I can't have Remicade, Humira or Cemzia because of the *RARE* side effects of all 3

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

contrymom
Regular Member


Date Joined Oct 2009
Total Posts : 39
   Posted 11/17/2009 4:26 PM (GMT -7)   

shakehead   shakehead  The Dr said NOPE. I don't want  to take a chance of your body going through anymore side effects to your Nervous system. So *crossing Fingers* we hope that meds I take which will keep any flare ups away. Though steroids that I was given in the hospital for 10 days didn't do anything at all.  But i'm back on them now. If this doesn't work I will have to have surgery. mad thats when I was given my 1st Remicade. Worked WONDERS!!!! then it was all down hill from there. 

The 2nd treatment of Remicade (sept 1st 2009) totally attacked my nervous system. From the tips pf my toes to the top of my head.  By the time I pieced everything together, I had, gone ahead with the 3rd treament of Remicade. The attack of my nervous system equals ***** numbness, tingling feelings, loss of motor function in my hands and fingers. A dropped right ankle, messed up my total knee replacement (March 2009), messed up my rotator cuff and bicep muscle surgeries (June 2009) The pain so bad in my fingers,  palms and right foot, that even 30mgs of Oxycodone 2 X's a day doesn't even take away more then 50% of the pain. ****I do not have control over my right ankle. Its like there is no support. As in tendons etc holding it together. my ankle constantly gets twisted.

 
The more I try to do with my hands and fingers the more they hurt. If I walk more then 5 minutes straight, the pain in my totally replaced knee is like H E double hockey sticks. My right foot is like dead weight. I basically drag it. My knee makes more sounds now then a Marching band does!
 
I can't sit in a chair, sit in a car, with my knee bent for more then 5 minutes, because that makes the pain in my right knee, the top part of my lower leg, and my toes, go bonkers with more numbness and tingling
 
So my Neurologist Dr  told me that besides the Fribro that he told me about 2 weeks ago, I now have neuropothy(sp). Don't even think about touching the skin on certain areas on my body.
 
There is a 95% chance that I will never regain any of the motor functions that i've lost. That none of the tingling and numbness will ever go away.
 
What makes me so mad mad mad   is that for 35 years i've been a florist, a landscaper, a stained glass artist and a jewlery maker. Now I can not do any of that. Takes me forever to type so I basically look at the topics in the forums and see if anyone brings up this about their treatments of Remicade.
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!!!!!!
 
 
 
 
 


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 11/17/2009 6:10 PM (GMT -7)   
I am so sorry you are in such a bad spot.  I have had alot of orthro reconstruction and got the lupus like reaction to remi.  I do want to assure you it was slow, but symtoms did get better (kinda like after nerves where cut during surgery, it was about 1 cm a month).  Granted mine were not as bad as yours, so I agree with Ides it was "like walking thru chest deep snow" after having my feet beaten.

I suggest dragonspeak, because it has help me alot.

I hope you get alot better soon.


Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 11/17/2009 7:34:49 PM (GMT-7)


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/17/2009 6:30 PM (GMT -7)   
I am so sorry you're having such a rough patch. From what I've read about the biologics, even the neurological side effects should go away once the medication has been stopped . . . not right away perhaps, but over time, they should diminish, if not completely go away as your nerves slowly repair themselves. Nerves do regenerate, just not as fast as muscle or tissue. My husband had a drop foot from damage to the peroneal nerve bundle last year from malnutrition (though we did suspect remicade), and he started taking a lot of vitamins to help vitalize nerve regeneration. In particular he took B-12, Folic Acid, Super B Complex, Choline, Inositol, Pantothenic Acid (those 3 are the precursors to acetylcholine, a neutrotransmitter, in both the peripheral and central nervous systems) and Ginkgo Biloba with Vinpocetine (to boost blood flow to the brain - which you shouldn't take if you are on a blood thinner or MAOI). Of course before starting on any of these vitamins, talk to your doctor to make sure that none of these will affect you adversely.

Don't give up hope - I don't believe the 95% chance that you've permanently lost nerve function is true. I think it takes time, maybe another 6 months before you see tangible improvement. But in the meantime, hang in there! With my husband's foot, instead of looking for improvement every day, we looked for improvement every month. At the end of 8 months, he'd regained about 75% of his function, and now it's close to 90%.

Physical therapy, and nerve stimulation with TENS units also helped my husband. Do discuss this with your doctor. My husband's case was not remicade related, but nerve damage can repair itself. My husband is living proof of that - but unlike muscle and tissue, nerves take much longer.

(((Hugs))) Don't give up hope . . . you will hopefully see some good improvement in the months to come. Push your doctors to discuss how you can get back on your feet faster - with PT, nerve stims etc, and have them monitor you (with function tests, and maybe a nerve conduction study every now and again) to give you positive feedback to make sure you're moving in the right direction.

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


Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 11/17/2009 6:49 PM (GMT -7)   
Sally,

I hope that your case is like PV's husband, and you regain much of what you have lost.

Please know that we are here on your side, wishing you well and rooting you on in your journey through all of this. I will be hoping and praying that things get better for you. Please keep us updated on how things are going.
Becky

31 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D, sublingual B12, Coumadin


AzJohnny
Regular Member


Date Joined Sep 2006
Total Posts : 171
   Posted 11/17/2009 7:29 PM (GMT -7)   
Sally,


I'm so sorry this happened to you. If regular pain killers don't work, a neurologist may be able to prescribe something for nerve pain. That has helped me when I needed it in the past.

Hang in there and lean on the people here as much as you feel the need.
AzJohnny
 
I feel a whole lot more the way I do now than I did a little while ago.


lika37
New Member


Date Joined Dec 2008
Total Posts : 8
   Posted 12/28/2009 1:25 AM (GMT -7)   
Hi,
I have Crohn's Disease and had been receiving Remicade infusions for about 3 months. After every infusion The hand/arm that I had the infusion in would be numb for several days after. Then the worst flu-like symptoms would kick in about 2 days after each infusion and last for a couple of days. One afternoon I was in a store when I felt a sensation on the side of my face like someone snapped a rubberband on my cheek. within several hours the entire right side of my body was numb. A MRI showed that I had an eschemic stroke. My neurologist ordered a full neurological work up to determine the cause ie: MRA, bloodwork, cardiac tests, but everything came back normal. The conclusion was that I stroked because of the Remicade. He thinks the "mouse protein" in Remicade was something my body could not tolerate. I am now on Humira which is better except for the "heaviness and aching" in my upper arms as well as muscle spasms in my arms as well. Very painful and hard to sleep at night.
 
 
 Humira-9 months
 Whipple Procedure-9 months ago

Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 12/28/2009 5:13 AM (GMT -7)   
I hope everything returns to normal for you.

Good luck!!
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Precription Folic Acid, Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Pepcid Complete, Questran,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


cbk
Regular Member


Date Joined Apr 2007
Total Posts : 134
   Posted 12/28/2009 5:33 AM (GMT -7)   
I also can't take the TNF blockers. That 95% chance of not regaining your motor function is a load of crap, excuse my language.

I regained function in my legs again. What happened to be is that my right side of my body became considerably weaker than my left, sort of like a stroke. Lost a lot of overall strength.

Guess what? I'm fine now. Took about a year, but I'm fine. You'll be fine also. Doctors like to scare their patients.
22 Female, currently on MTX. Previously on Imuran, Remicade, Pentasa, etc. Ileocolic resection in 2006.

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 04, 2016 9:45 PM (GMT -7)
There are a total of 2,732,834 posts in 301,059 threads.
View Active Threads


Who's Online
This forum has 151213 registered members. Please welcome our newest member, donaldtrump.
269 Guest(s), 6 Registered Member(s) are currently online.  Details
donaldtrump, Gograss, mpost, time2reclaim, GingerGirl, NotQuiteAntonio


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

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer