Re: Question about Remicade

[Guest guest]

,

I have been on Remicade for 2 years. I am on a high dose but not

the highest - just the highest for my group. I have had pains in my

back and gotten headaches when receiving my infusion but never

enough that I had to complain about them. We have had several

others in our group have reactions too. They are given a benedryl

shot prior to the administration of the remicade and have no problem

receiving the infusion that way.

One reason you could be having a reaction is they have the drip too

open. The times that I have had slight reactions were when the drip

going into my arm was going very fast. It takes almost 4 hours for

my infusion and that is fine with me. My group has been together

now for 2 years and we enjoy getting together once every 2 months

and sitting and talking - there are 3 ahead of me then 2 after me so

it is a good group.

Talk with your rheumy and see about getting the benedryl shot first -

it might help a lot.

God bless,

Althea

[Guest guest]

So sorry to hear all of this, .

Since you were on Remicade several years ago without success and now

you are trying it again (without MTX, I assume), it could be that you

have developed antibodies to Remicade (also known as ATI = antibodies to

infliximab) which make a hypersensitivity reaction more likely.

The main reason MTX is used with Remicade is to keep your body from

producing anti-Remicade antibodies. Are you on any other DMARD right

now (which might help prevent antibody formation)? Or did they

premedicate you with anything prior to the infusion?

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Question about Remicade

>

>

> Some of you know me, but there are many new members here now so I

> will reintroduce myself. I live in Central Oregon (Prineville)and

> have had RA for 17 1/2 years, I am 54 years old (sounds older when

> you write it). I started out on plaquinel after the first year of

> not moving to well and being told my RA factor was as high as it

> could get. Since then I have been on Gold Shots (didn't notice a

> difference), Methotrexate (which worked well for some time and then

> started backing off, but worked with some of the other meds until I

> had a lung problem). I have tried Remicade, Enbrel, Kineret, Humira,

> Arava (twice) Sulfazaladine, I think you get the idea. My new rhuemy

> ( I really like him) put me on Remicade again acouple of weeks ago, I

> had already had 5 infusions a few years back that didn't do any good,

> but he was suprised that a high dose wasn't tried so that was the

> plan. Had my first infusion on Nov. 17th, had no problem, went back

> to see him on the first and then had an appointment directly after

> for my 2nd infusion, he thought he could see some improvement in my

> wrists, so headed on to the Infusion. They had just started the

> infusion and my hips and lower back started aching, thinking if I

> stood up it would go away I stood up and had to sit down again

> because I wasn't very stable, the weird pain went right up my back

> and neck and gave me a head ache. This went away when they turned

> the machine off. My rhuemy came in and checked me, he said he didn't

> think it was the Remicade so they started it again, it wasn't long

> till I was wheezing so they stopped the infusion and gave me meds to

> stop the reaction.

>

> Has anyone ever had a weird pain like that with their remicade

> infusions? I have never had allergic reactions to the meds, before.

> This was really strange. I am not sure what is left for me, I guess

> I will find out Monday.

>

> He also suspects I have fibromialga (sp?) and I have type 2 diabetes,

> which is under control now, Thank God! I feel like a drug store

> sometimes. I guess I should be glad that there are those drugs!

>

> Thanks for listening, from Central Oregon

[Guest guest]

,

I didn't have what happened to you. But I did go into a pancreatic

attack which lead to having a whipple. I have just found out after four

years that it was probably the remicade that started my whole problem. I

had, had an infusion and three days later took the first attack. I was in

the hospital about 20 times. It has been a very hard road to travel, now I

am left with major eating problems. I am telling you this just so you know

to be careful. Remicade was helping me but I can't take another chance

with it. Just be careful with side effects.

Lynn MeMom

grannyfellx6 wrote:

> Some of you know me, but there are many new members here now so I

> will reintroduce myself. I live in Central Oregon (Prineville)and

> have had RA for 17 1/2 years, I am 54 years old (sounds older when

> you write it). I started out on plaquinel after the first year of

> not moving to well and being told my RA factor was as high as it

> could get. Since then I have been on Gold Shots (didn't notice a

> difference), Methotrexate (which worked well for some time and then

> started backing off, but worked with some of the other meds until I

> had a lung problem). I have tried Remicade, Enbrel, Kineret, Humira,

> Arava (twice) Sulfazaladine, I think you get the idea. My new rhuemy

> ( I really like him) put me on Remicade again acouple of weeks ago, I

> had already had 5 infusions a few years back that didn't do any good,

> but he was suprised that a high dose wasn't tried so that was the

> plan. Had my first infusion on Nov. 17th, had no problem, went back

> to see him on the first and then had an appointment directly after

> for my 2nd infusion, he thought he could see some improvement in my

> wrists, so headed on to the Infusion. They had just started the

> infusion and my hips and lower back started aching, thinking if I

> stood up it would go away I stood up and had to sit down again

> because I wasn't very stable, the weird pain went right up my back

> and neck and gave me a head ache. This went away when they turned

> the machine off. My rhuemy came in and checked me, he said he didn't

> think it was the Remicade so they started it again, it wasn't long

> till I was wheezing so they stopped the infusion and gave me meds to

> stop the reaction.

