Remicade side effects - brain lesions

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

RonRob
New Member


Date Joined Aug 2013
Total Posts : 3
   Posted 8/4/2013 12:50 PM (GMT -6)   
  1. I was diagnosed w/RA about 9 years ago and have been treated w/Remicade for the past 7+ years, without a problem.  Now have "brain lesions" that my MD says is probably from the Remicade.  Anyone else w/similar situation?

teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 8/4/2013 11:35 PM (GMT -6)   
I RonRob Welcome to HealingWell, I never heard about that as
a side effect from Remicade. I did Remicade for 5 years with no side effects. the reason I stopped the remicade was it got to expensive for the infusion.
I was diagnosed with Crohns Disease 1992 . I also was diagnosed with Rheumatoid Arthritis.

Meds: Enbrel: Once a week injection, Vitamin B-12 injection monthly, Vitamin D :Once a week.



FORUM MODERATOR: RHEUMATOID ARTHRITIS

RonRob
New Member


Date Joined Aug 2013
Total Posts : 3
   Posted 8/5/2013 9:11 PM (GMT -6)   
According to my Rheumatologist this is quite rare - especially after 7 years. I was hoping to hear from someone with a similar issue and learn a bit more about it.

Roxie531
New Member


Date Joined Aug 2013
Total Posts : 2
   Posted 8/8/2013 11:11 PM (GMT -6)   
Do you know if there bad side effects taking Remicade, Prednisone, Azathioprine together?

pradalover345
New Member


Date Joined Aug 2013
Total Posts : 2
   Posted 8/24/2013 12:56 AM (GMT -6)   
RonRob,
Sending you my warmest wishes, this is quite a scary read for me. I am currently awaiting scheduling with Neurology as I am having some type of neurological issue that needs worked up. I have been on Remicade for the past few years and was unaware that this was a potential side effect. How did they discover it... if you don't mind me asking?
Curious because like I said I'm having some type of issue and they're not sure what the cause is. My boss noticed my pupils were unequal the other day, then they were not equally reactive/responsive to light and now I am experiencing some kind of unexplained neuropathy, my feet have been "asleep" for nearly a week and a half.

RonRob
New Member


Date Joined Aug 2013
Total Posts : 3
   Posted 8/24/2013 10:39 AM (GMT -6)   
Pradalover
I have been a "poster child for Remicade" for several years.  I was on a 7mg/kg of body weight dose every 6 weeks, for several years, and my RA symptoms had just about disappeared.  I loved it.  My blood work and other tests were all perfect. 
 
Then I  started with strange sensations in my finger tips, all 10 fingers.  It was/is not so much tingling as a hypersensitivity.  I am constantly aware of my fingers.  This plus a marked decrease in the strength in my hands.  I saw my Rheumatologist on a Friday, he ordered a brain and upper spinal cord MRI for Monday afternoon, and Tuesday morning he called to say I had lesions in my brain.  I saw a Neurologist, had an EMG and NVC to test the nerves and muscle activity in my hands and arms, both of which showed abnormal loss of strength and marked weakness.  I then had a spinal tap and I am waiting for the results of that to come back.
 
Both doctors seem positive that I have Multiple Sclerosis, brought on by the Remicade or just developing by itself.  The results of the tap are expected to show certain types of proteins that will determine the cause.  Either way, I will no longer be given Remicade.
 
The plan, at the moment, it not to treat the RA with anything other than Methotrexate. There are drugs available that will help both RA and MS, but I'd have to stop the Methotrexate, which I've been on for 10 years or more. 
 
My Rheumatologist, who is wonderful, said, if this if from the Remi, I will be the 3rd patient he has had since he stared using the drug.  The Nuro MD is not familiar with this side effect at all.
 
I had my last infusion 6/27, and I'm feeling OK, but I am extremely fatigued.  This could be from MS or RA.
 
I hope that you get worked up and learn what is causing your problems, dealing with a known is easier than an unknown.  If I can help or share any other information, I'd be glad to.  I'd love to know what your final result is.
 
Good luck and God Bless.

sindj
New Member


Date Joined Aug 2013
Total Posts : 1
   Posted 8/24/2013 5:35 PM (GMT -6)   
I am new here. I got a eye problem in January2013 called iritis. The doctors all say it is from RA. All test come back neg. still the doctor put me on plaquenil. I cant take that anymore I have developed reflux and my scalp was flaky and I had spot in my vision. It was so bad I couldn't see. I thought the point of treatment was not to go blind again. Has anyone had any problems taking plaquenil? I was told as a child that I had RA but have never been treated. I am almost fifty. Keep thinking something else must have caused it. I am just ready to feel good again.
 

