Can Enbril cause central nervous system damage or bring on the onset of MS?

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mouneera
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Date Joined Feb 2005
Total Posts : 2
   Posted 2/24/2005 2:16 PM (GMT -7)   
  Im a 28 year old female who has been taking Enbril for Rheumtoid arthritis.  I have been experiencing numbing in the back of my head which lasts for a couple of seconds.  I also know someone who is taking Humira and experiences the same thing.  Is this common? confused

oreo
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Date Joined Feb 2004
Total Posts : 528
   Posted 2/28/2005 8:51 AM (GMT -7)   
Hi Mouneera, welcome to the forum. That is a good question and I am unable to give you an answer, sorry. Every person reacts differently to drugs. What is a reaction for one, someone else may not get. Check out the pamphlet that comes with the box of enbrel. In there it lists the common and not so common side effects. Numbing that only lasts a couple of seconds probably is nothing major although you should get it looked at. The reaction may have nothing to do with the actual medication and more to do with how you are injecting it. If you hold your breath or tense up it will cause your body to react to that and just be coincidental to the injection. Talk to your MD about it. Keep in touch.
Oreo
Worry not for tomorrow, for tomorrow will take care of itself.
 
Remember you are special and God loves you very much!!!!


DianaK67
Regular Member


Date Joined Jul 2003
Total Posts : 210
   Posted 3/11/2005 9:36 AM (GMT -7)   

Mouneera,

Hope I'm not too late to catch you.  I have had some problems that may be related to Enbrel or Humira use.  Yes, there is a possibility that Enbrel can cause the onset of ms.  My main issue was/is a change in vision.  A symptom of ms is optic nueritis -- inflammation of the optic nerve.  I still haven't been diagnosed and the docs actually don't think I have ms, but we're not sure if I can go back on any biologics.  I saw my rhumey, a nuerologist, and then an optic nuerologist to rule this out.  I have had an mri and will have one again in June.  Please see your doctor and discuss this issue with him/her.  I'd be interested to hear what your results are.  Good luck

Diana


Here's to the good days!


kelligirl
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Date Joined Apr 2005
Total Posts : 8
   Posted 4/24/2005 9:32 PM (GMT -7)   
Hi There,

Hope I'm not too late to reply. I ran across this site while searching for info on nervous system problems being related to Enbrel. I too am experiencing numbness and vision problems. I have been on Enbrel for about two years and I am 34 years old. I have been to the Doc and so far no one has suggested an MRI. After reading all this stuff about Enbrel being related to MS I'm kinda scared. I'm almost afraid to go back to the Doctor to find out what's wrong. confused

erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 4/25/2005 4:19 PM (GMT -7)   
Oh Boy! enbrel along with the rest of the dmards do run a rare risk of triggering MS and lymphoma. It's very important to have some insight in yourself with these meds: Is your condition with the drug worth the improvement and worth the risk? or maybe you'de feel more comfortable with trying again with some more aggressive traditional meds? also, these dmards can aggrevate underlying nervous system disorders too. numbness at the back of the head is something i've experienced quite often, it's weird and i can feel it coming on and then it goes away in a couple of seconds...but other times it occurrs when i lose consciousness as well (from partial complex seizures and underlying nerve condition). whatever it may be....don't be afraid to talk to your doc! it's a very good thing to keep track of your body. and to catch something early is great. sometimes all it takes is to go off the current med! tell your doc just to keep an eye on things!
sincerely, erin

kelligirl
New Member


Date Joined Apr 2005
Total Posts : 8
   Posted 5/5/2005 9:00 PM (GMT -7)   
Hi All,

My Doctor took me off the Enbrel because of the weird symptoms I was having (numbness, vision problems, etc...) I had to go in yesterday because I wasn't on any meds and my knees were swelling so bad I couldn't walk anymore. Anyway to make a long story short... she brought up the symptoms and she told me that it might be the onset of MS. I AM SO SCARED! She wants me to wait for a month after being off the Enbrel and see if the symptoms go away. If not, I have to go in for an MRI. I feel like I want to sit down and cry. I know I should try not to worry but, It's hard. I am a single mom and it's hard enough with the Arthritis. Has anyone developed MS while on Enbrel or had MS like symptoms that go away after stopping the med? If anyone can give me any info PLEASE write!

