shaky hands and dropping things!

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

poohbear37
Regular Member


Date Joined Feb 2007
Total Posts : 98
   Posted 11/3/2009 7:30 PM (GMT -6)   
I have been on Cimzia since July, I am thinking this could be a side effect (I am almost hoping this is a side effect so it is not something worse).

I have noticed that my hands are constantly shaking and twitching, especially when I am holding something of doing fine motor tasks. I drop stuff all the time, mostly in the morning. I have numb tingly feelings in my whole body, but mostly on the left side. I am also having really bad headaches and left eye pain. It is so hard to figure out if this is related to the crohns or if it is a side effect of a medicine or something seperate, but it is scary! My doctor wants me to see a neurologist, but he is having a hard time finding one at Mass General for me to see (they havent called him back). I guess I just have to wait, but I feel lik eI am out of luck either way it goes, cimzia was the last med that I hadnt tried and if it is something else like another condition, i can;t handle that too!!!

Anyone else heard of a high correlation between crohns and MS??

My mom passed away three years ago of brain cancer and she had fibromyalgia and my aunt just got diagnosed with ALS, so i have a history of neuro problems...i am scared, and i cant do anything about it!!~
Crohn's Disease - re-diagnosed June 2009
Ulcerative Colitis - diagnosed in 2000

26 years old/female
Asacol, Cymbalta, Nexium, Cimzia

Bad reactions to: remicade, lialda & 6mp


Nebraskagirl
Regular Member


Date Joined Apr 2009
Total Posts : 47
   Posted 11/3/2009 7:57 PM (GMT -6)   
I dont know if this helps but this last yr(STILL trying to find right Dr) My primary put me on predinsone, quit after a month- dont think it was that? But for about 8 months I've noticed I have left arm and hand motor weakness and trembling. I use laptop at work and some days it really noticable or if I have my hands gripped a certain way you can see it tremble bad. It has never went away. But I can feel the strength diffrence between left side and rt. side. Above all follow through seeing Neruo. Dr. or someone.

I hope things get better for you.

PV
Veteran Member


Date Joined May 2006
Total Posts : 1158
   Posted 11/3/2009 8:17 PM (GMT -6)   
I think you need to find a neurologist, and get a spine, neck and brain MRI to see if there are any lesions. Don't let doctors jerk you around, hound them until they give you an appointment. I am not sure about a link between Crohn's and MS, but I know that some people believe MS to be another auto-immune condition, and they say that people with 1 autoimmune disease may sometimes also get another autoimmune condition. Also, anti-tnf agents like Remicade, Humira and Cimzia can all also affect the peripheral and central nervous system, and can cause a MS like syndrome, which usually goes away after stopping treatment.

Get an MRI soon. It'll give you peace of mind. And if there are lesions, then, you know that you have to stop the Cimzia right away.

Hang in there. I know the anxiety is probably getting to you, but hopefully the docs will figure it out, and you'll get better. My husband developed drop foot right after starting the remicade, and I know how anxious I was when he was being seen by a neurologist to make sure it isn't MS. I'm so sorry you're going through this right now.

Also, have you checked for anemia and B12 etc? Sometimes this kind of weakness, and even numbness and tingling can be caused by iron or B-12 deficiency.

((Hugs))
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 11/3/2009 8:53 PM (GMT -6)   
I get shaky hands when I'm anemic, but your case sounds like more than anemia. I would definitely see a neurologist. Even if it doesn't turn out to be anything serious, it would be a load off your mind.
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.

Amor fati - Nietzsche


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 11/4/2009 12:45 AM (GMT -6)   
The numbness could be a B12 defciency. Long term deficiency can cause neuropathy which is characterized by numbness and tingling. A similar problem can happen when taking some antibiotics - the monograph with the side effects should mention peripheral neuropathy for the antibiotics that can cause tingling. If it is B12 deficiency (fairly common in Crohn's), you want to be getting B12 shots soon or the nerve damage may become permanent. If an antibiotic is involved, talk to your doctor about changing meds - you don't want to continue with something that causes nerve damage.

contrymom
Regular Member


Date Joined Oct 2009
Total Posts : 39
   Posted 11/4/2009 12:16 PM (GMT 0)   
((((((Hugs)))))) for you!!!

