Can't take remicade any more, because of *RARE* side effects. Anyone else have these Help!!!!

* 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.

Sally

Also wondering if anyone had these RARE side effects when  taking Humira or Certolizumab Pegol injections.

Because my next treatment will either be Humira or Certolizumab and they have the same side effects.

seems that I am hitting a huge brick wall here wiith the Dr's. As  they're pushing these side effects under the rug. As none of the Dr's i've seen since all this started, keep tellling me, that its a VERY RARE side effect. They also do not know of any tests done with these side effects.

But through out all of my 51 years of life, that  with  all of the surgeries i've had on both knees,, left ankle reconstruced, hands, thumbs,  having both  Ulna nerves on my  left and right elbows and the list grows.. lol Thats what i get for being  over working my body, being a landscaper and thinking that my body was indistructable!!!!  

If something had *RARE SIDE EFFECTS*, it would happen to me. It's ;ike I have a Bulls eye on me some where.  lol.

Then deal with the pain in the muscles and nerves, and take what we can to try to at least make the pain some what lesser even if it's for a little while.

Then it's like I have so many good hours in the day, like 4-6, that I have enough energy to get things done. But if I over do it, (which is what i do all the time), i'm wiped out for the next day.

Hugssssssss, vls, I hop0e things go better for you

sally

Thanks for replying,  The sweating happens to me all the time. It used to happen at night, but that was me going through *the Change*. lol. Now it's totally different. I sweat buckets, then I will be chilly and cold. GRRRRRRRRRR..

Heck I bought a new pair of jeans 2 weeks ago, and they're already falling off of my butt. So it's just tighten the belt even more,  I mean I wanted to lose weight, but heck not this way!!!! lol.

No bloating here at all. as far as the cracks on your fingers, I haven't had any with remicade, But always had them in the winter months, as being a florist my hands were always wet. Yep those are painful that is for sure. Forget about it when you hit something against the crack. YIKESSSSSSSSS... just about brings tears to your eyes. 

 Aveeno makes a great Daily Moisturizing Lotion. It's main ingrediant is Natural Colloidial Oatmeal. along with Avena sative (oat) kernal flour. My 12 yr old daughter and I use it all the time. We use it as much as poss, it the colder months.  My daughter has very sensitive skin,  more so in the winter months as her skin gets really dry. She can not use any scented body wash, hand cream etc in the winter time as the scented kinds, have more alcohol which makes the skin even dryer in the winter and makes the dry skin hurt like hell.

Aveeno also makes a a Skin relief shower bath oil. Which is AWESOME!!!!  The way we use it, is to wash yourself first in the shower, then rub the Shower oil everywhere, and let it sit there as long as poss.  with out letting the shower water take it off. Then when you're done with your shower, gently dry your self, so as much of the oil stays on your skin.

Both of these where recommended by my daughters Dr. As the top of her hands in the winter if exposed to the cold etc,  would be swollen, and RED!!! and hot to the touch, and hurr to move them.   By using a cream etc, that the main ingrediant is *NOT* alcohol, will not hurt like heck if your skin is dry and cracked.

All of My dads fingers through out the whole winter, would have deep cracks. every finger. He was a Dairy Farmer. So he was exposed all day long to the winter weather and water.  He would use the old type of white adhesive tape, for wrapping cuts etc.   and wrap  each crack with it. Thats all he ever did, no bandaids or oinments on them.

both of the Aveenos *cream and the oil* are not cheap, like $8 for each, but are well worth it. As it helps the cracks  and dry skin so much. Hope you can try them, and I hope they give you some relief.

They also make a oatmeal bath. They come in packets. Maybe give those a try as well, and just put your hands in the mixture, maybe a couple times a day. Just a thought is all.

Hugsssssss and I hope this helps..

Sally

Thanks for the hugs,  (((Hugs right back to you)))

Man I look at what you've been through and others on here,  and it's like what the hell, I have no right in complaining at all.

Yikes about your skin tearing, that must of hurt.  Least it has stopped.

 It's just frustraiting for  me, as i've always some what sorta been in controll of my body. This is the first time in my life that I am NOT!!!!

 I mean i've abused every joint and my body is full of arthritis,  having been a landscaper  for 35 years and me thinking that I was *Siper Woman* and going past what a body should be put through.   lol .  But I got that from my dad as he was always going past the limit of of his joints etc.  He was a dairy farmer for  64 years. He always told me I never knew enough when to stop. I then would say right back. * And where do you think I got it from*? He then would not have a come back. lol.

if you can find out the name for the new drug, I would appreciate it.

thank you and ((((((HUGS)))))

My pain is not all from  the muscles, it started as nerve pain/damge. First in my fingers on both hands, then went to the plams on both hands. It has now made it so that my muscles are just not there anymore in both hands, fingers and progressed to my wrist,  which has now made both biceps muscles so weak and hurt like heck. Forget about lifting anything over a pound. Just trying to fold abath towel is too heavy to do, as theres is like nothing there

3 weeks ago it started with my nerves in my right foot,  feeling like the foot was asleep, but more instense pain  then if it had fallen asleep. just up to the ankle. then it progressed to my whole calf, but just on the front of it. Now it has also made me lose muscles in the calf. It has made my right  knee, so webble wobble, that I have a hard time walking etc. This is the lnee that I had a total replcacement on in March 2009. That was awesome after the replacement. Now has gotten worse then before I had the surgery.  I know have a dropped ankle/foot. (right)

Which  makes makes it harder to walk, as I am basically dragging my right foot. As all the muscles, tendons, etc just like do not work anymore.

I've been to my Ortho Dr, that did the surgeries this year, but no help there at all. I've been to an RA 2 weeks ago, but again no help there. Last friday I went to a Spine and Neck Dr, and no helo there as well.

No body seems to know what is causing this at all. I am now hoping to get to see a Nuerologist DR, ASAP, because as every day passes it progresses to more areas of my body, and the ones that I already have it in, get more painful, and losing more muscles.

It's like no one has seen this before at all, in either someone with Crohns or someone that doesn't have Crohns. I am getting more frustrated as each day passes and I can do less and less every day.

The Nuerologist Dr, will do the painful nerve tests.They make you feel like your being electrocuted. which i've had like 5 times from previous Ulna  nerve surgeries and carpel tunnel surgeries. So the test has to be done on both arms, and both legs. This I am NOT looking forward to , but if it will help to figure out what the hell is going on, then do the test all they want to.

There are so many things that are running through my head about what it can be. That it is stressing me out BIG time.

Wow, what a roller-coaster ride you've had. So sorry to hear of all of the neurological complications. I hope you do much better with the Humira. I thought I would just mention, if you want an alternative to trying that or one of the other biologic drugs, one other treatment possibility is enteral nutrition. It's the use of a special liquid formula diet for several weeks instead of regular foods to induce remission, or as a supplement to regular foods and beverages to help maintain remission. It can work in some people who don't respond to steroids and has the advantage of being a very safe treatment. Doctors don't often mention it in the US because many people aren't keen on sticking with a liquid diet, even for a few weeks, but it has been tested in many clinical studies and can be quite effective. Just a thought.

Both my GI and PCP agreed it had been Remicade which I had had 10 days prior to the pain beginning.

I have now been on Humira for over 2 years and doing well. Knock on wood!!!!

Best of Luck on your treatment choice!!!