Re: rejecting remicade

[Guest guest]

I have been on remicade for five years. At first I was in complete remission. I could go twelve weeks in between infusions. I recently read that the drug loses efficacy if you go without it for longer than 8 weeks. I have been having a very bad reaction, sort of allergic in nature for almost a year now. I have started on MTX again and it helps a bit, but the flares are back in full strength, even after an infusion, as if I didnt even get the drug. Thats how you know its not working. My body has become smart to meds over time, and they stop working. Until something comes along not TNF based, I doubt I will see relief. I have started on a small dose of arava and that is problematic too. Its seems no matter what I take to stop the allergic reaction, my body becomes just as fatigued as my RA makes me. I have always been one step ahead, but now, I am at the end. Until technology catches up with my "smart" immune system, I am just waiting in hope. I consider myself lucky I have gone as long as I have with Remicade. Until non TNF based biologics come out, Im stuck. Remicade is a remarkable drug though all in all. I must say that. Deborah

[Guest guest]

Hi all:

Just wondering - how do you know if you're rejecting Remicade? Is there

something specific that happens, or do you just not feel any better? I

just went on it myself and am thinking maybe I should be more aware of

things.

gloria

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

From: aclavern33@...

Rheumatoid Arthritis

Sent: Thu, 12 May 2005 22:07:02 EDT

Subject: Re: Re: Humira

All the injectable's have patient support where they send you

sharps containers for free. You call when the one you have is nearly

full and they will send out a replacement. As far as disposal of a full

sharps container, I take them to my doctors office and the nurse places

them with there biohazard stuff for proper disposal. Again this is free

also.

As far as sticking yourself. I can certainly understand that...but I

would much rather stick myself than have IVs placed anywhere!!! I have

terrible venous access..so its always a traumatic experience to get

blood drawn or IVs started. The last time I needed an IV they had to

call a neonate anesthesiologist..and he even had a hard time.

I don;t know what the answers are. I have rejected Enbrel, I refuse to

take humira or remicaide, MTX made me deathly ill and Arava stopped

working. I can't take plaquinel or sulfanizine because of drug

allergies. That leaves one other drug, Kineret and I am not thrilled

with that and daily injections...so right now I am left with No meds at

all...which is fine with me. My old rheummy(the quack) moved away and

my internal med doc is monitoring me right now....There is another

rheummy but he was good friends with the old doc...so I will probably

not see him.

Toni

In a message dated 5/12/05 6:36:28 P.M. Central Daylight Time,

Rheumatoid Arthritis writes:

Date: Thu, 12 May 2005 02:29:18 EDT

From: dbargad@...

Subject: Re: Re: Humira

Hi everyone- I am rejecting the Remicade I am getting. I guess its

becoming

more common. I have a thing about needles and self injecting. There is

also

the bio hazard issue with sharps. If my body is smart to the TNF based

biologicals, would humira work since its based on the same thing? I

live in mortal

fear of my next infusion because it makes me so sick. I am on a small

bit of

arava every other day, and MTX too. I will let everyone know how my

next

remicade goes. Its nice to know I am not the only one having trouble

with

remicade. Thanks everyone for your feedback. Deborah

--------

[Guest guest]

Not all TNF drugs are the same although they all do work on the same component of the immune system. They all work in slightly different ways so one may be effective and the others not effective. Also Kineret is another biologic but it acts on the IL-1 or something like that instead of the TNF. On average it is less effective than the TNF drugs but for some people it is the only one that works. It is a daily injection. God bless.

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

From: dbargad@...

Rheumatoid Arthritis

Sent: Thursday, May 12, 2005 11:49 PM

Subject: Re: rejecting remicade

I have been on remicade for five years. At first I was in complete remission. I could go twelve weeks in between infusions. I recently read that the drug loses efficacy if you go without it for longer than 8 weeks. I have been having a very bad reaction, sort of allergic in nature for almost a year now. I have started on MTX again and it helps a bit, but the flares are back in full strength, even after an infusion, as if I didnt even get the drug. Thats how you know its not working. My body has become smart to meds over time, and they stop working. Until something comes along not TNF based, I doubt I will see relief. I have started on a small dose of arava and that is problematic too. Its seems no matter what I take to stop the allergic reaction, my body becomes just as fatigued as my RA makes me. I have always been one step ahead, but now, I am at the end. Until technology catches up with my "smart! " immune system, I am just waiting in hope. I consider myself lucky I have gone as long as I have with Remicade. Until non TNF based biologics come out, Im stuck. Remicade is a remarkable drug though all in all. I must say that. Deborah

[Guest guest]

People differ greatly in how they reject drugs. Some people get violently ill when the drug is first given, others can get progressively worse reactions with time, and others will just have the drug become less effective with time. Of course, for some they never get any benefit from the drug while others never lose the benefit of the drug. You just have to pay attention to your symptoms and let your doctor know of any changes at each appointment. If things get markedly worse between appointments don't hesitate to call the doctor. God bless.

