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

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contrymom
Regular Member


Date Joined Oct 2009
Total Posts : 39
   Posted 10/31/2009 7:17 AM (GMT -7)   
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.
 
Sally
 
 
 
Sally from Milton NH.   
Prevcid  DR   (1)  30mg  tablet every morning 
Potassium CL ER  (1) 20mg in the morning 
Ascecol EC  (4) 40mg tablets 3 X a day 
Pomrthazine  (1) 12.5 mg  when needed for a quesy stomach which is basically 3 times a day. 
Dicyclomine (1) 20 mg tablet 3X a day 
Oxycodone  (1) 30mg tablet every 4-6 hours.  
Vicodone  APAP (2-3) 7.5-750 At  bed time  
Steroids do not work for my Crohns at all
 
 
 
 


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 10/31/2009 8:50 AM (GMT -7)   
I wish you all the best with you're neuro. I reacted to Remi, but mine was anaphylactic, which is reasonably common.
Sorry can't help with your reactions. They sound awful.
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis and lupus.
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts...


contrymom
Regular Member


Date Joined Oct 2009
Total Posts : 39
   Posted 10/31/2009 9:34 AM (GMT -7)   
Thank you Vicki for the reply.  I'm just hoping that someone here on the Forums, or if someone knows someone with these side effects, Will let me know.
 
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.
Sally from Milton NH.   
Prevcid  DR   (1)  30mg  tablet every morning 
Potassium CL ER  (1) 20mg in the morning 
Ascecol EC  (4) 40mg tablets 3 X a day 
Pomrthazine  (1) 12.5 mg  when needed for a quesy stomach which is basically 3 times a day. 
Dicyclomine (1) 20 mg tablet 3X a day 
Oxycodone  (1) 30mg tablet every 4-6 hours.  
Vicodone  APAP (2-3) 7.5-750 At  bed time  
Steroids do not work for my Crohns at all
 
 
 
 


vls
Regular Member


Date Joined May 2005
Total Posts : 166
   Posted 10/31/2009 1:28 PM (GMT -7)   
  • Sounds like what I have with Cimzia.  The pain in my leg muscles and my feet are unbelievable.  I had the vision issues with remicade also, which scared me away from Humira but now I have no choice as the disease has taken over, I had to go on cimzia.  It really has helped the Crohn's but I guess a life without pain is too much to hope for.  My legs are killing me 24/7

diagnosed 13 days following an MMR vaccination at the age of 44
tried Colazal, Pentasa, Immuran, Remicade, Prednisone, Cipro, Flagyl, LDN, Osiris clinical study,  accupuncture, began Cimzia 5/2009


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 10/31/2009 7:06 PM (GMT -7)   
here are my strange side effects..i have had extreme sweating..enough to lose at least five pounds..this lasted for days..and then it went away..i have also had bloating...which seemed to get a little bit better..also pin point red dots on my skin..i still get this..and they dry up like blisters but never hurt...today i had a headache and blurry vision and i almost passed out..but i am taking tylenol with codeine..so this might be the culprit..i am also very hyper..with Remicade..not sure why...i have always had trouble opening stuff..but i have some joint pain..now this is the weirdest part..very close to getting my next infusion..i will get like several cracks..in my skin on each finger..enough that it throbs and keeps me up at night..on my feet also..and i put lots of bandaids...and take pain killers...it always comes..closet to the next infusion...

 Crohn's Lupus Hyperthyroid..Pentasa Remicade Fistula removed..skin tag removed!

 


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 10/31/2009 10:53 PM (GMT -7)   
Sally, I have crohn's and flared worse and worse for years. I had reactions to remicade too. I couldn't walk up the stairs, I hurt all over. I had all the hand and feet problems you talked about.

It was after the third injection of remicade that I got red spots on my legs and they had me go directly to a dermatologist. He biopsied a spot and it was a reaction to the medicine. So I quit that stuff and was scared to Humira because it was so similar. I went in another study at the University hospital here instead. Abesept or something like that. It helped a little but not enough to keep on it. Then I was getting ready to go in a stem cell transplant study when they found cancer cells and I had surgery instead.

Recovery has seemed long and frustrating but no more frantically looking for bathrooms everywhere I go.

I hope you find something that works for you. there are many different ones these days. Good luck.
This heights by great men reached and kept, were not obtained by sudden flight, but they while their companions slept, were toiling upward in the night.
H.W. Longfellow
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
Trying


contrymom
Regular Member


Date Joined Oct 2009
Total Posts : 39
   Posted 11/1/2009 9:06 AM (GMT -7)   
Thank you for replying vls,   yep thats why i'm afraid of Humira etc, but it's like one has no choice, it's either take something for the Crohns to try and keep it  in check some what sorta.
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
 
 
Sally from Milton NH.   
Prevcid  DR   (1)  30mg  tablet every morning 
Potassium CL ER  (1) 20mg in the morning 
Ascecol EC  (4) 40mg tablets 3 X a day 
Pomrthazine  (1) 12.5 mg  when needed for a quesy stomach which is basically 3 times a day. 
Dicyclomine (1) 20 mg tablet 3X a day 
Oxycodone  (1) 30mg tablet every 4-6 hours.  
Vicodone  APAP (2-3) 7.5-750 At  bed time  
Steroids do not work for my Crohns at all
 
 
 
 


MissCris
Regular Member


Date Joined Jun 2006
Total Posts : 321
   Posted 11/1/2009 9:12 AM (GMT -7)   
Contrymom- I'm so sorry that you are going through this right now =\ (((huge hugs))) I didn't have any really bad reactions to Remicade and I haven't been on the other meds but hopefully you won't have a reaction when you start something new. I wish they could just figure all of this out and get a cure already. My nurse mentioned that there is a new medication that may be an option for me if the Cimzia fails. Something with a D...I'll ask her about it when I talk to her again. The good news is that they are constantly figuring out new meds so I figure we just have to survive until there is a cure :D Hang in there!!!

Frogeleita- I also had weird skin things with the Remicade...nothing major but I noticed that I would get "skinned" super easy. For example, one day while driving to the VA for my infusion, I opened a water bottle and it tore the skin from the inside of my finger. Any time I would bump into something, my skin would tear. The nurses weren't really sure if it was because of the Remicade and it wasn't anything really serious but it stopped once I stopped the Remicade. I guess it weakened my skin for some reason.

VLS- I'm sorry to hear that you are always in pain =\ I am on Cimzia now and whenever they give it to me I get really bad cramping for the first day. It usually only lasts about 6-12 hours and then I'm fine until the next treatment. I've also found that the pain changes depending on where they give it to me. When I get it in my lower back (almost my butt), I don't really have a lot of cramping and what I do is mostly just in my lower back. I decided to get it in my sides again last week and I had terrible stomach and back pain for the rest of the day. It's a delayed reaction though, it doesn't usually start until about 4 hours later. Do you get your shots in your legs? Maybe the location has something to do with your pain.

Hope everyone starts feeling better!!!! <3
"Be ashamed to die until you have won some victory for humanity" ~ Horace Mann


contrymom
Regular Member


Date Joined Oct 2009
Total Posts : 39
   Posted 11/1/2009 9:35 AM (GMT -7)   
Hi Frogeleita,
 
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
 
Sally from Milton NH.   
Prevcid  DR   (1)  30mg  tablet every morning 
Potassium CL ER  (1) 20mg in the morning 
Ascecol EC  (4) 40mg tablets 3 X a day 
Pomrthazine  (1) 12.5 mg  when needed for a quesy stomach which is basically 3 times a day. 
Dicyclomine (1) 20 mg tablet 3X a day 
Oxycodone  (1) 30mg tablet every 4-6 hours.  
Vicodone  APAP (2-3) 7.5-750 At  bed time  
Steroids do not work for my Crohns at all
 