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7116
   Posted 8/24/2013 5:57 PM (GMT -6)   
I belong to another forum for spondylitis. There are several people there diagnosed with MS from taking Remicade. From the Black Box Warning on Remicade:
"REMICADE and other agents that inhibit TNF have been associated in rare cases with CNS manifestation of systemic vasculitis, seizure  and new onset or exacerbation of clinical symptoms and/or radiographic evidence of central nervous system demyelinating disorders, including multiple sclerosis and optic neuritis, and peripheral demyelinating disorders, including Guillain- BarrĂ© syndrome. Prescribers should exercise caution in considering the use of REMICADE in patients with these neurologic disorders and should consider discontinuation of REMICADE if these disorders develop."
Moderator Crohn's disease, Osteoarthritis and Irritable Bowel Forums

CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, pulmonary hypertension, degenerative disc disease, asthma, severe allergy and a host of other medical problems.

Beto
New Member


Date Joined Aug 2013
Total Posts : 1
   Posted 8/31/2013 10:35 AM (GMT -6)   
 Hello,
Last year I started with aura migraines (only a few since then) and more recently I got an MRI of my brain because in June I lost sight from one eye for a couple minutes.
I just found out my brain MRI shows a 8mm x 9mm x 1.2cm mass on my medulla. The neurosurgeon says that is an incidental finding not related with the temporary blindness. He ordered another MRI of my brain in six weeks and "wait and see"
Coincidentally as RonRob I've being on Remicade IV infusions (every eight weeks) for the past 10 years for ankylosing spondylitis. My rheumatologist stopped Remicade and Methotrexate.
Is it possible the long term used of Remicade caused the mass on my brain?

elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 9/3/2013 12:45 PM (GMT -6)   
Ronrob,
 
First, I am sorry about your situation.  I do recall that the TNF inhibitors, like remicade, enbrel, etc..., can cause MS brain lesions.  I do think it is rare, but is a listed side effect for all of the TNF inhibitors, maybe for all of the biologics in general.  I thought, though, that it was reversible once the drug was actually stopped?  I guess maybe you will find that out once you see the neurologist?
 
Please let us know, since so many of us are also taking these same drugs.
 
Best wishes for you.
 
El

joycef
New Member


Date Joined Apr 2015
Total Posts : 3
   Posted 4/11/2015 7:57 PM (GMT -6)   
I have been taking remicade for about three years with no problem. I also have fibromyalgia, There are times that a am in a lot of pain. I just had an infusion and by labs on the sed rate was 40. Exactly what does that mean besides the inflammation in ones body. Please help. I also take the generic for Lyrica which is suppose too help my fibromyalgia. Also take prednisone, 5one day and 1/2 the next. really do no understand all of this. Maybe you guys can help me. I was told that 40 was really had on the sed rate.

joycef
New Member


Date Joined Apr 2015
Total Posts : 3
   Posted 4/11/2015 7:58 PM (GMT -6)   
I also wake up with headaches probably 3-4 weekly. Usually take 2 Tylenol when this happens.

joycef
New Member


Date Joined Apr 2015
Total Posts : 3
   Posted 4/11/2015 8:03 PM (GMT -6)   
I also take methotrexate five tablets each Saturday. I vitiamins. Maybe I can get this sent to you guys but it will probably be piece milled. Sorry. I am so confused. My friend toldme that the remicade causes cancer but hell everthing causes cancer but if I dont' take it I will be crippled.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/11/2015 11:34 PM (GMT -6)   
Welcome, joyce.

You found an old thread. I'm not sure these people are still posting.

I'm new to RA so I'm just getting started on this crazy train. It seems like anything you take does have some danger, but then not taking it can be just as bad too.

I have fibromyalgia too, along with other lovely things. I hope to see more from you.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

celebrate life
Veteran Member


Date Joined Dec 2014
Total Posts : 2065
   Posted 4/11/2015 11:44 PM (GMT -6)   
Hi Joyce and welcome to the forum. 40 is a pretty high sedrate and an indicator of inflammation. Perhaps you want to consult with your rheumy about switching to a different biologic med. When Humira began to fail for me I went to Enbril. Best wishes,
Beth
Husband age 56
Dx: PC with widespread Mets to bones and nodes 11/2010
PSA @ dx 1983 Gleason 4+5 stage IV
Docetaxel 1/12
Zytiga7/12
Smarium 5/13
Xtandi 9/13 xofigo 1/14
Cabazitaxel 2/14
Zytiga 10/14
Ongoing since dx: denosomab and Luprolide
Begin RT to sacrum X 10 1/15 PSA 1/15 increased to 100 rising
2/15End Zytig
Pilot study DRibbles vaccine begins 3/15
CT shows liver lesions not present in Dec

rocky22
New Member


Date Joined Jul 2017
Total Posts : 1
   Posted 7/25/2017 11:32 PM (GMT -6)   
Hi Rob any update on your latest results from the brain lesions?

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14976
   Posted 7/28/2017 12:50 PM (GMT -6)   
Rocky22, this an old thread & the OP has not been here since the above date.
Susie
Moderator in Chronic Pain & Psoriasis Forums
New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, October 18, 2017 11:49 PM (GMT -6)
There are a total of 2,884,011 posts in 316,449 threads.
View Active Threads


Who's Online
This forum has 157577 registered members. Please welcome our newest member, MeMee.
280 Guest(s), 4 Registered Member(s) are currently online.  Details
countingstarsx, Drozco, Lapis_29, WV Mike


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

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer