been on Remicade since ultimo 2004 and have had a break in infusions lasting for almost a year. I have reassumed these infusions ultimo 2007 WITH NO ADVERSE REACTIONS at all - this was before knowing of LDN, which I began mid april this year - I also was told (by this group) that LDN and Remicade and other immuno-modulators would posibly not work together - and LDN was not of much benefit for me in the beginning, but skipping 6MP (Imuran) 1st. of may seem to have done the trick for me - LDN WORKS concurrent with Remicade - I have three "issues" - Crohn's, Arthritis and Psoriasis - the Arthritis part has gone allmost COMPLETELY, the Psoriasis has diminished somewhat and for the Chrohn's part I have experienced some 50% reduction in pain and bowelmovements - the rest I believe is due to some pathogens (Candida or other) which I currently deal with by other means ("Stabilized Oxygen", a sanitizer and VERY STRONG killer of pathogens - NON TOXIC to the human body if correct doses are taken - the use of this chemical was told me by another member of this group) - the latter is still in its early stages, but I already DO FEEL SOME CHANGE in my situation - as I may have had such infection(s) for 30+ years, I may expect this "cleansing" to take some time to heal (some BAD Herxheimer-reactions!!)

As of yet I'm on no other medication than Remicade every 6th week, LDN and this "chemical" (which is NOT a drug) - my ailments are improving day by day, and I hope to be able to skip Remicade as well soon - time and situation will show.

IF you have been on LDN when off Remicade and reassumes Remicade for some reason, I don't think that matters - as said before, "conclusions based on theories, assumptions and guesswork are plenty" - you HAVE to filter theese informations through "common sense" and make your own conclusions in all this - though all assumptions are theoretical (even the function of LDN is theoretical!) we still want to be assured that "we do the right thing" - as of yet all information given is anecdotal, and that is OK, but be carefull not ot raise any conclusion to be "the one and only" - time and experience MIGHT show otherwise!!!

Above is MY experience so far - I shall NOT by this promote the use of Remicade or Stabilized Oxygen - the latter may be an OPTION (and quite controversial to some?) for those who try to fight off Candida or other pathogens, but it is SOLELY up to each and everyone to make their own decisions - I have brought forward what seem to work for ME, and that's all there is to it - but PLEASE check out and do some research to the possibility that your ailment (ANY disease!!) MIGHT be caused by some pathogen!!!

I KNOW this is a LDN forum - and the above is also MY experience with LDN - what it can do and what it can't - in cases where LDN seem NOT to work, this may be due to pathogens rather than other drugs - or BOTH - I'm still in the "learning and educational phase" - as a matter of fact, so are we all?? - and we all will be so for a looong time - hopefully you will be able to find the recipe "that works for you" - keep on searching and asking - eventually things WILL be better - I REALLY hope so...

All my best to all of you..

[Guest guest]

Yes Sally, here I am...

I have written an ansver to this Remicade versus LDN - theese two combined works FINE for ME, but this is of course just one experience - I will NOT raise my experience to be valid for each and everyone, as we are all different - though the fact is that my disesae history shows that my immune system have a tendency to react STRONGLY towards any "foreign matter" that enters my body, but I have NEVER had any adverse reactions to Remicade - not before stopping infusions, not after resuming and not now ))

I actually think the manufactor's of Remicade have found been better methods to rinse their product for proteine-residue - the first released (several years ago) Remicade products was derived from mice, to day it is made by gene-modified yeast or bacteria - this makes it easier to control the whole process, especially they do not have to worry about mice protein to be in the solution - this is IMPORTANT, as this protein-residue was actually what caused adverse reactions earlier (of all thing our body racts against, foreign proteines is THE MOST immune-triggering substance!!)