 
 
 


contrymom
Regular Member


Date Joined Oct 2009
Total Posts : 39
   Posted 11/1/2009 9:45 AM (GMT -7)   
Good Morning Trigirl, 
 
Sorry that you had the same reactions, but least i'm not the only one. Thought maybe I was going crazy. Yep like you I am scared to try  the other 2, I mentioned for Crohns, but heck somethings got to work. Dang It!!!!
 
so far no red spots, but I did  get like hives I guess, on the upper part of my chest, my neck, my face and lesser on my arms and legs. I had that with in a couple days after the 3rd treatment of remicade, but they went away that night.
 
i'm sorry about the cancer. Hope all is well with that. My thoughts and prayers are headed your way.
 
This Crohns just plain sucks monkey butt!!!!. I mean i've been through a whole mess of surgeries, 3 natural child births etc. But this is by far the worst i've ever had. But I keep telling myself that it can always be worse.
 
Hugsssssss for you
 
Sally
Sally from Milton NH.   
Prevcid  DR   (1)  30mg  tablet every morning 
Potassium CL ER  (1) 20mg in the morning 
Ascecol EC  (4) 40mg tablets 3 X a day 
Pomrthazine  (1) 12.5 mg  when needed for a quesy stomach which is basically 3 times a day. 
Dicyclomine (1) 20 mg tablet 3X a day 
Oxycodone  (1) 30mg tablet every 4-6 hours.  
Vicodone  APAP (2-3) 7.5-750 At  bed time  
Steroids do not work for my Crohns at all
 
 
 
 


contrymom
Regular Member


Date Joined Oct 2009
Total Posts : 39
   Posted 11/1/2009 10:01 AM (GMT -7)   
Hi Miss Cris,
 
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)))))
 
 
Sally from Milton NH.   
Prevcid  DR   (1)  30mg  tablet every morning 
Potassium CL ER  (1) 20mg in the morning 
Ascecol EC  (4) 40mg tablets 3 X a day 
Pomrthazine  (1) 12.5 mg  when needed for a quesy stomach which is basically 3 times a day. 
Dicyclomine (1) 20 mg tablet 3X a day 
Oxycodone  (1) 30mg tablet every 4-6 hours.  
Vicodone  APAP (2-3) 7.5-750 At  bed time  
Steroids do not work for my Crohns at all
 
 
 
 


vls
Regular Member


Date Joined May 2005
Total Posts : 166
   Posted 11/2/2009 3:50 AM (GMT -7)   
I have always been getting one shot in the thigh and one in the stomach, but both my legs hurt. I just got shot up yesterday and had them both in my stomach this time, so I'll see it that makes a difference. I soak twice a day in epson salts and use Biofreeze all over along with Tramadol and Tylenol. My feet feel like nerves are firing irratically all through them, they just really hurt
diagnosed 13 days following an MMR vaccination at the age of 44
tried Colazal, Pentasa, Immuran, Remicade, Prednisone, Cipro, Flagyl, LDN, Osiris clinical study,  accupuncture, began Cimzia 5/2009


contrymom
Regular Member


Date Joined Oct 2009
Total Posts : 39
   Posted 11/2/2009 7:56 AM (GMT -7)   
Hi vls,
 
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.
Sally from Milton NH.   
Prevcid  DR   (1)  30mg  tablet every morning 
Potassium CL ER  (1) 20mg in the morning 
Ascecol EC  (4) 40mg tablets 3 X a day 
Pomrthazine  (1) 12.5 mg  when needed for a quesy stomach which is basically 3 times a day. 
Dicyclomine (1) 20 mg tablet 3X a day 
Oxycodone  (1) 30mg tablet every 4-6 hours.  
Vicodone  APAP (2-3) 7.5-750 At  bed time  
Steroids do not work for my Crohns at all
 
 
 
 


tamsprote96
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 11/2/2009 8:33 AM (GMT -7)   
I've been on Humira since May 09 and havent had bad side effects. I also havent seen a lot of improvement so I was thinking about changing to remicade. I am tired of feeling so crappy!

contrymom
Regular Member


Date Joined Oct 2009
Total Posts : 39
   Posted 11/2/2009 9:27 AM (GMT -7)   
I hope Remicade works for you, It had been working for me, right after the 1st treament when I was in the hospital in August of 2009. Thats when I was told that I had Crohns.

The 2nd treatment on Sept 1st 2009, worked as well, It was the 3rd treament that started raising havock with my arthritis etc.. and the rest of my body.The 3rd treament was on Spet 30th. and its's been down hill since then

So I will be starting Humira this month.
Sally from Milton NH.   
Prevcid  DR   (1)  30mg  tablet every morning 
Potassium CL ER  (1) 20mg in the morning 
Ascecol EC  (4) 40mg tablets 3 X a day 
Pomrthazine  (1) 12.5 mg  when needed for a quesy stomach which is basically 3 times a day. 
Dicyclomine (1) 20 mg tablet 3X a day 
Oxycodone  (1) 30mg tablet every 4-6 hours.  
Vicodone  APAP (2-3) 7.5-750 At  bed time  
Steroids do not work for my Crohns at all
 
 
 
 


Jenn4dex
Regular Member


Date Joined Mar 2006
Total Posts : 494
   Posted 11/2/2009 10:02 AM (GMT -7)   
I had to go off of it as well, I have breast implants and it started making them crazy painful and my surgeon said the meds were making my body reject them!!! So about 6 months ago, they tried Humira and that took longer, but after 4-5 months, same thing started happening. I haven't been back to the doctor since stopping humira....I was planning a wedding and got married now back from my honeymoon and getting much sicker....not sure what to do next.
Jennifer
Diagnosed Crohns 1/06
CD of Terminal Ileum
Taking Pentasa. Adverse reactions to Remicade. Also take Forteo Injections, Actonel, Calcium and Vitamin D, B12 injections.


contrymom
Regular Member


Date Joined Oct 2009
Total Posts : 39
   Posted 11/2/2009 11:22 AM (GMT -7)   
Jennifer,


First off CONGRATULATIONS !!!!!!!!!!!!!! on getting married. Wishing years and years of happiness.....

There is another injection besides Remicade or Humira. Ummm it starts with the letter C.
But I can't remember how to spell it, and the info I had on it, gone thrown away. sorry.


but ask your Dr, they will know what it is....
Wishing you good luck on finding the right treatment for you..


Sally
Sally from Milton NH.   
Prevcid  DR   (1)  30mg  tablet every morning 
Potassium CL ER  (1) 20mg in the morning 
Ascecol EC  (4) 40mg tablets 3 X a day 
Pomrthazine  (1) 12.5 mg  when needed for a quesy stomach which is basically 3 times a day. 
Dicyclomine (1) 20 mg tablet 3X a day 
Oxycodone  (1) 30mg tablet every 4-6 hours.  
Vicodone  APAP (2-3) 7.5-750 At  bed time  
Steroids do not work for my Crohns at all
 
 
 
 


tamsprote96
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 11/2/2009 11:25 AM (GMT -7)   
I think you are thinking about Cimzia. I have a friend that was on it but she didnt like the side effects so she went on Humira.

Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 11/2/2009 7:17 PM (GMT -7)   
Sally,
 
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.

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5856
   Posted 11/5/2009 8:16 PM (GMT -7)   
     What liquid diet is that?  I have ulcerative proctitis and am prednisone dependent.  Seems like every time I taper off..wham...another flare a month or so later.  Terrible urgency, bleeding too.  I have an appointment with my GI doctor to discuss Remicade on Tuesday.  He has been pushing this for two years but his associate said I am not a candidate for it because in the 60's I tested positive for TB...I don't have it but must have been in contact with it and the doctor thinks it is dormant in my system and Remicade could activate it.  Now why would two doctors in the same practice not agree on something that important?  Right now my quality of life sucks....no bowel control, urgency, bleeding.  I am game for anything.
 
