remicade

[Guest guest]

Thanks,

Bill

[ ] Remicade

Hi,

I am new to this group.

I have been on Methotrexate and Humira for a year with monthly lab work

which has been fine. Within 3 months of starting my psoriasis

placques cleared up totally on elbows and knees and ankles. I was

using a dermatologist who I highly respect, but he also recommended I

see a rheumatologist which I did last week. The rheumy recommended

Remicade as I now have psoriatic arthritis.

Anyone has experience with it?

Thanks,

Doris

[Guest guest]

I've been on Remicade every six weeks for nearly two

years. I also take Methotrexate. Given the condition I

was in when I started, I'd do it again because it did

wonders for me. Your mileage may vary.

When I started Remicade after 9 months on methotrexate

alone, everything hurt. I could hardly walk, I could

barely use my hands, and I had P covering most of my

body. Now, I feel good. I'm working a regular 8-hour

day as a marketing writer again. I've got enough

dexterity in my hands that I'm painting again. My

rheumy says my PA is " mostly under control " -- no

joint swelling (and no additional damage), no skin

flakes.

I often feel so good that I feel " normal " , but I am

still at risk for overdoing it. (As much as I enjoyed

dancing at my sister's wedding, I paid for it in pain

for several days.) I still have random bouts of joint

tenderness, tendonitis, brain fog, and fatigue. I

struggle with sinus infections. I've had a small flare

after each of the three airplane trips I made this

summer. Now that winter is coming, and I'm feeling a

flare coming on.

The needle insertion is the hardest part of the

treatment. My veins are small, hard to find, and easy

to collapse. At my last treatment, it took four trys

to get the needle in. I blew a vein in the back of

each hand.

Cost is another factor consider it carefully. Once you

start Remicade, you'll probably be on it every six

weeks with an unknown stop date.

--

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

Stein

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

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

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[Guest guest]

In a message dated 11/19/2006 3:56:58 A.M. Pacific Standard Time,

gofsnok2@... writes:

Has anyone on Remicade had a problem with their blood sugar

increasing? Ever since I started on Remicade my blood sugars started

creeping up.

Alison

Alison...I am having this same problem, and have gained some weight that I

can't seem to lose. The doctor's office keeps telling me these are not side

effects, but I don't know...

[Guest guest]

In a message dated 12/28/2006 2:18:32 P.M. Pacific Standard Time,

fam24@... writes:

The problem is that I am having facial

flushing and feel very heat intolerant and would like to know if

anyone elso taking Remicade has this problem.

Thanks

Janet

Hi Janet...

I had the facial flushing the first 3 times or so, then it went away. They

also recommended benadryl if it continued but it didn't. I also had some

heat intolerance but that went away too. You might want to ask them about the

benadryl.

What is the interval between your treatments? I was started at 8 weeks but

now do every 6 weeks. There is evidence that the drug is out of your system

after 4 weeks or so, so most rheumies will adjust if needed. They can also

increase your dose.

Hope that helps...

[Guest guest]

In a message dated 12/29/2006 7:33:39 A.M. Eastern Standard Time,

rachelviognier@... writes:

What is the interval between your treatments? I was started at 8 weeks but

now do every 6 weeks. There is evidence that the drug is out of your system

after 4 weeks or so, so most rheumies will adjust if needed. They can also

increase your dose.

Hi ,

Thanks for getting back to me so quickly. I am presently on a 8 week cycle

right now but last time after 6 weeks the Remicade wore off and I was in a

great deal of pain again. My next treatment will be in 7 weeks because I am

going away and want to get it before I leave. What is your experience with the

immune lowering problem? I have been sick for almost two weeks with a sinus

problem and cold. I took an antibiotic and I still feel sick and can't seem

to shake this thing. Is there anything that can be done. I know when I

took Enbrel, I could just stop it for a while but with Remicade this is not the

case.

Hope you had a Happy New Year.

Janet

[Guest guest]

In a message dated 1/1/2007 2:49:31 P.M. Pacific Standard Time,

fam24@... writes:

My next treatment will be in 7 weeks because I am

going away and want to get it before I leave. What is your experience with

the

immune lowering problem? I have been sick for almost two weeks

Hey Janet...

I would definitely track how you do at week 6 this time and ask if you can

go every 6 weeks vs. every 8 weeks.

I did get sick in December for the first time since being on Remicade, and I

had a hard time fighting it off. Up until then I had done a good job with

prevention, but I let myself get run down and tired. What has worked pretty

well for me is using a 50:50 mix of alkalol (a homeopathic mucus buster) and

saline solution at the first sign of any congestion in my nose or throat, lots

of handwashing or that purell stuff, and wearing a mask on the plane. I

think its tough once you do actually get sick, and my guess is it depends where

you are in your Remicade cycle...when I got sick, it was 1 week after my

infusion and I think that's why it was so hard to fight.

I hope you are feeling better soon...probably the stress of the holidays got

to you!

[Guest guest]

Hi friends:

My prayers are always with you.

It has been some time since I have posted.

I have been on Minocycline since August - starting at 200mg a day now on 100

a day. The higher dose made me " hurx " terribly.