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

From: gloriarex@...

Rheumatoid Arthritis

Sent: Thursday, May 12, 2005 10:28 PM

Subject: Re: rejecting remicade

Hi all:Just wondering - how do you know if you're rejecting Remicade? Is there something specific that happens, or do you just not feel any better? I just went on it myself and am thinking maybe I should be more aware of things.gloria-----Original Message-----From: aclavern33@...To: Rheumatoid Arthritis Sent: Thu, 12 May 2005 22:07:02 EDTSubject: Re: Re: Humira All the injectable's have patient support where they send you sharps containers for free. You call when the one you have is nearly full and they will send out a replacement. As far as disposal of a full sharps container, I take them to my doctors office and the nurse places them with there biohazard stuff for proper disposal. Again this is free also. As far as sticking yourself. I can certainly understand that...but I would much rather stick myself than have IVs placed anywhere!!! I have terrible venous access..so its always a traumatic experience to get blood drawn or IVs started. The last time I needed an IV they had to call a neonate anesthesiologist..and he even had a hard time. I don;t know what the answers are. I have rejected Enbrel, I refuse to take humira or remicaide, MTX made me deathly ill and Arava stopped working. I can't take plaquinel or sulfanizine because of drug allergies. That leaves one other drug, Kineret and I am not thrilled with that and daily injections...so right now I am left with No meds at all...which is fine with me. My old rheummy(the quack) moved away and my internal med doc is monitoring me right now....There is another rheummy but he was good friends with the old doc...so I will probably not see him.Toni In a message dated 5/12/05 6:36:28 P.M. Central Daylight Time, Rheumatoid Arthritis writes:Date: Thu, 12 May 2005 02:29:18 EDTFrom: dbargad@...Subject: Re: Re: HumiraHi everyone- I am rejecting the Remicade I am getting. I guess its becomingmore common. I have a thing about needles and self injecting. There is alsothe bio hazard issue with sharps. If my body is smart to the TNF basedbiologicals, would humira work since its based on the same thing? I live in mortalfear of my next infusion because it makes me so sick. I am on a small bit ofarava every other day, and MTX too. I will let everyone know how my nextremicade goes. Its nice to know I am not the only one having trouble withremicade. Thanks everyone for your feedback. Deborah--------

[Guest guest]

I was never on remicaide...so I can't answer that question. I refused to take it cause I have such poor venous access. I stopped Enbrel because I started getting bad reactions and it was not working well to begin with...also it was getting very expensive.

Toni

In a message dated 5/13/05 5:17:18 P.M. Central Daylight Time, Rheumatoid Arthritis writes:

Date: Fri, 13 May 2005 01:28:11 -0400 From: gloriarex@...Subject: Re: rejecting remicadeHi all:Just wondering - how do you know if you're rejecting Remicade? Is there something specific that happens, or do you just not feel any better? I just went on it myself and am thinking maybe I should be more aware of things.gloria-----Original Message-----From: aclavern33@...To: Rheumatoid Arthritis Sent: Thu, 12 May 2005 22:07:02 EDTSubject: Re: Re: Humira All the injectable's have patient support where they send you sharps containers for free. You call when the one you have is nearly full and they will send out a replacement. As far as disposal of a full sharps container, I take them to my doctors office and the nurse places them with there biohazard stuff for proper disposal. Again this is free also. As far as sticking yourself. I can certainly understand that...but I would much rather stick myself than have IVs placed anywhere!!! I have terrible venous access..so its always a traumatic experience to get blood drawn or IVs started. The last time I needed an IV they had to call a neonate anesthesiologist..and he even had a hard time. I don;t know what the answers are. I have rejected Enbrel, I refuse to take humira or remicaide, MTX made me deathly ill and Arava stopped working. I can't take plaquinel or sulfanizine because of drug allergies. That leaves one other drug, Kineret and I am not thrilled with that and daily injections...so right now I am left with No meds at all...which is fine with me. My old rheummy(the quack) moved away and my internal med doc is monitoring me right now....There is another rheummy but he was good friends with the old doc...so I will probably not see him.Toni In a message dated 5/12/05 6:36:28 P.M. Central Daylight Time, Rheumatoid Arthritis writes:Date: Thu, 12 May 2005 02:29:18 EDTFrom: dbargad@...Subject: Re: Re: HumiraHi everyone- I am rejecting the Remicade I am getting. I guess its becomingmore common. I have a thing about needles and self injecting. There is alsothe bio hazard issue with sharps. If my body is smart to the TNF basedbiologicals, would humira work since its based on the same thing? I live in mortalfear of my next infusion because it makes me so sick. I am on a small bit ofarava every other day, and MTX too. I will let everyone know how my nextremicade goes. Its nice to know I am not the only one having trouble withremicade. Thanks everyone for your feedback. Deborah

[Guest guest]

I have been on remicade sence 89 and I had jet to have a bad

experance I take it every 4 weeks and it is doing great for me I am

not sure if I would be willing to take the other two meds if they

hurt that much going in I have a low pain intake Sherrie

>

> I was never on remicaide...so I can't answer that question. I

refused to

> take it cause I have such poor venous access. I stopped Enbrel

because I

> started getting bad reactions and it was not working well to begin

with...also it

> was getting very expensive.

>

> Toni

>

> In a message dated 5/13/05 5:17:18 P.M. Central Daylight Time,

> Rheumatoid Arthritis writes:

>

> Date: Fri, 13 May 2005 01:28:11 -0400

> From: gloriarex@a...

> Subject: Re: rejecting remicade

>

>

> Hi all:

>

> Just wondering - how do you know if you're rejecting Remicade? Is

there

> something specific that happens, or do you just not feel any

better? I

> just went on it myself and am thinking maybe I should be more

aware of

> things.

>

> gloria

>

> -----Original Message-----

> From: aclavern33@a...

> Rheumatoid Arthritis

> Sent: Thu, 12 May 2005 22:07:02 EDT

> Subject: Re: Re: Humira

>

> All the injectable's have patient support where they send you

> sharps containers for free. You call when the one you have is

nearly

> full and they will send out a replacement. As far as disposal of

a full

> sharps container, I take them to my doctors office and the nurse

places

> them with there biohazard stuff for proper disposal. Again this

is free

> also.

>

> As far as sticking yourself. I can certainly understand

that...but I

> would much rather stick myself than have IVs placed anywhere!!! I

have

> terrible venous access..so its always a traumatic experience to

get

> blood drawn or IVs started. The last time I needed an IV they had

to

> call a neonate anesthesiologist..and he even had a hard time.

>

> I don;t know what the answers are. I have rejected Enbrel, I

refuse to

> take humira or remicaide, MTX made me deathly ill and Arava

stopped

> working. I can't take plaquinel or sulfanizine because of drug

> allergies. That leaves one other drug, Kineret and I am not

thrilled

> with that and daily injections...so right now I am left with No

meds at

> all...which is fine with me. My old rheummy(the quack) moved away

and

> my internal med doc is monitoring me right now....There is

another

> rheummy but he was good friends with the old doc...so I will

probably

> not see him.

>

> Toni

>

>

> In a message dated 5/12/05 6:36:28 P.M. Central Daylight Time,

> Rheumatoid Arthritis writes:

> Date: Thu, 12 May 2005 02:29:18 EDT

> From: dbargad@a...

> Subject: Re: Re: Humira

>

> Hi everyone- I am rejecting the Remicade I am getting. I guess

its

> becoming

> more common. I have a thing about needles and self injecting.

There is

> also

> the bio hazard issue with sharps. If my body is smart to the TNF

based

> biologicals, would humira work since its based on the same thing?

I

> live in mortal

> fear of my next infusion because it makes me so sick. I am on a

small

> bit of

> arava every other day, and MTX too. I will let everyone know how

my

> next

> remicade goes. Its nice to know I am not the only one having

trouble

> with

> remicade. Thanks everyone for your feedback. Deborah

[Guest guest]

I am current taking nothing for RA. My rheummy is moving away and I need to find another. We only have one other rheummy and I am not sure if he takes my insurance. If not I will have no rheummy. My medical center is searching for one but if it was like the last time it will take 12-24 months to find a new one.

I am a post-op weight loss surgery patient-adjustable gastric band(lapband) ...so my diet is high is protein,low is carbs..and rounded out with veggies. No soda, alcohol, cafferine or things high in sugar. I also have to drink at least 64 ozs of water a day. I had a one year remission immediately after my weight loss surgery which I attribute to change in diet. Now I am not really in remission but dealing with my symptoms.

My old rheummy last month wanted me to start Humira. But its very expensive and I really am not interested in taking any injectables anymore. When I find a new rheummy I will further investigate meds and what options I have. I know there are very few. I have been on so far:Arava, MTX(pills and injections), Enbrel, prednisone, Bextra. I can't take the sulfazine, plaquinil, or celebrex due to drug allergies, nor can I take any of the traditional NSAIDS because of my weight loss surgery and the high incidence of ulcers when on NSAIDS. So I am left with Darvocet for pain, Ambian for sleep and Elivil....plus I still have almost 3 months worth of bextra saved up which I will take sparingly until I can order more from mexico.

Toni

In a message dated 5/16/05 8:50:29 P.M. Central Daylight Time, Rheumatoid Arthritis writes:

Date: Tue, 17 May 2005 00:55:46 -0000 From: "" <catdelouise@...>Subject: Re: rejecting remicadeI am sure you mentioned this, Toni, and I might have even asked you this a while back, but what are you taking for your RA and how are you doing? Are you on any special diet?