As I HAVE HAD (and still have) some TREMENDOUS RELIEF from Remicade and I will not feel guilty of saying this (not even on this LDN forum) - if someone here don't like this, it's their problem - in stead of advocating that LDN and Remicade is NOT to be combined, PLEASE let your mind be open for other possibilities - MY CASE shows otherwise, and if other people DARE to try LDN when actually on Remicade, more positive experiences may be revealed??

IF someone has a problem with Remicade NOT being a LDN - topic, I will have to say: MANY of those diseases treated with LDN is also treated with Remicade - this goes for Crohn's/UC and Arthritis cases - that makes Remicade a NATURAL ISSUE on this board - as does Imuran, opioids and several other medications named here every day.

AGAIN - I SHALL NOT BY ANY MEANS ADVOCATE REMICADE - the use of this medication is a decision to be made INDIVIDUALLY - but some are allready on this medication, and some are due to have it soon (especially if there is a severe flare-up) - DO WHAT YOU HAVE TO DO - and continue LDN if you are that lucky to have it - to my oppinion you can ALLWAYS stop Remicade AND reassume it when needed - the "problem" about stopping/reassuming Remicade is not coming from this group, it's actually some gastro's and specialists that have had (and have?) this issue - this possibly based on the "mice-protein-residue-problem" as explained above...

Last but not least - I DO ADVOCATE LDN - it has helped my disease(s) A LOT - I do still have some issues to deal with, epecially possible Candida owergrowth - I have explained my remedies against this elsewhere and will not repeat this too much, as this is somewhat controversial ))

You may write me privately if needed...

My best to all of you

[Guest guest]

I'd go to a foot doctor. I have orthotics. I though the " hard " would

bother me, but it hurts when I don't wear them :-) I wear only tennis

shoes, you replace their insole with the orthotic. I too am on Remicade

with MTX and Aravia. It was around 6 months before I really started

feeling it. Now when I go and I feel better within two days if I had been

over doing it or went a week late.

Kate G

Hashi's

AS

At 12:51 PM 12/6/2008, you wrote:

>Hi all.? I've not been present in the group for?a while.? I have Reactive

>Arthritis, AS and now crones.? I am unable to take any anti inflammatories

>as they cause plumbing problems.? I've been through basically all the

>DMARDs, methotrexate, etc.? They started me last Thursday on Remicade.?

>Just curious how long it has taken for people to tell it is working?? Also

>I am having severe foot pain (ball of the foot, ankle and spreading up the

>ankle now).? They took an xray and nothing is broken, so basically they

>stopped looking and said it is the arthritis.? What are people using in

>their shoes or to steady their ankle?? Rheumy said hard shoe inserts would

>be painful.? I've tried the?Dr.Scholls and all the over the counter

>inserts.? He mentioned a New Balance store which I haven't had a chance to

>visit.? Just curious if anyone knows anything about them or has any

>advice.??I just feel that there is something else wrong in the foot

>besides the arthritis.? Thanks for any help you can provide.? Kathy from WI

[Guest guest]

I was on Remi for four years and really liked it.

I had few side effects.

The main one was that at first any cuts or even the infusion sites

themselves were very slow to heal. As time passed that disappeared though.

I apparently had some high blood pressure spikes during the infusion so

that one provider required me to take an antihistimine beforehand.

I would often get a little headache during the infusion and felt generally

zoned out. In fact I would often sleep through it I was so drowsy.

When I first started taking it I almost immediately notice the pain in my

fingers went away. the one thing it never did help was any pain in my

spine or lower back.

Four years ago we moved and I had a glitch in my medicaid between states

so I missed an infusion. About that time I discovered glucosamine and

decided to stay with that because it seemed to help. At this point my

rheumy is trying to get me back on Remi. He did offer something less hard

on my liver...plaquenil/sulfasalazine cocktail. Of cousre Plaq does have

its problems too.. He would be happiest right now if I did go back on Remi

and I think eventually that will happen.

Hope this helps!

Liz Kilpatrick

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

cities

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Life has no limitations, except the ones you make. + Les Brown

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EMAIL: juliette@...

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

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