I am back in school doing much better than 6 months ago. I have Scleroderma

and my hands are real bad with ulcerations and curvatures. Actually on

Christmas day I fell and fractured my wrist. I was again put on Foxamax which I

do

not like cause it affects my stomach so bad.

I read the posts on Remicade. I did not have Scleroderma before I got my

infusions. I had mono and a doctor here thought I had RA eventhough my Factors

were negative. I was so sick with mono that I agreed to get on Remicade. It

was new to the market and my doctor insisted on this treatment. I have since

learned to get second opinions.

I was put on high doses of Remicade January 2001 and in April 2001 I was

admitted to the hospital because it was toxic to my body.

Soon after I was diagnosed with Scleroderma. My doctor did write to the AMA

to let them know what happened to me. I have contacted and

re: above and only get a run around. I have gotten 3 letter of medical release

which I have sent and they clain they haven't gotten. I tried a local

attorney but he didn'ty think I had a case. I somewhere actually have the

doctors

medical record saying this medicine gave this to me.

I have asked repeatedly to my doctor to give me a copy of the letter they

sent out and a copy of the medical records..guess what..they claim they lost

it.

If anyone has heard of any class action suits please contact me.

God Bless you all and stay strong

from the beach

Maritza

[Guest guest]

In a message dated 06/01/2007 01:49:21 GMT Standard Time, levyarieh@...

writes:

Hi, I am new to this group, and I would like to ask PA who are

treated with Remicade. I am on it for about 3 years, the beginning

was great, my Psoriasis left me and travelled elsewhere. But lately,

its effect on my knees, ankles etc.. is less and less.

that's it for now. BFN

Hi Arieh,

I Just wanted to welcome you to the group. I'm not on Remicade so I couldn't

have helped you anyway even if I had answered you on time. lol I hope you did

get some answers to your question about its lessening effect on your joints. I

know all these drugs can stop being as effective and the amount of time it

works well (If it works at all) can vary.

Anyway, I'm glad you found us but sorry having this disease meant you had to.

Good luck,

[Guest guest]

Dear BFN,

I received Remicade for 5 1/2 years. I kept

asking why my rheumy would not increase the

dosage (even though it is based on your weight).

He decreased the amount of time between infusions

ffrom every six week to every four and then three

but it just lost it's effectiveness for me. This

is what PSA does, it reevaluates and thinks what

is normal is the " new " you with that med.

After mtx I went to enbrel injections.

________________________________________________________________________________\

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[Guest guest]

I wanted to know if anyone taking Remicade is like me. I feel like a

Remicade junky, I am having my treatment Thursday which is exactly 6 weeks.

Yesterday it wore off with a vengeance. I can't even lay on my left side in

bed

because my shoulder, elbow, and everything else is so painful. My knee is

swelling, my TMJ is hurting. Needless to say I feel like crap. The thing

that scares me is that I am in worse pain now that it just wore, then before I

even started the Remicade all together. I just wonder if now what happens

after 6 weeks will start in 5, then 4, etc. I have to research this but would

like to know if anyone knows why this is happening or has this problem also.

I'm a Remicade junky.

Janet in NY

************************************** See what's free at http://www.aol.com.

[Guest guest]

Personally I feel like a drug addict with all the pain killers and such I

take... It's a never ending story with all the medications we all take... Sorry

you feel so bad...

Love and peace always,

Shaun and Barb...

[Guest guest]

Virginia - Depending on what state you live in your son might qualify for Beckett Medicaid( they pay all copays and medicine that insurance won't pay.). We live in Georgia and our daughter qualified - it does not matter how much the family income is. We have insurance but when we had to advance to Enbrel - the insurance company began to bulk. A friend of ours - a Lt. Colonel in the army also qualified when there daughter was diagnosed with JRA. Hope it is helpful. Sandi Ken Hunter (9 Systemic)Get a sneak peek of the all-new AOL.com.

[Guest guest]

Virginia - Have you tried to apply for Medical Assistance through the state? Most states have some sort of juvenile program. In Minnesota it's called TEFRA, but each state has their own version. Also, one thing we have done with our insurance is to have a case manager assigned to our case. You need to call customer service and ask who is the case manager for your plan. Most insurances have one, it's just a matter of contacting them. They are almost always an RN and they are set up to help you! It's confidential and they can help with your appeal, etc. We were not able to get Caroline's Humira approved, but with the help of a case manager we were able to get it 100% covered. We also are in the process of getting a wheelchair for her as well as setting her up with a child life specialist.

As far as the Remicade goes, my understanding is that it should act immediately. Caroline was on Remicade for about 13 months and we just discontinued it this month and are moving on to Humira. Her rheumy said it's a fast acting medicine that should work in less than a week. For Caroline, she was taking 13/mg per kilo every four weeks and it still was not working. They also ran some labs this last time and learned that her body is rejecting the Remicade and that she actually has an allergy to it. That may be what is happening to Chris....

Good luck and I hope something works out for you.....

Alia and Caroline, age 5, poly and uveitis

Remicade

Hello to you all

I need some advice or maybe just some encouragement. You all have been

an encouragement to me just reading about what everyone is dealing with.