You're going through exactly what i've been going through since Sept 1st!!!!! Except my right side is far worse then my left side. My thought also went either to a side effect of Remicade or MS. scared like hell right now.

I've only been told that I have Crohns since August of 09. But What you're describing is what happened to me after my 2nd treatment of Remicade on Spet 1st.

There is part of me that is happy that I found someone else with the same side effects as me, but also mad because you have them as well. It Sucks.


This is what I wrote in here last week. Asking if anyone had these same side effects.I C&P it, and if there id typos etc. Sorry but i've just about given up on typing in here, or any where else because it takes so long to type and then I am forever fixing typo's


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..which has really affected my the total knee replacement I had on 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.


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 started feeling strange things happening with my nervous system. Numbness, tingling. In hands, fingers, toes, feet, legs etc.At times they feel like they're on fire and hurt so MUCH!!!!. Then they will get so cold and I can't get them warm.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. The Neck/Spine Dr called it a dropped foot!! Which is what happened to my Dad after his last hip replacement!! 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 have an appt a week from today. With a Nuero Dr. Only reason why I got it so soon was because my Gastro Dr, made it, instead of me calling, .

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   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!!!!!!
 
 
 
 
 


contrymom
Regular Member


Date Joined Oct 2009
Total Posts : 39
   Posted 11/4/2009 6:17 AM (GMT -6)   
I also meant to add, that I will mot be tqaking remicade anymore. I'm switching to Humira to see what happens.


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!!!!!!
 
 
 
 
 


contrymom
Regular Member


Date Joined Oct 2009
Total Posts : 39
   Posted 11/4/2009 6:52 AM (GMT -6)   
Knowing that you're going to Mass General, I some what wish we lived closer. This way we could compare side effects etc,

I live about 1 1/2 hours from the Mass/NH border. 495 to RT 95 then up Spaulding turnpike which is RT 16
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!!!!!!
 
 
 
 
 


poohbear37
Regular Member


Date Joined Feb 2007
Total Posts : 98
   Posted 11/4/2009 6:56 AM (GMT -6)   
Thank you all for your responses, i am hoping that my dr will call soon with a neurologist appointment (fingers crossed). I have also read about the nervous system side effects on some of the TNF meds, wondering if it could be that...just hoping the dr's can identify something and let me know if i should go off the cimzia!
Crohn's Disease - re-diagnosed June 2009
Ulcerative Colitis - diagnosed in 2000

26 years old/female
Asacol, Cymbalta, Nexium, Cimzia

Bad reactions to: remicade, lialda & 6mp


contrymom
Regular Member


Date Joined Oct 2009
Total Posts : 39
   Posted 11/4/2009 12:37 PM (GMT -6)   
Just Came back from the Gastro Dr's appt. I had printed out what you said about your nervous system etc.I told my Gastro Dr, some of what was said on this post. This is way over what he is able to do for me.

It has taken over so much of my body, that my Gastro Dr, calledl the Nuero Dr, and got the appt for tomorrow at 7:50 (thurs) instead of waiting a week or so.

My Gastro Dr is getting me an appt either at Mass General or Brighams Women Hospital in Boston. As he wants me to see A specialist for Nuerology and Crohns. As both are getting way out of hand.

Just wonderinh how you've been trying to get an appt with Mass General ???


Sally


He did agree with the reactions that have happened ever since the 2nd treatment of Remicade. He can see them getting worse everyday. He was going to give me Cimzia, and he doesn't know what to give me, because of these side effects. As you're not supposed to get eith Humira or Cimzia if you're having these type of side effects..So I wait to see.

I actually saw this, this AM when I was waiting for my Dr. I found in something titled Digestions and Diet . Its like a small booklet that Has Cynthia McFadden on the cover. She co host the NBC news "Nightline and Primetime" and how she has had crohns since she was 18 and now she is 52.
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!!!!!!
 
 
 
 
 


poohbear37
Regular Member


Date Joined Feb 2007
Total Posts : 98
   Posted 11/4/2009 3:56 PM (GMT -6)   
My Gastro is at the crohns and colitis center at mass general, as I live outside of boston. He has contacted a neurologist at mass general, but supposedly has not heard back from him. I was hoping that I too would get a quicker dr's appt, but that hasnt happened.

I have an appt with my primary care tomorrow and will see see if she has any advice :-/

Let me know how your appointment goes!
Crohn's Disease - re-diagnosed June 2009
Ulcerative Colitis - diagnosed in 2000

26 years old/female
Asacol, Cymbalta, Nexium, Cimzia

Bad reactions to: remicade, lialda & 6mp


xraygrrl
Regular Member


Date Joined Aug 2004
Total Posts : 102
   Posted 11/5/2009 9:06 AM (GMT -6)   
I had all of those problems on both Humira & then Remicade. I was also getting horrible joint pain & weird inflammation all over the place. Last month I woke up & had a massive red swollen lump on my jaw & could barely open my mouth. My dentist couldn't find anything wrong but gave me some steroids. I decided that was enough & told my GI I wanted to stop the Remicade. Now my belly isn't doing so great but at least I'm used to that & know what it is.

sooper
Veteran Member


Date Joined May 2003
Total Posts : 815
   Posted 11/10/2009 3:26 PM (GMT -6)   
ANYONE who has this problem PLEASE add me to msn if you have it I would like to chat. sooper@rock.com We can help each other through this and I pray so much for me and you it never amounts to anything more than somethijng strange that happens. As because there ar4e people who never find anything wrong with these symtoms...


I made a post on shaking on REMICADE a week or so ago, I didnt have any replies. I was fishing through the pages I havnt found mine but I found this. I am on remicade and have started noticing a lot MORE (have had since 2003) twitches and my left hand especially gets shakey as hell. I am scared to death I have MS or Parkinsons. I know how you feel, im in tears right now hoping it is nothing. They wanted to send me for an mri and other braine stuff I forget an ECG ior soethmigng a bit back but I was too scared to go. Now that I have started the remicade and my twitches and shakes have got worst. Im scared as hell. I made posts in the MS and Parkinsons form but im too scared to go back to see what anyone has to say :( I am sorry for taking over your post :( Im just a mess.


although these symptoms are scarey and I cant stop crying the more I research it there IS ALSO people who have had stuff like this happening for years and years and they have never found anything wrong in MRI, ETC . Im in tears : ( I go to my doctor tomorrow to get a referral again to a neurologist, again. I dont know why I didnt go a few years back just too scared I have so much wrong with me I wont even go into it I did on the ms and parkinsons forms im not sure why. But like playing my bass basically to sum it up thats all I have in life.... it is all I have in my life that keeps me going and this where since on remicade I first noticed these increased symptoms and it interfears with me playing : (
My thoughts go out to anyone worried about this
sooper@rock.com
im a professional... on an amateur level !


FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 11/10/2009 7:50 PM (GMT -6)   
Prednisone did this to me a year ago(or was it two). Very creepy.
I use FD&C Blue dye number 1 and it really seems to help me.  There is SCIENCE behind this.  Just ask me and I will explain it to you.  U/C and Crohn's for 34 years.  Blue dye for one month and I am feeling pretty good!  I am so excited by this but I need others to try it with their doctor's permission.  Simple food coloring!!  BLUE1.  
I can't make money on this, it's already in your kitchen.  I just want to help, especially the youngsters.
I do 2 drops in 6 ounces of water when I get up, 2 or 3 drops in 16 or 20 ounces of water that I sip all day and then 2 drops in 6 ounces of water at bedtime.   Max of 7 drops a day.

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, October 26, 2014 12:51 AM (GMT -6)
There are a total of 2,251,499 posts in 250,452 threads.
View Active Threads


Who's Online
This forum has 157586 registered members. Please welcome our newest member, Sarenarn.
275 Guest(s), 6 Registered Member(s) are currently online.  Details
Moonlitnight, Tigerfan53, Acheybody, Patiently1, Cianna, imunique915


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest  Follow HealingWell.com on YouTube
Advertisement
Advertisement

©1996-2014 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer