Starting Remicade and pretty nervous

[Guest guest]

I've been o Remicade for the last 15 months, and prior to that was in a clinical trial where I did get the Remicade. I haven't had any bad side effects. In fact, my experience has been great.

I was on oxygen 24/7-- and now only have to have it at night or when i'm walking around in higher elevations. It has also helped my cognitive stuff, although I am still having some neuro problems. Most days I can find where I parked my car-- so this is good. (it was a major problem before the Remicade.)

What I notice is that I have a bit more problem with bouncing back after the infusions, and I get mine every 28 days.

Initially, they will start you out at the 1st infusion, 2wks later, a 2nd infusion, then 4 wks after that- a 3rd, then they'll go out to 8 wks. If you find that you don't get thru to 8 wks wo the sarc symptoms coming back- then they can back it down to 6 wk intervals, and back to -as often as 4 wk intervals.

Some of the people that have tried it have had problems with allergic reactions-- if that happens- it happens quickly during the 1st or 2nd infusion. Generally, taking Benadryl before or with the infusion keeps that problem at bay.

Some people will have some problems with nausea. I found that if I eat a good meal (breakfast of eggs, etc) that I'm fine.

After the very first infusion I got-- I had a wonderful all over body flush from it-- and then I was fine. So after a couple of hours hanging around USC-LA infusion center--- I caught a taxi, and my flight home to Sacramento, where my hubby picked me up. I did sleep for a couple of days afterward-- and now that I get the infusions every 4 wks (28 days) it is taking about a week to recoup-- but then I feel pretty good for the next 2 1/2 -3 wks.

Remicade has been around for several years-- and 750,000 people are on it for Rheumatoid Arthritis and Chrons. So it has a good track record.

You do have to take Methotrexate with it-- so that you don't build anti-bodies against the Remicade. Also, you must take Folic Acid daily. This keeps you from developing pernicious anemia. You'll get a blood test each month, CBC and Liver Function. That way if you are getting any side effects in the way of lymphoma or leukemia, they can catch it early and get it under control.

For me, it's been a huge blessing. Huge. The pain in my spine is no where near what it was-- and I have use of my hands and thumbs. My thumbs had actually contracted into the palms of my hands, and I couldn't straighten them out. 1st infusion, and 2 hrs later-- my thumbs were working. ((Fortunately, I had continued to massage the muscles and ligaments in them so they could respond). I haven't had to take any morphine since I've been on the Remicade.

I know Rose, Kim, Darlene and a couple of others have had allergic reactions-- and I'm sure that Darlenes infection probably stemmed from the lowered immune system.

Remicade.com has an info #, where you can call and ask questions. They are going to tell you that they don't have info regarding use of it for sarcoidosis-- but if you ask about arthritis improvement, cognitive improvement, etc-- you can get some answers.

Hope this helps, and we'll be seeing it working for you.

Tracie

NS co-owner/moderator

[Guest guest]

Looks like I will be starting Remicade in about 2 weeks. I'm pretty

nervous. Has anyone looked into Remicade recently.? There is a website

from lawyers who are representing patients with bad side effects. I

know the lawyer site isn't unbiased, yet I wonder. How safe is this

stuff? I really wish I did not have to take it. Unlike some of you I

am currently not very sick. My pattern is that as soon as I get down

to a low dose of prednisone then I get VERY sick for 5-6 months, then

I'm OK until I taper down, then I get sick again. Prednisone must now

be totally out of my future due to it's bad sick effects so I probably

don't have a choice here. But I'm scared. How many of you are taking

or have taken Remicade? How many have had bad side effects? Thanks for

sharing.

[Guest guest]

Tracie,It's great that you can take the remicade. Your benefits from it will help others to have hope that it will work for them. It sounds like you weren't on steroids prior to taking the remicade. With the cellcept it seems that it goes hand in hand with prednisone so that shouldn't be an issue for me (hopefully)....this disease forces our hand to try stuff we wouldn't normally even think of....scary paths that we're on for sure.Beckyrd tyjtiodaat@... wrote: I've been o Remicade for the last 15 months, and prior to that was in a clinical trial where I did get the Remicade. I haven't had any bad side effects. In fact, my experience has been great. I was on oxygen 24/7-- and now only have to have it at night or when i'm walking around in higher elevations. It has also helped my cognitive stuff, although I am still having some neuro problems. Most days I can find where I parked my car-- so this is good. (it was a major problem before the Remicade.) What I notice is that I have a bit more problem with bouncing back after the infusions, and I get mine every 28 days. Initially, they will start you out at the 1st infusion, 2wks later, a 2nd infusion, then 4 wks after that- a 3rd, then they'll go out to 8 wks. If you find that you don't get thru to 8 wks wo the sarc symptoms coming