Our son, was diagnosed with pauciarticular jra in November of 03.

We've been through several different drugs (like a lot of you here)

naproxen, methotrexate, enbrel . . . now he is on ketoprofen (an nsaid

his stomach seems to like), arava (his liver couldn't handle enough mtx

to make much difference) and remicade. He's been on remicade since March

of 06. Our insurance paid for it for a year and honestly it was like

having a child with no or very little arthritis. We almost forgot what

the daily tears/ pain etc was about. In March of this year our insurance

refused to pay for Remicade any longer. was put on prednisone

until we could figure out what to do. Finally, the drug company,

centocor, agreed to give us the drug for 6 months. They were very nice

and easy to work with. We have been, in the meantime, appealling the

insurance and just this week got another rejection from them.

was getting his Remicade every 6 weeks before it was discontinued.

They were just getting ready to up his dose from 7.5mg/kg to 10mg/kg when

it was discontinued. ( he wasn't getting as good of results as

previously, but still pretty good). He went 10.5 weeks between

treatments during all of this. The first dose when he started back was

given at the 7.5mg/kg dosage and then another 7.5mg/kg in 4 weeks. He

didn't have great results, but was doing a little better. We waited 6

weeks before the next treatment was given and we did up it to 10mg/kg

(the top dosage he can get.). This was about 12 days ago and he is still

not doing great. He is still swollen in his hands/knees/maybe ankles and

toes, but says the pain is a little better. He is stiff in the mornings,

does ok from breakfast to lunch, and then is exhausted , in pain, feels

terrible and needs a nap after lunch and wants some tylenol. (he just

turned 11 years old) This is highly unusual for him. Yesterday he didn't

get a nap and went to bed at 7:30 pm. Maybe I just need to wait a little

longer and see if he starts feeling better. It bothers me that he says

over and over that he's not feeling good and seems to have little energy.

He is usually the energizer bunny. It scares me a little that this

higher dose of Remicade has thrown his immune system into something else.

Another thing that bothers me (and I realize he could be starting to hit

puberty and that could contribute to all of this) is that he went from

being very skinny to having bigger shoulders/ chest/ arms/ face in about

a month. This was after 2 months on prednisone. I'd love to think that

he's just a normal 11 year old boy that's growing up, but something nags

at me that something is not right.

He may have built up enough antibodies that Remicade is no longer an

option.

He also is extremely hypermobile and it is hard to differentiate what is

bothering him. The drs seem to think some of his swelling/ pain at night

is from the hypermobility and not the JRA. I'm not sure that I agree

with that. Physical therapy for muscle strengthening does seem to help

and he's been exercising in a pool all summer (per dr and pt

instructions)

I've often wondered if he didn't have some type of spondyloarthropathy,

but he is HLA B27 negative.

Anyway, I'd just like to hear some opinions from you all

Thanks

Virginia (11 pauci)

AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

[Guest guest]

HI, Virginia. Just a quick thing, my Chris

is also HLA-B27 negative but definitely spondy. So that is not something that

precludes that diagnosis.

Your son could be growing, or it could be

the meds, it is hard to tell at that age. They go through so many changes and

each child does it at a different rate. Chris’ growth spurt was really

around the age of 15 and he kept going until he was 6’4”. But never

did gain any weight. He weighs less now than he did at 14 when he was about 5’7”.

I am curious about why the insurance

company has decided to deny the Remicade. Have they given you any kind of

reason and if so, is there an appeals process that might work? I hate when I

hear of things like this happening. Michele ( 20, spondy)

From: [mailto: ] On Behalf Of P Woods

Sent: Sunday, July 29, 2007 1:46

PM

Subject: Remicade

Hello to you all

I need some advice or maybe just some encouragement. You all have been

an encouragement to me just reading about what everyone is dealing with.

Our son, was diagnosed with pauciarticular jra in November of 03.

We've been through several different drugs (like a lot of you here)

naproxen, methotrexate, enbrel . . . now he is on ketoprofen (an nsaid

his stomach seems to like), arava (his liver couldn't handle enough mtx

to make much difference) and remicade. He's been on remicade since March

of 06. Our insurance paid for it for a year and honestly it was like

having a child with no or very little arthritis. We almost forgot what

the daily tears/ pain etc was about. In March of this year our insurance

refused to pay for Remicade any longer. was put on prednisone

until we could figure out what to do. Finally, the drug company,

centocor, agreed to give us the drug for 6 months. They were very nice

and easy to work with. We have been, in the meantime, appealling the

insurance and just this week got another rejection from them.

was getting his Remicade every 6 weeks before it was discontinued.

They were just getting ready to up his dose from 7.5mg/kg to 10mg/kg when

it was discontinued. ( he wasn't getting as good of results as

previously, but still pretty good). He went 10.5 weeks between

treatments during all of this. The first dose when he started back was

given at the 7.5mg/kg dosage and then another 7.5mg/kg in 4 weeks. He

didn't have great results, but was doing a little better. We waited 6

weeks before the next treatment was given and we did up it to 10mg/kg

(the top dosage he can get.). This was about 12 days ago and he is still

not doing great. He is still swollen in his hands/knees/maybe ankles and

toes, but says the pain is a little better. He is stiff in the mornings,

does ok from breakfast to lunch, and then is exhausted , in pain, feels

terrible and needs a nap after lunch and wants some tylenol. (he just

turned 11 years old) This is highly unusual for him. Yesterday he didn't

get a nap and went to bed at 7:30 pm. Maybe I just need to wait a little

longer and see if he starts feeling better. It bothers me that he says

over and over that he's not feeling good and seems to have little energy.

