RE: Remicade/Marty

[Guest guest]

Hi, Marty.

Sorry to hear the Remicade did not work out for you, and you had a bad scare

with it. These drugs are so new, and applied to many different medical

conditions, it still risky to use them.

You have to wonder if your bad experience was due to other underlying

medical factors that the Remicade caused to worsen, or you just had a bad

reaction to the drug itself.

I had a lot of blood tests done before my treatments started to rule out

anything that would worsen with Remicade.

My first 2 infusions caused chest pain and pressure, as if someone was

standing on my chest, and this lasted about 5 days. They also caused a

headache, a little dizziness, and an irregular heartbeat. The symptoms

seemed to get worse when they increased the drip rate, so during the 3rd

infusion, we keep the drip rate down, and I did not experience the side

effects I had during the 2 previous infusions. ( Although the hospital food

almost killed me).

My chest pain and pressure may have been due to existing inflammation and

edema, but nobody could say why it happened. My next infusion is at the end

of this month, and I certainly hope it works out ok. I feel so much better

now, I would really be bummed if I had to stop the treatments. I know,

because when I got worse after the 3rd infusion, I was really depressed,

because I thought It had stopped working.

As for the tooth infection that flared up, it was hard to detect compared to

past infections I've had without being on all the meds I'm on now. If it

were not for the toothache ( which was masked for a while by Oxycontin) I

may not have realized I had an infection, and attributed my feeling sick to

Stills. So one has to really pay attention to their bodies, and research

the meds they are on. Because a drug reaction, or infection, can simply

worsen many of one's Stills symptoms, it can be hard to differentiate an

infection or serum sickness from a Stills flare. Especially since many of

our meds suppress our immune systems, and we are very prone to unusual drug

reactions.

Anyway, thanks for sharing your experience. The docs don't warn us of these

things, so we have to warn each other.

-Brent

Remicade

Hello all

After reading a few reports on remicade I thought I would add my two

cents in to it we were on this med for 7 treatments they seamed to work

but very little for me after the first two load up infusions things

happened I got some of the worse headaches of my life I also ended in

the Er room 1-2 times with each treatment (from day one to two weeks)

most of the time it only made my pain worse then thighs would get better

(up to 5 shots morphine or Demerol with nushes med.) I also ended up for

4 days three times first time no one could find out why I hurt so bad

(Have we ever heard that before) the second time they think that I had a

mini stroke all test came back neg(what a surprise) but I had lost most

strength on my left side and had blood pressure of 140+ over 109 with a

pulse of 120 this lasted for two days then after 72 hours we became

stable then home the 3rd time blood presser was 146+over 130+ with pulse

of 133 (need we say more ) in the er room it went to 70+ over 40+ with

pulse of 50+ and dropping fast after 4 days I finely became stable again

sent home Know the rumy has stopped this treat ment as the first two

weeks are to hard for me to take and he was afraid that any more may

cause some real damage now that I'm at the point that I would get a

treatment boy do I feel it but now all I have to take is pain meds tell

I see the rumy and let him know how it went with out the treatment .

Sorry for the longness but had to have my say and if you are using

some of the newer treatments really be aware of how you handle it and do

not do as I did and pass it off hopping that this will be the one that

cures me or puts me into remission as it almost costed me my life and

still's is better then dead as alive I can still hope for a cure if not

for me then for the kids who have never got a shot at life yet thanks

all

Marty Boise ID.