back- then they can back it down to 6 wk intervals, and back to -as often as 4 wk intervals. Some of the people that have tried it have had problems with allergic reactions-- if that happens- it happens quickly during the 1st or 2nd infusion. Generally, taking Benadryl before or with the infusion keeps that problem at bay. Some people will have some problems with nausea. I found that if I eat a good meal (breakfast of eggs, etc) that I'm fine. After the very first infusion I got-- I had a wonderful all over body flush from it-- and then I was fine. So after a couple of hours hanging around USC-LA infusion center--- I caught a taxi, and my flight home to Sacramento, where my hubby picked me up. I did sleep for a couple of days afterward-- and now that I get the infusions every 4 wks (28 days) it is taking about a week to recoup-- but then I feel pretty good for the next 2 1/2 -3 wks.

Remicade has been around for several years-- and 750,000 people are on it for Rheumatoid Arthritis and Chrons. So it has a good track record. You do have to take Methotrexate with it-- so that you don't build anti-bodies against the Remicade. Also, you must take Folic Acid daily. This keeps you from developing pernicious anemia. You'll get a blood test each month, CBC and Liver Function. That way if you are getting any side effects in the way of lymphoma or leukemia, they can catch it early and get it under control. For me, it's been a huge blessing. Huge. The pain in my spine is no where near what it was-- and I have use of my hands and thumbs. My thumbs had actually contracted into the palms of my hands, and I couldn't straighten them out. 1st infusion, and 2 hrs later-- my thumbs were working. ((Fortunately, I had continued to massage the muscles and ligaments in them so they

could respond). I haven't had to take any morphine since I've been on the Remicade. I know Rose, Kim, Darlene and a couple of others have had allergic reactions-- and I'm sure that Darlenes infection probably stemmed from the lowered immune system. Remicade.com has an info #, where you can call and ask questions. They are going to tell you that they don't have info regarding use of it for sarcoidosis-- but if you ask about arthritis improvement, cognitive improvement, etc-- you can get some answers. Hope this helps, and we'll be seeing it working for you. Tracie NS co-owner/moderator

Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small Business.

[Guest guest]

Thanks for your replies. I feel a bit better now. Hadn't read anything

about having to take methotrexate and folic acid. I'll bring it up

with the dr today. I am already taking imuran. Perhaps that will do

the same thing? How are people monitored? I have mixed feelings about

the nurse I usually get for infusions (I used to get IVIG). She srewed

up pretty badly twice before and I am worried about her " monitoring " me.

I've been o

Remicade for the last 15 months, and prior to that was in a clinical

trial where I did get the Remicade. I haven't had any bad side

effects. In fact, my experience has been great.

>

> I was on oxygen 24/7-- and now only have to have it at night or

when i'm walking around in higher elevations. It has also helped my

cognitive stuff, although I am still having some neuro problems. Most

days I can find where I parked my car-- so this is good. (it was a

major problem before the Remicade.)

>

> What I notice is that I have a bit more problem with bouncing back

after the infusions, and I get mine every 28 days.

>

> Initially, they will start you out at the 1st infusion, 2wks later,

a 2nd infusion, then 4 wks after that- a 3rd, then they'll go out to 8

wks. If you find that you don't get thru to 8 wks wo the sarc

symptoms coming back- then they can back it down to 6 wk intervals,

and back to -as often as 4 wk intervals.

>

> Some of the people that have tried it have had problems with

allergic reactions-- if that happens- it happens quickly during the

1st or 2nd infusion. Generally, taking Benadryl before or with the

infusion keeps that problem at bay.

>

> Some people will have some problems with nausea. I found that if I

eat a good meal (breakfast of eggs, etc) that I'm fine.

>

> After the very first infusion I got-- I had a wonderful all over

body flush from it-- and then I was fine. So after a couple of hours

hanging around USC-LA infusion center--- I caught a taxi, and my

flight home to Sacramento, where my hubby picked me up. I did sleep

for a couple of days afterward-- and now that I get the infusions

every 4 wks (28 days) it is taking about a week to recoup-- but then I

feel pretty good for the next 2 1/2 -3 wks.

>

> Remicade has been around for several years-- and 750,000 people are

on it for Rheumatoid Arthritis and Chrons. So it has a good track

record.

>

> You do have to take Methotrexate with it-- so that you don't build

anti-bodies against the Remicade. Also, you must take Folic Acid

daily. This keeps you from developing pernicious anemia. You'll get

a blood test each month, CBC and Liver Function. That way if you are

getting any side effects in the way of lymphoma or leukemia, they can

catch it early and get it under control.

>

> For me, it's been a huge blessing. Huge. The pain in my spine is

no where near what it was-- and I have use of my hands and thumbs. My

thumbs had actually contracted into the palms of my hands, and I

couldn't straighten them out. 1st infusion, and 2 hrs later-- my

thumbs were working. ((Fortunately, I had continued to massage the

muscles and ligaments in them so they could respond). I haven't had

to take any morphine since I've been on the Remicade.

>

> I know Rose, Kim, Darlene and a couple of others have had allergic

reactions-- and I'm sure that Darlenes infection probably stemmed from

the lowered immune system.

>

> Remicade.com has an info #, where you can call and ask questions.

They are going to tell you that they don't have info regarding use of

it for sarcoidosis-- but if you ask about arthritis improvement,

cognitive improvement, etc-- you can get some answers.

>

> Hope this helps, and we'll be seeing it working for you.

> Tracie

> NS co-owner/moderator

>

>

>

>

> ---------------------------------

> Get your own web address for just $1.99/1st yr. We'll help. Yahoo!

Small Business.

>

[Guest guest]

It's great that you can take the remicade. Your benefits from it will help others to have hope that it will work for them. It sounds like you weren't on steroids prior to taking the remicade.

I had taken high doses of prednison starting at 80mg daily and weaning off over 2 1/2 yrs back when I first had pulmonary and ocular sarcoidosis-- 14 yrs ago. I went into remission for about 5 yrs, then it came back-- again in my lungs and eyes.

That has been 6 yrs ago now-- and my pulm ignored that the previous pulm said to never go back on prednisone (too many other problems for me) and so he forced me to go back on it at 60mg a day- and it took 15 mo to get off. In the meantime- the sarc was partying in my brain, spine, joints, muscles bones-- etc.

I finally had to go to Sacramento to UC Med School and get the Rheumi to put me on Imuran, Arava, MTX, Plaquenil, and then I found the clinical trial for Remicade. My insurance didn't want to pay to have me on Remicade-- because it's not FDA approved for sarc yet. However, the pulm fibrosis in my lungs had advanced to stage 4-- and I was on oxygen 24/7. I ended up taking morphine ot control the body and joint pain-- and my personal history with pain meds isn't good. So that wasn't something I wanted to continue to do if there was a way to avoid it.

Because of the diabetes (due to pred) and weight and arthritis and psychosis that pred does to me-- along with depression that it causes- and increased pain-- steroids are a no go for me.

I'm also one who gets on prednisone and my heart rate and blood pressure shoot thru the roof-- and since the sarcs influencing my heart-- no good there either.

My story of the Remicade Trial is in the ARCHIVES-- so you are welcome to view it there.

I can tell you this-- like said-- it's not for everyone. But if you can handle it-- you don't loose your hair, etc-- but you do end up at higher risk of serious infections. So if you get a cold-- get in to see the MD. If you get a yeast infection-- get in-- don't try to "home treat" yourself. If you're around alot of little people-- be careful--- there little cooties are serious business to you.

You just have to use all the common sense stuff- hand washing, not sharing glasses of water, etc-- so that you can stay as healthy as possible.

Once the flu season hits-- I won't be doing the mall and church and large group things. I'll be shopping from home on my puter. It's a trade-off- but at least I can think a bit clearer on most days. My functioning is higher- although no where near where it was prior to sarcoidosis.

I have found that diet, exercise, rest (listen to your body) is the best that I can do. High blood sugar leads to more neuropathy, and fatigue, as well as adds more mental confusion.

If I sit on the couch for a day doing absolutely nothing-- I am going to hurt more the next day. So I do force myself to get up and do some minor exercises even if I have to do them sitting down. (You can march in place sitting in a chair. You can do arm raises, arm curls, swim in place-- all with one pound weights). You have to start where you are--- and if you can only lift those legs (march) 3x with each leg in a day-- that's ok. Start with that. Work up to 5x, then to 7, then- on to reps of 10 or 15 for each leg. You'll be amazed at the difference.

Anyway, that's off topic---- and I'm not sure why I went there. LOL!

Take care,

Tracie

NS Co-owner/moderaotr

[Guest guest]

, I know Tracie has answered you on the Remicade issues you

have, there are those of us that are being managed and maintained on

either methotrexate, plaquinil, Imuran and or cellcept. We either

don't meet the requirements for the remicaide or our hospitals and

doctors haven't caught on to the current consideration with the

remicaide.. There are even a few of the older members that have

taken Cytoxen, which is a powerful chemotherapy drug, that is given

IV just like the Remicade.. Remicade isn't for everyone, although

we hear of it doing good on some of the members here and we all

flock toward it because we all want to be/feel better.

I'm not discouraging you from trying this at all, I'm just merely

stating that their are other options.. and if they actually start

you out on the Remicaide I'll be surprised without trying the other

drugs first.. unless your eyes are involved.

Good luck on whatever they try you on..

Hugs,

>

> Looks like I will be starting Remicade in about 2 weeks. I'm pretty

> nervous. Has anyone looked into Remicade recently.? There is a

website

> from lawyers who are representing patients with bad side effects. I

> know the lawyer site isn't unbiased, yet I wonder. How safe is this

> stuff? I really wish I did not have to take it. Unlike some of you

I

> am currently not very sick. My pattern is that as soon as I get

down

> to a low dose of prednisone then I get VERY sick for 5-6 months,

then

> I'm OK until I taper down, then I get sick again. Prednisone must

now

> be totally out of my future due to it's bad sick effects so I

probably

> don't have a choice here. But I'm scared. How many of you are

taking

> or have taken Remicade? How many have had bad side effects? Thanks

for

> sharing.

>

[Guest guest]

, I'm not starting out on Remicade. It's actually a last resort

for me. I have been on prednisone, on and off, for 6 years. Due to

bone loss, diabetes and high blood pressure, all caused by prednisone,

I need to go off it. They tried IVIG. I have also been on Imuran for a

long time as well. Still, I get sick. So Remicade or Cellcept is all

they can think of to try. One of my neuros has used Remicade with some

success. Because it has more of a track record with saroidosis, and

because it is faster acting, we've opted for that. They really don't

want to use Cytoxen. Like many of you, having to make a decision about

medication vs sickness feels like being backed into a corner. I just

wish I could wake up one day and realize it's all a bad dream.

-

> >

> > Looks like I will be starting Remicade in about 2 weeks. I'm pretty

> > nervous. Has anyone looked into Remicade recently.? There is a

> website

> > from lawyers who are representing patients with bad side effects. I

> > know the lawyer site isn't unbiased, yet I wonder. How safe is this

> > stuff? I really wish I did not have to take it. Unlike some of you

> I

> > am currently not very sick. My pattern is that as soon as I get

> down

> > to a low dose of prednisone then I get VERY sick for 5-6 months,

> then

> > I'm OK until I taper down, then I get sick again. Prednisone must

> now

> > be totally out of my future due to it's bad sick effects so I

> probably

> > don't have a choice here. But I'm scared. How many of you are

> taking

> > or have taken Remicade? How many have had bad side effects? Thanks

> for

> > sharing.

> >

>

[Guest guest]

,Speaking as a nurse and a pt, you have a right to quality care. Ask for someone else to work with you. You don't need to go into this with any worries about whether the nurse will do the job correctly. As for the mtx and folic acid: they must go hand in hand b/c of reduction of side effects. The folic acid prevents mouth ulcers that the mtx can cause...that was the basic I was told about the med by my rheum. Beckywendy_cidp wrote: Thanks for your replies. I feel a bit better now. Hadn't read

anything about having to take methotrexate and folic acid. I'll bring it up with the dr today. I am already taking imuran. Perhaps that will do the same thing? How are people monitored? I have mixed feelings about the nurse I usually get for infusions (I used to get IVIG). She srewed up pretty badly twice before and I am worried about her "monitoring" me. I've been o Remicade for the last 15 months, and prior to that was in a clinical trial where I did get the Remicade. I haven't had any bad side effects. In fact, my experience has been great. > > I was on oxygen 24/7-- and now only have to have it at night or when i'm walking around in higher elevations. It has also helped my cognitive stuff, although I am still having some neuro problems. Most days I can find where I parked my car-- so this is good. (it was a major problem before the Remicade.) > > What I notice is that I have a bit more problem with bouncing back after the infusions, and I get mine every 28 days. > > Initially, they will start you out at the 1st

infusion, 2wks later, a 2nd infusion, then 4 wks after that- a 3rd, then they'll go out to 8 wks. If you find that you don't get thru to 8 wks wo the sarc symptoms coming back- then they can back it down to 6 wk intervals, and back to -as often as 4 wk intervals. > > Some of the people that have tried it have had problems with allergic reactions-- if that happens- it happens quickly during the 1st or 2nd infusion. Generally, taking Benadryl before or with the infusion keeps that problem at bay. > > Some people will have some problems with nausea. I found that if I eat a good meal (breakfast of eggs, etc) that I'm fine. > > After the very first infusion I got-- I had a wonderful all over body flush from it-- and then I was fine. So after a couple of hours hanging around USC-LA infusion center--- I caught a taxi, and my flight home to Sacramento, where my hubby picked me

up. I did sleep for a couple of days afterward-- and now that I get the infusions every 4 wks (28 days) it is taking about a week to recoup-- but then I feel pretty good for the next 2 1/2 -3 wks. > > Remicade has been around for several years-- and 750,000 people are on it for Rheumatoid Arthritis and Chrons. So it has a good track record. > > You do have to take Methotrexate with it-- so that you don't build anti-bodies against the Remicade. Also, you must take Folic Acid daily. This keeps you from developing pernicious anemia. You'll get a blood test each month, CBC and Liver Function. That way if you are getting any side effects in the way of lymphoma or leukemia, they can catch it early and get it under control. > > For me, it's been a huge blessing. Huge. The pain in my spine is no where near what it was-- and I have use of my hands and thumbs. My thumbs

had actually contracted into the palms of my hands, and I couldn't straighten them out. 1st infusion, and 2 hrs later-- my thumbs were working. ((Fortunately, I had continued to massage the muscles and ligaments in them so they could respond). I haven't had to take any morphine since I've been on the Remicade. > > I know Rose, Kim, Darlene and a couple of others have had allergic reactions-- and I'm sure that Darlenes infection probably stemmed from the lowered immune system. > > Remicade.com has an info #, where you can call and ask questions. They are going to tell you that they don't have info regarding use of it for sarcoidosis-- but if you ask about arthritis improvement, cognitive improvement, etc-- you can get some answers. > > Hope this helps, and we'll be seeing it working for you. > Tracie > NS co-owner/moderator > > > > > --------------------------------- > Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small Business. >

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

[Guest guest]

, listen if I was uncomfortable with anyone giving me a

medication like Remicaide, or anything.. I'd say something to the

doctor, or ask for the nurse in charge.. Somebody, I would NOT,

allow her to touch my infusion until I was certain she knew exactly

what she was doing, and yes, I was a NURSE too.. This could be very

costly to you, and that maybe some of your anxiety..

Just a quick story here, I had a hypertensive crisis while at work

in the Emergency Room one day, I ended up in ICU on an IV drip of

NIPRIDE, a very potent antihypertensive drug, I had a nurse come in

and give me a shot of lasix IV, through my Nipride line.. in just a

few, I felt myself going down the tunnel that everyone talks about

when their time has come... I heard the crash of the crash cart, and

when I woke up, and I was being cared for on a ventilator for

awhile, I was scared to death, almost literally.. Needless to say, I

didn't see that nurse at my bedside anymore, but the next morning,

there was another nurse that I had worked with and I knew she

couldn't caculate drips, and I didn't want her messing with mine

after what had just happened the night before. They had already

taken me off the vent when I stabblized.. but sure enough here came

ette...and she was " MY " nurse.. I didn't make a big deal out of

it, but there was " NO WAY IN HELL " she was touching my drip.. I just

asked her, that if something happened like it did the night before

while she was taking care of me, would that not bother her? She

said well of course it would, I said then don't you think it would

be wise to trade me with another nurse? She agreed and out the door

she went..

Now, I'm not telling you this to scare you, I just want you to

know.. that you have the right to say who does and who doesn't

administer your care. You don't have to be ugly, but diplomatic and

just tell them you're uncomfortable with her administering your

meds..I'm sure they've had other's to say the same thing.. Don't

worry about what they do, but just be diligent in who and what

happens to you..