He is usually the energizer bunny. It scares me a little that this

higher dose of Remicade has thrown his immune system into something else.

Another thing that bothers me (and I realize he could be starting to hit

puberty and that could contribute to all of this) is that he went from

being very skinny to having bigger shoulders/ chest/ arms/ face in about

a month. This was after 2 months on prednisone. I'd love to think that

he's just a normal 11 year old boy that's growing up, but something nags

at me that something is not right.

He may have built up enough antibodies that Remicade is no longer an

option.

He also is extremely hypermobile and it is hard to differentiate what is

bothering him. The drs seem to think some of his swelling/ pain at night

is from the hypermobility and not the JRA. I'm not sure that I agree

with that. Physical therapy for muscle strengthening does seem to help

and he's been exercising in a pool all summer (per dr and pt

instructions)

I've often wondered if he didn't have some type of spondyloarthropathy,

but he is HLA B27 negative.

Anyway, I'd just like to hear some opinions from you all

Thanks

Virginia

(11 pauci)

[Guest guest]

Thanks Michele

The insurance company says that it is not medically necessary and is experimental/investigational in children. We did go through the first step of an appeal and it was also denied. There are two more appeal steps, but now we're wondering if we're about done with Remicade- if has built up an immunity to it and we'll have to move on to something else. It is so frustrating and sad, because we had such good results. This may have happened anyway, but it could be that being off for 10.5 weeks added to the Remicade not working as well this time. Anyway, just wondered if anyone else has been off of Remicade and then back on and what kind of results they had? From talking to the drs and other people, it's not just our insurance that's dropping Remicade- it's happening everywhere. It's expensive and not FDA approved in kids with JRA, so they can do it. Humira is probably our next step and was saying last night that he hates shots. He's definitely not feeling well, so we'll just have to see what's next. Enbrel ran through our drug program, not our regular medical insurance and I'm assuming Humira will too, so it has to go through different insurance channels and hopefully we won't have any problem with it. We have excellent insurance on the whole, it's just a little frustrating that it's the insurance company and not the drs that get to make the decisions.

Virginia

On Mon, 30 Jul 2007 12:44:22 -0500 "Tepper, Michele" <MTepper@...> writes:

HI, Virginia. Just a quick thing, my is also HLA-B27 negative but definitely spondy. So that is not something that precludes that diagnosis.

Your son could be growing, or it could be the meds, it is hard to tell at that age. They go through so many changes and each child does it at a different rate. Chris’ growth spurt was really around the age of 15 and he kept going until he was 6’4”. But never did gain any weight. He weighs less now than he did at 14 when he was about 5’7”.

I am curious about why the insurance company has decided to deny the Remicade. Have they given you any kind of reason and if so, is there an appeals process that might work? I hate when I hear of things like this happening. Michele ( 20, spondy)

From: [mailto: ] On Behalf Of P WoodsSent: Sunday, July 29, 2007 1:46 PM Subject: Remicade

Hello to you allI need some advice or maybe just some encouragement. You all have beenan encouragement to me just reading about what everyone is dealing with. Our son, was diagnosed with pauciarticular jra in November of 03. We've been through several different drugs (like a lot of you here)naproxen, methotrexate, enbrel . . . now he is on ketoprofen (an nsaidhis stomach seems to like), arava (his liver couldn't handle enough mtxto make much difference) and remicade. He's been on remicade since Marchof 06. Our insurance paid for it for a year and honestly it was likehaving a child with no or very little arthritis. We almost forgot whatthe daily tears/ pain etc was about. In March of this year our insurancerefused to pay for Remicade any longer. was put on prednisoneuntil we could figure out what to do. Finally, the drug company,centocor, agreed to give us the drug for 6 months. They were very niceand easy to work with. We have been, in the meantime, appealling theinsurance and just this week got another rejection from them.was getting his Remicade every 6 weeks before it was discontinued. They were just getting ready to up his dose from 7.5mg/kg to 10mg/kg whenit was discontinued. ( he wasn't getting as good of results aspreviously, but still pretty good). He went 10.5 weeks betweentreatments during all of this. The first dose when he started back wasgiven at the 7.5mg/kg dosage and then another 7.5mg/kg in 4 weeks. Hedidn't have great results, but was doing a little better. We waited 6weeks before the next treatment was given and we did up it to 10mg/kg(the top dosage he can get.). This was about 12 days ago and he is stillnot doing great. He is still swollen in his hands/knees/maybe ankles andtoes, but says the pain is a little better. He is stiff in the mornings,does ok from breakfast to lunch, and then is exhausted , in pain, feelsterrible and needs a nap after lunch and wants some tylenol. (he justturned 11 years old) This is highly unusual for him. Yesterday he didn'tget a nap and went to bed at 7:30 pm. Maybe I just need to wait a littlelonger and see if he starts feeling better. It bothers me that he saysover and over that he's not feeling good and seems to have little energy.He is usually the energizer bunny. It scares me a little that thishigher dose of Remicade has thrown his immune system into something else.Another thing that bothers me (and I realize he could be starting to hitpuberty and that could contribute to all of this) is that he went frombeing very skinny to having bigger shoulders/ chest/ arms/ face in abouta month. This was after 2 months on prednisone. I'd love to think thathe's just a normal 11 year old boy that's growing up, but something nagsat me that something is not right.He may have built up enough antibodies that Remicade is no longer anoption.He also is extremely hypermobile and it is hard to differentiate what isbothering him. The drs seem to think some of his swelling/ pain at nightis from the hypermobility and not the JRA. I'm not sure that I agreewith that. Physical therapy for muscle strengthening does seem to helpand he's been exercising in a pool all summer (per dr and ptinstructions) I've often wondered if he didn't have some type of spondyloarthropathy,but he is HLA B27 negative.Anyway, I'd just like to hear some opinions from you allThanksVirginia (11 pauci)

[Guest guest]

Thanks so much Alia

That is a good idea to find out who is our case manager> My husband is type one diabetic and on an insulin pump and we've had to do that with him. I don't know why we didn't think of that.

We have not applied for medicaid. We would have if the drug company hadn't given us the meds. It's a little touchy for us to work with the state because we're crossing state lines for medical care and would have to switch doctors for some programs etc. We love our doctors and hate to have to go somewhere else. We're in a rural area and it's about 2.5 to 4 hours to a city big enough to have a ped rheumy.

That's interesting about the Remicade working within a week. That has always been our past experience. Did Caroline just keep needing more and more Remicade and then it quit working, or did it not ever work very well?

Thanks

Virginia

On Mon, 30 Jul 2007 11:15:02 -0400 aliaalan@... writes:

Virginia - Have you tried to apply for Medical Assistance through the state? Most states have some sort of juvenile program. In Minnesota it's called TEFRA, but each state has their own version. Also, one thing we have done with our insurance is to have a case manager assigned to our case. You need to call customer service and ask who is the case manager for your plan. Most insurances have one, it's just a matter of contacting them. They are almost always an RN and they are set up to help you! It's confidential and they can help with your appeal, etc. We were not able to get Caroline's Humira approved, but with the help of a case manager we were able to get it 100% covered. We also are in the process of getting a wheelchair for her as well as setting her up with a child life specialist. As far as the Remicade goes, my understanding is that it should act immediately. Caroline was on Remicade for about 13 months and we just discontinued it this month and are moving on to Humira. Her rheumy said it's a fast acting medicine that should work in less than a week. For Caroline, she was taking 13/mg per kilo every four weeks and it still was not working. They also ran some labs this last time and learned that her body is rejecting the Remicade and that she actually has an allergy to it. That may be what is happening to Chris....Good luck and I hope something works out for you..... Alia and Caroline, age 5, poly and uveitis Remicade

Hello to you allI need some advice or maybe just some encouragement. You all have beenan encouragement to me just reading about what everyone is dealing with. Our son, was diagnosed with pauciarticular jra in November of 03. We've been through several different drugs (like a lot of you here)naproxen, methotrexate, enbrel . . . now he is on ketoprofen (an nsaidhis stomach seems to like), arava (his liver couldn't handle enough mtxto make much difference) and remicade. He's been on remicade since Marchof 06. Our insurance paid for it for a year and honestly it was likehaving a child with no or very little arthritis. We almost forgot whatthe daily tears/ pain etc was about. In March of this year our insurancerefused to pay for Remicade any longer. was put on prednisoneuntil we could figure out what to do. Finally, the drug company,centocor, agreed to give us the drug for 6 months. They were very niceand easy to work with. We have been, in the meantime, appealling theinsurance and just this week got another rejection from them.was getting his Remicade every 6 weeks before it was discontinued. They were just getting ready to up his dose from 7.5mg/kg to 10mg/kg whenit was discontinued. ( he wasn't getting as good of results aspreviously, but still pretty good). He went 10.5 weeks betweentreatments during all of this. The first dose when he started back wasgiven at the 7.5mg/kg dosage and then another 7.5mg/kg in 4 weeks. Hedidn't have great results, but was doing a little better. We waited 6weeks before the next treatment was given and we did up it to 10mg/kg(the top dosage he can get.). This was about 12 days ago and he is stillnot doing great. He is still swollen in his hands/knees/maybe ankles andtoes, but says the pain is a little better. He is stiff in the mornings,does ok from breakfast to lunch, and then is exhausted , in pain, feelsterrible and needs a nap after lunch and wants some tylenol. (he justturned 11 years old) This is highly unusual for him. Yesterday he didn'tget a nap and went to bed at 7:30 pm. Maybe I just need to wait a littlelonger and see if he starts feeling better. It bothers me that he saysover and over that he's not feeling good and seems to have little energy.He is usually the energizer bunny. It scares me a little that thishigher dose of Remicade has thrown his immune system into something else.Another thing that bothers me (and I realize he could be starting to hitpuberty and that could contribute to all of this) is that he went frombeing very skinny to having bigger shoulders/ chest/ arms/ face in abouta month. This was after 2 months on prednisone. I'd love to think thathe's just a normal 11 year old boy that's growing up, but something nagsat me that something is not right.He may have built up enough antibodies that Remicade is no longer anoption.He also is extremely hypermobile and it is hard to differentiate what isbothering him. The drs seem to think some of his swelling/ pain at nightis from the hypermobility and not the JRA. I'm not sure that I agreewith that. Physical therapy for muscle strengthening does seem to helpand he's been exercising in a pool all summer (per dr and ptinstructions) I've often wondered if he didn't have some type of spondyloarthropathy,but he is HLA B27 negative.Anyway, I'd just like to hear some opinions from you allThanksVirginia (11 pauci)

