Quoted from a Remicade phamplet
* Nervous System*
"There has been rare cases where people taking Remicade or other TNF blockers have developed disorders that affected their Nervous Sytem. Signs that you could be having a problem include"
"**Changes in your vision**,
Yep I have that!!! Especially for things close up.. Notcied this right away after 2nd treatment I had on Sept. 1st 2009
I had not seen any of these side effects before in anything I read about Remicade. Which was A LOT.
** Weakness in your Arms and/or legs**.
Yep I have this as well. really really bad in my right knee down to my toes/foot.. As I had a total knee replacement March 9th, 2009.
** This also has really affected the surgeries that I had on June 8th 2009. on my right rotator cuff along with my right Bicep muscle put back together. Being that I have COPD, they could not give me the normal nerve block for pain. So I had to stay over night at the hospital.
Well it turns out that someone had over medicated me during the night of June 8th with pain meds. Which caused my Oxygen levels to drop to 59%. They had to give me 2 narcan injections between 6-7 AM on the 9th of June. After the 2nd Narcan injection, I finally came out of the over medication state at l0-11 AM. So now from that over medication someone did. I now have short/long term memory loss, mainly short term. It gets so FRUSTRATING!!!
This over night stay also made so fatigued. that I didn't have the energy to make myself something to eat etc. to give me protien and energy to get better. I just had enough energy to go to the bathroom and also take a shower. I would eat something for supper as my husband would cook when he got home from work. But I needed to eat more and eat better. So for the first 2 weeks of july I went to a friends home in Connecticut to make sure that I ate good meals and get rest. Which helped me so much.
It took me all of July, to some what get me back to being how I was before the over medication. As it really wiped me out. Heck as early as the end of December of last year, I could work 10-15 hours a day, landscaping and being a florist.
I was told that I had Crohns on Aug 9th 2009. after I was brought to the ER by ambulance, as the pain was so bad, that I couldn't even walk. This coming from someone, that really has a HIGH tolerance. Really out of it for the first 10 days in the hospital, due to the pain and being on Morphine and something else for the pain. I honestly have no memory of those first 10 days .
I had my 1st remicade treatment in the Hospital on the 11th day of my stay in the hospital, as the Dr's had given me steroids for the 1st 10 days and they didn't do anything to help get my crohns some what under control.
By the time I got home from the Hospital on August 24th, I had lost 25 lbs, and my muscles etc had gotten me so weak. So I started walking about a 1/2 of mile a day, about 3 times a day. I had NO pain at all in my knee etc. It felt so good to be able to do this. I thought finally I was getting to be my old self again.
But this was short lived as I had my 3rd treament of Remicade Sept 30th, it was all down hill from there. My husband had to call an ambulance to bring me to the ER. I had gone to bed at 7 PM on that night as I was sooooooooooo exhausted. I woke up at 9PM that night, with every piece of my body was screaming in pain. From the tips of my toes to my hair. That no one could touch my skin, it was so painful. My hands and feet were so swollen, and red and I had a 104 temp. I finally got home at 4 am on the Oct 1st. .
BUT since the 3rd treamtment of the Remicade on Sept 30th , my knee that I had the replacement done to, and my right shoulder, bicep muscle that had the surgeries done on are really messed up. and hurt like hell. Which were great until this last treament . As the Remicade Treament on Sept 30th basically attacked my arthirits, ( which is every where in my body)
Then Little by little, first my pinky, ring and middle finger on both hands went numb, and tingily. I have lost my mobility and functions on my hands in these areas. My bicep muscles on both arms(mr right one being worse) and my fingers and hands , have gotten so weak, that I can't even open a Zip Lock bag, I can't turn the key of a car to start it, I can't open jars, cereal bags, do dishes, to cut with a knife heck the list goes on and on.
It has also little by little made my right leg from the knee down to my toes do the same thing (This is the knee I had the replacement on ) They're numb and tingly as well. I can't walk more than 15 minutes at a time, before my foot/leg become like dead weight. That its like I have to drag my foot/leg to walk. If I sit more then 15 minutes in a chair with my legs bent, it gets worse and worse.
Just this week the same thing is happening to my left leg from the knee down.
I've brought this up to my GI Dr, my PC Dr, and the Spine and neck Dr that I saw yesterday.even the RA Dr I saw last week, though it was coming from my neck and back. Which I thought so at 1st, because it made sense.
But now that I read about the Nervous system side effect, I am leaning towards that.
So PLEASE if you have had this *Rare* side effect or know someone who's gone through any of this please let me know. As my Dr said since it's a rare side effect of Remicade, there has not been a good study done on this side effect.
I am making an appt with a Nuerologist (sp) Dr on Monday, and hopefully I can get in there right away...
Sorry is this is long, but I wanted people to know on here, what Has happened to my body ever since the 2nd treatment.