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008 for ten days.
Remission Nov 08 thru May of 09.
Slowly coming out of flare.  Meds: Colazal (6 per day), prednisone 10 mgm and tapering weekly, Cort enema nightly, Canasa in morning, Benicar 20 mg for BP, flaxseed oil 3 x a day, fishoil 2 x a day, probiotic 3 x a day, calcium with D 1x a day and multivitamin.
Doctor had me on 100 mgm of 6MP which drastically lowered my white count.  Now off the 6MP pending results of repeat white count. UGH.


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 11/6/2009 8:58 AM (GMT -7)   
Christine, there are a variety of liquid formulas that are used that are grouped together under the rubric of "enteral nutrition." It's a treatment that is particularly useful for children with Crohn's, because it can help reverse growth delays caused by the disease, but it can be used by patients of any age to induce remission. Most unfortunately, however, it is only affective as a treatment for Crohn's, and not for ulcerative colitis. It can be worth trying if you have a UC diagnosis, but have had symptoms suggesting the possibility of Crohn's instead (weight loss, for example, or various nutrient deficiencies). But if you have an absolutely clear ulcerative colitis diagnosis, then I'm afraid it won't help much. It's fine to use as a supplement for weight gain, but it doesn't have an anti inflammatory effect the way it does in Crohn's. Sorry!

contrymom
Regular Member


Date Joined Oct 2009
Total Posts : 39
   Posted 11/8/2009 4:45 AM (GMT -7)   
So instead of Humira, the Dr and I are going for Cimzia instead. To me it's whats the BIG DIFF, all of them have the same bad side effects. So lets go for it.

Hugsssssssss to all.

Sally
Sally from Milton NH.   
Prevcid  DR   (1)  30mg   every morning 
Oxycodone  (1) 30mg every 4-6 hrs  Dicyclomine (2) 20 mg 4X's a day  
Vicodone  APAP (2-3) 7.5-750 At  bed time  
Potassium CL ER  (2) 20mg 3 times a day 
Ascecol EC  (4) 40mg 3 X a day,  Dicyclomine (2) 20mg 4X's a day
Pomrthazine  (1) 12.5 mg 2-3 X's a day
Remicade doesn't  like me anymore. Onto Humira
RICE chex's and I have become really really good friends!!!!!!
 
 
 
 
 


dcham1
New Member


Date Joined Jul 2009
Total Posts : 11
   Posted 11/8/2009 1:35 PM (GMT -7)   
When talking to people, I will be having a conversation and when I try to say a word(does not matter what the word night be) , it takes me 6 seconds to get that word out of my mouth. I have never had this problem before, but have noticed that this started while I was taking remicade and it is still happening to this day.
Contact your senators and congressmen to support ANY IBD legislation. We need all the help we can get to combat this disease.


dmd108
New Member


Date Joined Nov 2009
Total Posts : 1
   Posted 11/9/2009 9:38 PM (GMT -7)   
Thankyou.You are not alone. I had my second remicade 2 weeks ago. Have been in hell ever since. I have visual changes a sore throat .my joints have not worked.the ironic thing is I am a nurse/dancer. myGi doc is useless. He is sending me to a rhuematologist. No one has answers as to how long this will last or if it can be reversed. I am supposed to have my third dose in December I would rather live with crohns.
good luck dawn

AKTeach
Regular Member


Date Joined Sep 2005
Total Posts : 83
   Posted 11/12/2009 11:04 AM (GMT -7)   
My remicade reaction started with the feeling of flu, temperature, fatigue, and sore throat.  By the next day I was barely able to move or get out of bed because of the pain in my legs, back, and arms.  I have never had pain like this before and I have osteo arthritis.  After going to the doctor which was quite an exhausting outing, I went to bed for several days, the pain went to every part of my body before subsiding and slowly leaving.
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!!!
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