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[Guest guest]

Hi again everyone. I noticed when these notes came through that there is an attachment. Please don't open it. I don't know what it is, but I didn't send an attachment. I surely hope it is not a virus that I'm sending out.

On Tue, 31 Jul 2007 05:45:22 -0500 P Woods <woodsrp@...> writes:

Thanks Michele

The insurance company says that it is not medically necessary and is experimental/investigational in children. We did go through the first step of an appeal and it was also denied. There are two more appeal steps, but now we're wondering if we're about done with Remicade- if has built up an immunity to it and we'll have to move on to something else. It is so frustrating and sad, because we had such good results. This may have happened anyway, but it could be that being off for 10.5 weeks added to the Remicade not working as well this time. Anyway, just wondered if anyone else has been off of Remicade and then back on and what kind of results they had? From talking to the drs and other people, it's not just our insurance that's dropping Remicade- it's happening everywhere. It's expensive and not FDA approved in kids with JRA, so they can do it. Humira is probably our next step and was saying last night that he hates shots. He's definitely not feeling well, so we'll just have to see what's next. Enbrel ran through our drug program, not our regular medical insurance and I'm assuming Humira will too, so it has to go through different insurance channels and hopefully we won't have any problem with it. We have excellent insurance on the whole, it's just a little frustrating that it's the insurance company and not the drs that get to make the decisions.

Virginia

On Mon, 30 Jul 2007 12:44:22 -0500 "Tepper, Michele" <MTepper@...> writes:

HI, Virginia. Just a quick thing, my is also HLA-B27 negative but definitely spondy. So that is not something that precludes that diagnosis.

Your son could be growing, or it could be the meds, it is hard to tell at that age. They go through so many changes and each child does it at a different rate. Chris’ growth spurt was really around the age of 15 and he kept going until he was 6’4”. But never did gain any weight. He weighs less now than he did at 14 when he was about 5’7”.

I am curious about why the insurance company has decided to deny the Remicade. Have they given you any kind of reason and if so, is there an appeals process that might work? I hate when I hear of things like this happening. Michele ( 20, spondy)

From: [mailto: ] On Behalf Of P WoodsSent: Sunday, July 29, 2007 1:46 PM Subject: Remicade

Hello to you allI need some advice or maybe just some encouragement. You all have beenan encouragement to me just reading about what everyone is dealing with. Our son, was diagnosed with pauciarticular jra in November of 03. We've been through several different drugs (like a lot of you here)naproxen, methotrexate, enbrel . . . now he is on ketoprofen (an nsaidhis stomach seems to like), arava (his liver couldn't handle enough mtxto make much difference) and remicade. He's been on remicade since Marchof 06. Our insurance paid for it for a year and honestly it was likehaving a child with no or very little arthritis. We almost forgot whatthe daily tears/ pain etc was about. In March of this year our insurancerefused to pay for Remicade any longer. was put on prednisoneuntil we could figure out what to do. Finally, the drug company,centocor, agreed to give us the drug for 6 months. They were very niceand easy to work with. We have been, in the meantime, appealling theinsurance and just this week got another rejection from them.was getting his Remicade every 6 weeks before it was discontinued. They were just getting ready to up his dose from 7.5mg/kg to 10mg/kg whenit was discontinued. ( he wasn't getting as good of results aspreviously, but still pretty good). He went 10.5 weeks betweentreatments during all of this. The first dose when he started back wasgiven at the 7.5mg/kg dosage and then another 7.5mg/kg in 4 weeks. Hedidn't have great results, but was doing a little better. We waited 6weeks before the next treatment was given and we did up it to 10mg/kg(the top dosage he can get.). This was about 12 days ago and he is stillnot doing great. He is still swollen in his hands/knees/maybe ankles andtoes, but says the pain is a little better. He is stiff in the mornings,does ok from breakfast to lunch, and then is exhausted , in pain, feelsterrible and needs a nap after lunch and wants some tylenol. (he justturned 11 years old) This is highly unusual for him. Yesterday he didn'tget a nap and went to bed at 7:30 pm. Maybe I just need to wait a littlelonger and see if he starts feeling better. It bothers me that he saysover and over that he's not feeling good and seems to have little energy.He is usually the energizer bunny. It scares me a little that thishigher dose of Remicade has thrown his immune system into something else.Another thing that bothers me (and I realize he could be starting to hitpuberty and that could contribute to all of this) is that he went frombeing very skinny to having bigger shoulders/ chest/ arms/ face in abouta month. This was after 2 months on prednisone. I'd love to think thathe's just a normal 11 year old boy that's growing up, but something nagsat me that something is not right.He may have built up enough antibodies that Remicade is no longer anoption.He also is extremely hypermobile and it is hard to differentiate what isbothering him. The drs seem to think some of his swelling/ pain at nightis from the hypermobility and not the JRA. I'm not sure that I agreewith that. Physical therapy for muscle strengthening does seem to helpand he's been exercising in a pool all summer (per dr and ptinstructions) I've often wondered if he didn't have some type of spondyloarthropathy,but he is HLA B27 negative.Anyway, I'd just like to hear some opinions from you allThanksVirginia (11 pauci)

[Guest guest]

Virginia - I would definitely check into it. I have to admit that we have really excellent coverage. Even with that though we have run into problems in the past getting things approved. We do pay a lot out of our pocket (usually between $7-$14 thousand a year), but considering Caroline's care costs about $15 thousand a month this is really a drop in the bucket. We have tried IVGG and Remicade in the past and both were authorized instantly. The Humira was one of our first real obstacles. The nice thing about the case manager is that they are there to help you. Yes, they are empolyed by the insurance company, but they are there to help you get the best care for your child. I know Remicade is not cheap, but hopefully the insurance company will see the benefit and approve it!

As far as the remicade is concerned, we initially started the Remicade because of her neck and jaw stiffness and her Uveitis. We were having quite a bit of trouble controlling everything w/o high doses of prednisone. We started off at 7.5mg every four weeks. Then we moved to 10mg every six weeks and then to 13mg every four weeks. Her max dosage is 15mg, but we never made it there. Every time we increased it we would see slight improvements for short periods, but then she would just crash back down. Towards the end the Remicade was only lasting for about 10-14 days. That's when we knew something was wrong. Caroline also had pretty severe reactions at each and EVERY infusion. In the beginning she broke out in hives head to toe. Then she started having these breathing reactions. About 20 minutes into the infusion (always 20 minutes in!), she would start turning bright redish then blue often accompanied by puking and difficulty breathing. They would immediately stop the infusion, run saline for 30-45 minutes and then restart the infusion. She always did okay after the restart so I guess they felt it was okay for her to continue with the treatments. That reaction happened about the last 10 times. It was torture because we always knew it was going to happen so all the nurses stood by waiting for the reaction to happen. Anyway's, her rheumy finally decided to run the labs to see if her body was allergic to the Remicade and low and behold she is.

So... we are moving on to Humira now. She gets her first injection on Thursday. Long before Remicade we did try Enbrel three different times, but never found success in that either.

Good luck - keep us posted!

Alia and Caroline, age 5, poly and uveitis

Remicade

Hello to you all

I need some advice or maybe just some encouragement. You all have been

an encouragement to me just reading about what everyone is dealing with.

Our son, was diagnosed with pauciarticular jra in November of 03.

We've been through several different drugs (like a lot of you here)

naproxen, methotrexate, enbrel . . . now he is on ketoprofen (an nsaid

his stomach seems to like), arava (his liver couldn't handle enough mtx

to make much difference) and remicade. He's been on remicade since March

of 06. Our insurance paid for it for a year and honestly it was like

having a child with no or very little arthritis. We almost forgot what

the daily tears/ pain etc was about. In March of this year our insurance

refused to pay for Remicade any longer. was put on prednisone

until we could figure out what to do. Finally, the drug company,

centocor, agreed to give us the drug for 6 months. They were very nice

and easy to work with. We have been, in the meantime, appealling the

insurance and just this week got another rejection from them.

was getting his Remicade every 6 weeks before it was discontinued.

They were just getting ready to up his dose from 7.5mg/kg to 10mg/kg when

it was discontinued. ( he wasn't getting as good of results as

previously, but still pretty good). He went 10.5 weeks between

treatments during all of this. The first dose when he started back was

given at the 7.5mg/kg dosage and then another 7.5mg/kg in 4 weeks. He

didn't have great results, but was doing a little better. We waited 6

weeks before the next treatment was given and we did up it to 10mg/kg

(the top dosage he can get.). This was about 12 days ago and he is still

not doing great. He is still swollen in his hands/knees/maybe ankles and

toes, but says the pain is a little better. He is stiff in the mornings,

does ok from breakfast to lunch, and then is exhausted , in pain, feels

terrible and needs a nap after lunch and wants some tylenol. (he just

turned 11 years old) This is highly unusual for him. Yesterday he didn't

get a nap and went to bed at 7:30 pm. Maybe I just need to wait a little

longer and see if he starts feeling better. It bothers me that he says

over and over that he's not feeling good and seems to have little energy.

He is usually the energizer bunny. It scares me a little that this

higher dose of Remicade has thrown his immune system into something else.

Another thing that bothers me (and I realize he could be starting to hit

puberty and that could contribute to all of this) is that he went from

being very skinny to having bigger shoulders/ chest/ arms/ face in about

a month. This was after 2 months on prednisone. I'd love to think that

he's just a normal 11 year old boy that's growing up, but something nags

at me that something is not right.

He may have built up enough antibodies that Remicade is no longer an

option.

He also is extremely hypermobile and it is hard to differentiate what is

bothering him. The drs seem to think some of his swelling/ pain at night

is from the hypermobility and not the JRA. I'm not sure that I agree

with that. Physical therapy for muscle strengthening does seem to help

and he's been exercising in a pool all summer (per dr and pt

instructions)

I've often wondered if he didn't have some type of spondyloarthropathy,

but he is HLA B27 negative.

Anyway, I'd just like to hear some opinions from you all

Thanks

Virginia (11 pauci)

AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

[Guest guest]

Your doctor should be able to convince the insurance company to put you on

remicade. A good doc knows what to do, though it will likely involve an appeals

process. When I was first diagnosed, my rheumatologist wanted me on Enbrel. It

took 3 appeals and sending x-rays but they approved it finally.

Joanna Hoelscher

630-833-7361

[Guest guest]

Hi,

I guess the only good part about pain is knowing how

much better you'll feel if (when) it goes away. Do you

use any OTC or prescription topical lotions? They can

provide some relief. Also try icing and heating.

Unfortunately, the more inactive you are, the worse

you'll feel, so you need to do what you can to stay

moving.

I'd also suggest talking to your PCP about treatment

for depression. Chronic pain is a real downer. It

impacts every aspect of your life.

Another suggestion would be to see about a referral to

pain management. I have been in some very dark places

pain wise in the past few years, and pain management

was a god-send. Pain medication has given me my life

back in terms of being able to work, exercise and

enjoy a better quality of life.

Be firm and emphatic with your PCP on how this is

impacting your life and that you need to take some

action. In the meantime, have a blessed holiday

season.

warm blessings,

jane

[Guest guest]

Hi Harv. Since I have had ReA for 27yrs and you for 30yrs, maybe we need

to start an Oldtimers section here. Hope you continue to do well. Barb

[]

>

> Hello everyone, I have two things I'd like to share. I have had

> Reiter's for thirty years and I have been on Remicade for a year now,

> and I still highly recommend it. The stuff really changed my life, for

> the better. Also, I get an inflamed SI joint pretty often. Take

> Care, Harv in Michigan

>

[Guest guest]

PATTI - all your e-mail gets returned to me!! don't like to post off-topic!! but, were you ever taking 6MP for your crohn's? e-mail me direct with answer!!

marshiris@...

crohn's disease - 17 years

LDN CREAM - 1 YEARGet the scoop on last night's hottest shows and the live music scene in your area - Check out TourTracker.com!

[Guest guest]

Im interested in Humaria as well. TNF blocker.

From: CELIA DANKS <celia@...>Subject: [low dose naltrexone] remicadelow dose naltrexone Date: Tuesday, July 15, 2008, 9:25 AM

Is it OK to take remicade with LDN? Sorry for having to ask, but this question is for someone else who is interested.. .

Thanks

Celia, Scotland.celiadawsholm (DOT) demon.co. uk

[Guest guest]

>

> Is it OK to take remicade with LDN? Sorry for having to ask, but

this question is for someone else who is interested...

> Thanks

> Celia, Scotland.

> celia@...

************************************************************

Celia,

There is a list of " Drugs Not to Take with LDN " that I will send to

you via private email (I got from Crystal – she has posted it here a

few times). I know that one member here is taking Remicade in

conjunction with LDN and states that " his treatment option " is

working very well for him...............but Remicade is one of the

drugs on the (do not take with LDN) list.

Personally, I found LDN while researching treatment options for

Crohn's / Colitis because I refused to " sign up " for Remicade or

Humira. I feared the extreme (harmful) side effects and I was

uncomfortable about starting a treatment which has a reputation of

losing effectiveness sooner than later.

My Humble Opinion (MHO) would be to " Go Directly To LDN " because

(personally) I have gotten SO MUCH benefit from it, in just 4

months. I received relief from symptoms on the first day and I feel

that I am well! You can see many posts here about how LDN has helped

many, many people.

Note: Remicade should be out of your system for 50 days before

starting LDN because they MAY conflict with each other. (info

provided to me through a friend here) Humira has " half life " and I

don't believe that there is much of a wait time to start LDN, but I

would probably wait for a week or two just to make sure the Humira

didn't compromise the LDN.

Of course, " treatment options " are exactly that... " options " so it is

your choice (or in this case...your friend's choice).

Best of luck to you and your friend!

Kindest Regards,

Patti (a/k/a livinwithcrohns)

*dx Crohn's - June 1978

*surgery - Dec. 2002 - Ileocolectomy/resection

*dx Crohn's/Colitis/Acid Reflux - Feb. 2005 (2006)

*4.5 mg LDN user since March 2008

" History is made by those who do not go blindly into the night... "

[ L. Ware, Private Investigator - 5/14/08 The Daily Advisor]

[Guest guest]

Patti, that was great, thanks so much...... I will pass the info along. I myself have IBS and LDN has sure put a halt to that.......

Celia