That's my opinion, for what its worth..

I've been o

> Remicade for the last 15 months, and prior to that was in a

clinical

> trial where I did get the Remicade. I haven't had any bad side

> effects. In fact, my experience has been great.

> >

> > I was on oxygen 24/7-- and now only have to have it at night or

> when i'm walking around in higher elevations. It has also helped

my

> cognitive stuff, although I am still having some neuro problems.

Most

> days I can find where I parked my car-- so this is good. (it was a

> major problem before the Remicade.)

> >

> > What I notice is that I have a bit more problem with bouncing

back

> after the infusions, and I get mine every 28 days.

> >

> > Initially, they will start you out at the 1st infusion, 2wks

later,

> a 2nd infusion, then 4 wks after that- a 3rd, then they'll go out

to 8

> wks. If you find that you don't get thru to 8 wks wo the sarc

> symptoms coming back- then they can back it down to 6 wk intervals,

> and back to -as often as 4 wk intervals.

> >

> > Some of the people that have tried it have had problems with

> allergic reactions-- if that happens- it happens quickly during the

> 1st or 2nd infusion. Generally, taking Benadryl before or with the

> infusion keeps that problem at bay.

> >

> > Some people will have some problems with nausea. I found that

if I

> eat a good meal (breakfast of eggs, etc) that I'm fine.

> >

> > After the very first infusion I got-- I had a wonderful all over

> body flush from it-- and then I was fine. So after a couple of

hours

> hanging around USC-LA infusion center--- I caught a taxi, and my

> flight home to Sacramento, where my hubby picked me up. I did

sleep

> for a couple of days afterward-- and now that I get the infusions

> every 4 wks (28 days) it is taking about a week to recoup-- but

then I

> feel pretty good for the next 2 1/2 -3 wks.

> >

> > Remicade has been around for several years-- and 750,000 people

are

> on it for Rheumatoid Arthritis and Chrons. So it has a good track

> record.

> >

> > You do have to take Methotrexate with it-- so that you don't

build

> anti-bodies against the Remicade. Also, you must take Folic Acid

> daily. This keeps you from developing pernicious anemia. You'll

get

> a blood test each month, CBC and Liver Function. That way if you

are

> getting any side effects in the way of lymphoma or leukemia, they

can

> catch it early and get it under control.

> >

> > For me, it's been a huge blessing. Huge. The pain in my spine

is

> no where near what it was-- and I have use of my hands and

thumbs. My

> thumbs had actually contracted into the palms of my hands, and I

> couldn't straighten them out. 1st infusion, and 2 hrs later-- my

> thumbs were working. ((Fortunately, I had continued to massage the

> muscles and ligaments in them so they could respond). I haven't

had

> to take any morphine since I've been on the Remicade.

> >

> > I know Rose, Kim, Darlene and a couple of others have had

allergic

> reactions-- and I'm sure that Darlenes infection probably stemmed

from

> the lowered immune system.

> >

> > Remicade.com has an info #, where you can call and ask

questions.

> They are going to tell you that they don't have info regarding use

of

> it for sarcoidosis-- but if you ask about arthritis improvement,

> cognitive improvement, etc-- you can get some answers.

> >

> > Hope this helps, and we'll be seeing it working for you.

> > Tracie

> > NS co-owner/moderator

> >

> >

> >

> >

> > ---------------------------------

> > Get your own web address for just $1.99/1st yr. We'll help.

Yahoo!

> Small Business.

> >

>

[Guest guest]

Thanks for clearing that up for me.. I thought dang, I wish I

knew where she was so I could have the opportunity to try the

remicaide...

Good luck then , I know we all want to wake up from this

nightmare and get off and rejoin the world..

Hugs,

> > >

> > > Looks like I will be starting Remicade in about 2 weeks. I'm

pretty

> > > nervous. Has anyone looked into Remicade recently.? There is a

> > website

> > > from lawyers who are representing patients with bad side

effects. I

> > > know the lawyer site isn't unbiased, yet I wonder. How safe is

this

> > > stuff? I really wish I did not have to take it. Unlike some of

you

> > I

> > > am currently not very sick. My pattern is that as soon as I

get

> > down

> > > to a low dose of prednisone then I get VERY sick for 5-6

months,

> > then

> > > I'm OK until I taper down, then I get sick again. Prednisone

must

> > now

> > > be totally out of my future due to it's bad sick effects so I

> > probably

> > > don't have a choice here. But I'm scared. How many of you are

> > taking

> > > or have taken Remicade? How many have had bad side effects?

Thanks

> > for

> > > sharing.

> > >

> >

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[Guest guest]

Hi , I just saw my internist, the doctor in charge of my

Remicade treatments. I told her about the nurse stuff. She said she

would arrange to have my treatements done by the oncology nurse, who I

know from personal experience is excellent. Yes, it sometimes pays to

be a " diplomatic " squeeky wheel. I feel much more confident about the

whole process now.

-

I've been o

> > Remicade for the last 15 months, and prior to that was in a

> clinical

> > trial where I did get the Remicade. I haven't had any bad side

> > effects. In fact, my experience has been great.

> > >

> > > I was on oxygen 24/7-- and now only have to have it at night or

> > when i'm walking around in higher elevations. It has also helped

> my

> > cognitive stuff, although I am still having some neuro problems.

> Most

> > days I can find where I parked my car-- so this is good. (it was a

> > major problem before the Remicade.)

> > >

> > > What I notice is that I have a bit more problem with bouncing

> back

> > after the infusions, and I get mine every 28 days.

> > >

> > > Initially, they will start you out at the 1st infusion, 2wks

> later,

> > a 2nd infusion, then 4 wks after that- a 3rd, then they'll go out

> to 8

> > wks. If you find that you don't get thru to 8 wks wo the sarc

> > symptoms coming back- then they can back it down to 6 wk intervals,

> > and back to -as often as 4 wk intervals.

> > >

> > > Some of the people that have tried it have had problems with

> > allergic reactions-- if that happens- it happens quickly during the

> > 1st or 2nd infusion. Generally, taking Benadryl before or with the

> > infusion keeps that problem at bay.

> > >

> > > Some people will have some problems with nausea. I found that

> if I

> > eat a good meal (breakfast of eggs, etc) that I'm fine.

> > >

> > > After the very first infusion I got-- I had a wonderful all over

> > body flush from it-- and then I was fine. So after a couple of

> hours

> > hanging around USC-LA infusion center--- I caught a taxi, and my

> > flight home to Sacramento, where my hubby picked me up. I did

> sleep

> > for a couple of days afterward-- and now that I get the infusions

> > every 4 wks (28 days) it is taking about a week to recoup-- but

> then I

> > feel pretty good for the next 2 1/2 -3 wks.

> > >

> > > Remicade has been around for several years-- and 750,000 people

> are

> > on it for Rheumatoid Arthritis and Chrons. So it has a good track

> > record.

> > >

> > > You do have to take Methotrexate with it-- so that you don't

> build

> > anti-bodies against the Remicade. Also, you must take Folic Acid

> > daily. This keeps you from developing pernicious anemia. You'll

> get

> > a blood test each month, CBC and Liver Function. That way if you

> are

> > getting any side effects in the way of lymphoma or leukemia, they

> can

> > catch it early and get it under control.

> > >

> > > For me, it's been a huge blessing. Huge. The pain in my spine

> is

> > no where near what it was-- and I have use of my hands and

> thumbs. My

> > thumbs had actually contracted into the palms of my hands, and I

> > couldn't straighten them out. 1st infusion, and 2 hrs later-- my

> > thumbs were working. ((Fortunately, I had continued to massage the

> > muscles and ligaments in them so they could respond). I haven't

> had

> > to take any morphine since I've been on the Remicade.

> > >

> > > I know Rose, Kim, Darlene and a couple of others have had

> allergic

> > reactions-- and I'm sure that Darlenes infection probably stemmed

> from

> > the lowered immune system.

> > >

> > > Remicade.com has an info #, where you can call and ask

> questions.

> > They are going to tell you that they don't have info regarding use

> of

> > it for sarcoidosis-- but if you ask about arthritis improvement,

> > cognitive improvement, etc-- you can get some answers.

> > >

> > > Hope this helps, and we'll be seeing it working for you.

> > > Tracie

> > > NS co-owner/moderator

> > >

> > >

> > >

> > >

> > > ---------------------------------

> > > Get your own web address for just $1.99/1st yr. We'll help.

> Yahoo!

> > Small Business.

> > >

> >

>