>

> Has anyone ever had a weird pain like that with their remicade

> infusions? I have never had allergic reactions to the meds, before.

> This was really strange. I am not sure what is left for me, I guess

> I will find out Monday.

>

> He also suspects I have fibromialga (sp?) and I have type 2 diabetes,

> which is under control now, Thank God! I feel like a drug store

> sometimes. I guess I should be glad that there are those drugs!

>

> Thanks for listening, from Central Oregon

>

>

>

[Guest guest]

, I can feel for you. My situation sounds like it is heading

down the same road as you. I was on Remicade from November of last

year until July of this year. In February, I went up on my dose to

1300mg every 4 weeks. To keep the side effects down, they had me

take benadryl (or zyrtec) and tylenol. But, I found that, though

they helped, when I wasn't taking steroids, I had awful side

effects. Similar to yours. So, If I wasn't taking prednisone, they

would give me a loading dose of solu-medrol through the IV. Also,

they may be infusing it too fast. When you feel those symptoms

hitting you (even just an inkeling) tell them. They should slow it

down. Good luck with and I hope you get some relief from

it...Marina in Oh

>

> Some of you know me, but there are many new members here now so I

> will reintroduce myself. I live in Central Oregon (Prineville)and

> have had RA for 17 1/2 years, I am 54 years old (sounds older when

> you write it). I started out on plaquinel after the first year of

> not moving to well and being told my RA factor was as high as it

> could get. Since then I have been on Gold Shots (didn't notice a

> difference), Methotrexate (which worked well for some time and

then

> started backing off, but worked with some of the other meds until

I

> had a lung problem). I have tried Remicade, Enbrel, Kineret,

Humira,

> Arava (twice) Sulfazaladine, I think you get the idea. My new

rhuemy

> ( I really like him) put me on Remicade again acouple of weeks

ago, I

> had already had 5 infusions a few years back that didn't do any

good,

> but he was suprised that a high dose wasn't tried so that was the

> plan. Had my first infusion on Nov. 17th, had no problem, went

back

> to see him on the first and then had an appointment directly after

> for my 2nd infusion, he thought he could see some improvement in

my

> wrists, so headed on to the Infusion. They had just started the

> infusion and my hips and lower back started aching, thinking if I

> stood up it would go away I stood up and had to sit down again

> because I wasn't very stable, the weird pain went right up my back

> and neck and gave me a head ache. This went away when they

turned

> the machine off. My rhuemy came in and checked me, he said he

didn't

> think it was the Remicade so they started it again, it wasn't long

> till I was wheezing so they stopped the infusion and gave me meds

to

> stop the reaction.

>

> Has anyone ever had a weird pain like that with their remicade

> infusions? I have never had allergic reactions to the meds,

before.

> This was really strange. I am not sure what is left for me, I

guess

> I will find out Monday.

>

> He also suspects I have fibromialga (sp?) and I have type 2

diabetes,

> which is under control now, Thank God! I feel like a drug store

> sometimes. I guess I should be glad that there are those drugs!

>

> Thanks for listening, from Central Oregon

[Guest guest]

Hi Terri -

I've had high liver enzymes as well, off and on, and when I got diagnosed with R.A. and diabetes, they also said I had liver disease, my liver was chronically inflamed for whatever reason. They said if I took Imuran that in five years it would go away - it is already subsided and they say my liver is fine now. So I got rid of one disease at least for now - but its weird how the enzymes go up and down - that's why they couldn't put me on methotrexate as it is hard on your liver - so I take Imuran - which is a very old med - on top of my Humira.

I also have hypothyroidism and have for years - I also had pain in my lower R-H side - so interesting - they said for 10 years it was IBS (irritable bowel syndrome) - then after much pain and insisting they open me up - I was told I had PID (pelvic inflammatory disease) - all my organs were stuck together with scar tissue - so they removed that - I sort of wonder sometimes if that would have been caught sooner - if all my troubles now would not have occurred. I've heard that folks with IBS, colitis etc - are prone to R.A. Needless to say, even after surgery and they said my fallopian tubes were not blocked any longer, and that I could have kids (75% chance) - I was told a few years later I was menopausal at age 34 - so I've never been able to have my family - which was always a dream of mine.

slidin1313 <slidin2astop@...> wrote:

I was diagnosed in June 04 with RA. They started me immediately on methatrexate, prednisone and folic acid and sent me to a specialist. The doctor got me approved and I started taking Remicade infusions in November 04. I have had a great amount of relief from the swelling and pain after about the 4th treatment. They now last at least 6 weeks to 7 weeks before the pain comes back and I know it is time for another treatment.Now for the questions, since starting on the remicade I have had two cysts come up on my thyroid and had to have the thyroid removed due to the cyst causing breathing and swallowing problems. This surgery was done in May 05. Now they have sent me back to the general surgeon because of pains in the upper abdominal on the right side. He is sending me for a ultrasound on my

gallbladder on Tuesday. I was taken off prednisone about 3 months ago and have had my methatrexate reduced to 3 pills a week due to high liver enzymes. It took 4 months to get the enzymes back to normal. Has anyone else seemed to have any problems like this?ThanksTeri__________________________________________________

[Guest guest]

----- Original Message -----

From: slidin1313

> Now they have sent me back to the general surgeon because of pains in the upper abdominal on the right side. He is sending me for a ultrasound on my gallbladder on Tuesday. I was taken off prednisone about 3 months ago and have had my methatrexate reduced to 3 pills a week due to high liver enzymes. It took 4 months to get the enzymes back to normal. Has anyone else seemed to have any problems like this?

It's called upper right quadrant pain and it may be from your liver. Your liver itself does not have the nerve endings to feel pain, but it has a covering that does. I have PBC (primary biliary cirrhosis) which is an autoimmune disease that destroys the bile ducts (it was the first AI disease I was diagnosed with and what prevents me from getting insurance).

I know what you mean about the pain. So if it doesn't turn out to be your gallbladder (which the pain from gallbladder often appears elsewhere, like in your chest or shoulder), it is probably your liver. They may want to do a biopsy of your liver. What are your liver numbers? This is why no one will give me methotrexate.

Nina

[Guest guest]

I haven't had or heard of those particular problems but there are some rare bad side effects of most medications. I think it could be medication-related or due to something else entirely. God bless.

----- Original Message -----

From: slidin1313

Rheumatoid Arthritis

Sent: Friday, July 29, 2005 10:46 AM

Subject: Question about Remicade

I was diagnosed in June 04 with RA. They started me immediately on methatrexate, prednisone and folic acid and sent me to a specialist. The doctor got me approved and I started taking Remicade infusions in November 04. I have had a great amount of relief from the swelling and pain after about the 4th treatment. They now last at least 6 weeks to 7 weeks before the pain comes back and I know it is time for another treatment.Now for the questions, since starting on the remicade I have had two cysts come up on my thyroid and had to have the thyroid removed due to the cyst causing breathing and swallowing problems. This surgery was done in May 05. Now they have sent me back to the general surgeon because of pains in the upper abdominal on the right side. He is sending me for a ultrasound on my gallbladder on Tuesday. I was taken off prednisone about 3 months ago and have had my methatrexate reduced to 3 pills a week due to high liver enzymes. It took 4 months to get the enzymes back to normal. Has anyone else seemed to have any problems like this?ThanksTeri

[Guest guest]

Hi,

I have not had the problem with the cysts or other things like that but I have had high liver enzymes. Mine are ok now but then I was off all my medications for about a month. I am now back on the Methotrexate, Lucovor CA, and Humeria so I am sure it will go back up. Almost all medications does things to your liver because the liver takes it all in. Anything that goes into the body goes through the liver so you can expect them to be high but need to be closely watched. If your doctor is a good one he will have your liver functions checked out at least once a month.

May God Bless You.

Kat

..

..

..

-------Original Message-------

From: slidin1313

Date: 07/29/05 12:47:20

Rheumatoid Arthritis

Subject: Question about Remicade

I was diagnosed in June 04 with RA. They started me immediately on methatrexate, prednisone and folic acid and sent me to a specialist. The doctor got me approved and I started taking Remicade infusions in November 04. I have had a great amount of relief from the swelling and pain after about the 4th treatment. They now last at least 6 weeks to 7 weeks before the pain comes back and I know it is time for another treatment.Now for the questions, since starting on the remicade I have had two cysts come up on my thyroid and had to have the thyroid removed due to the cyst causing breathing and swallowing problems. This surgery was done in May 05. Now they have sent me back to the general surgeon because of pains in the upper abdominal on the right side. He is sending me for a ultrasound on my gallbladder on Tuesday. I was taken off prednisone about 3 months ago and have had my methatrexate reduced to 3 pills a week due to high liver enzymes. It took 4 months to get the enzymes back to normal. Has anyone else seemed to have any problems like this?ThanksTeri

[Guest guest]

----- Original Message ----- From: KATHY SHIRLENE LEVERETT -BAKER

> Anything that goes into the body goes through the liver so you can expect them to be high but need to be closely watched.

Everything you take into your body goes through either your liver or your kidneys.

Nina

[Guest guest]

Tess,

Thank you for you quick reply and words of wisdom. I

guess I'll try Remicade. Something has got to work.

Sue

--- Grammi B <grammi_love@...> wrote:

> I think it is a YMMV (Your Mileage Might Vary)

> situation...Remicade works better for some, Humira

> better for others. I was on Remicade and it worked

> really well at first...then I began having some

> slight reactions during the infusions and it worked

> for less and less time. Then I contracted a

> stubborn pneumonia, had to go off of Remicade. Then

> I started on Humira going on 2 years ago...so far it

> has worked well with no adverse side effects. I

> must say, though, that I have been wondering lately

> if it is losing it's potency with me as I have in

> been a stubborn flare. Time will tell.

>

> Welcome to this great group of folks, and I wish you

> all the best on this challenging journey.

>

> Tess in Oregon

>

>

> [Non-text portions of this message have been

> removed]

>

>

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