THANKS,
Kelly sad

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 5/6/2005 2:28 AM (GMT -7)   
hi kelly,
i'm sorry you have to go through this. the chances of developing MS or like symptoms of it was a risk we all take on deciding to go on enbrel. the thing is.....did the enbrel relieve any arthritic symptoms for you, or had you improved at all on it? how long were you taking it for? many MS signs and symptoms are similar to having RA. weakness, fatigue, back of the head numbenss and much more. i would try not to be too scared yet. YOU WERE TRYING TO MAKE YOURSELF BETTER KELLY! you took a step with the enbrel and that you should be proud of! we have to way the risks. if it's of any comfort to you maybe you'll find you have some of the same things i experience: dizziness, passing out, headache sometime, muscle weekness, inability to pass urine easily, bowel changes, difficulty reading (print jumps around) spotty things floating, dropping stuff, numbenss in limbs pins and needles. plus, i'm under watch for lymphoma right now, a type of cancer. but i still take enbrel in hopes of getting some quality of life back.....i do not worry about MS or the lymphoma because it is a choice i made when first decideing to say yes! i want to have enbrel therapy! go for that MRI kelly! itis better to keep track of suspician! you will feel better after the MRI. perhaps another DMARD you will decide to go on again and try to manage the uncomfortable symptoms. one day as it comes kelly, you hang in there girl!
talk to you soon. we are here to lend you our ears always!
sincerely,
erin

kelligirl
New Member


Date Joined Apr 2005
Total Posts : 8
   Posted 5/6/2005 2:10 PM (GMT -7)   
Hey Erin,

First of all.. THANK YOU FOR WRITING BACK TO ME!! It really helps to know that there are people that I can talk to and that I am not alone. Let me answer some of your questions as well as add some new info. I am 34 years old and diagnosed with psoriatic arthritis at age 25. I went through all the usual meds they try on you first before the Enbrel. I have been on the Enbrel for about two years. Yes, it worked wonders for the arthritis. I felt almost normal. I can't exactly remember the first time I experienced some neurological symptom. I probably dismissed it as nothing and never brought it up to my Doc. Looking back I think the first thing I noticed was maybe some numbness in my arm. That went away and then I started getting the numbness in the back of my head. I also had problems with my bowels and bladder which I went to the Doc for and they couldnt find anything wrong and it finally went away on its own. The next thing was the dizziness or rather feeling like I was falling forward all the time. Even when lying down. With the dizziness I also had the numbness, tingling and feeling sort of like Im being shocked in one arm and leg and also my skin feels like its on fire. Thats pretty much where Im at now with the symptoms. Oh and also I have problems puting my thoughts into sentences. Does that sound crazy? Cause it all sounds really weird to me. I was also going to mention that I wasnt aware of the Enbrel connection to MS. All my Doc stressed to me was the TB thing. Anyway, I guess that was my fault for not reading all of that information that came with it. Well, I guess Im just hoping that maybe these are all just weird side effects of the Enbrel and they will go away with time. For now I am on prednisone and Methotrexate. I have another appt. on the 23rd. Then from there its probably the MRI. Thanks so much for listening..or I guess I should say reading tongue . I do hope everyting goes well for you and the cancer thing. Please keep me posted on that!

Talk to you soon,
Kelly

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 5/9/2005 5:44 AM (GMT -7)   
Goodmorning Kelly! you know what, i thought of a neat thing that we should all be doing. i know personally too that i forget to tell my doc stuff and symptoms and weird happenings...the last post you wrote was very thorough and precise! PRINT IT OUT and bring it to your next appt! and read it to him or her. it gives a lot of insight on how you're feeling and the order you experienced them and your concerns too! i did it my last appointment and the doc thought it was a great idea because we write here in a stress free environment. i jot down on a piece of paper some significant posts i write, so i don't forget them. all of the things i write here, i sometimes feel that i should be saying them at my appointment! i wish you a lot of good luck and good results. when is your MRI? i should be picking up my results of bloodwork today. Keep in touch.
sincerely,
erin

kelligirl
New Member


Date Joined Apr 2005
Total Posts : 8
   Posted 5/9/2005 11:58 AM (GMT -7)   
Hi Erin,

Thats a GREAT idea. I always kind of draw a blank at the doctor when they ask about my symptoms. Then I always remember later something I SHOULD HAVE told them. I don't actually have an MRI schedualed yet. My doc wants to wait till my next appt which is on the 23rd to see if being off the Enbrel has helped at all. I do feel somewhat better. Not so much dizziness and no numbness since being off it. Ive been of it now for about a month. I just hope it all goes away! Hey, and good luck with your bloodwork and do let me know how you are!

((HUGS))
Kelly

oreo
Veteran Member


Date Joined Feb 2004
Total Posts : 528
   Posted 5/10/2005 6:39 PM (GMT -7)   
Kelly, forgive my tardiness in welcoming you to the forum. I am glad that you have found a place that you can find the answers you are looking for. I am glad that Erin has taken you under her caring wing and got you throught the last few days. I hope that you will comtinue to post here. I will be praying for you.
Oreo
Worry not for tomorrow, for tomorrow will take care of itself.
 
Remember healing comes one step at a time, sometimes it seems that its one forward and 2 back but ultimately, always in a forward direction!!!
 
Help HealingWell continue to help people.  Please donate today.  Every little bit helps.  To donate go to www.healingwell.com/donate
 


erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 5/10/2005 8:09 PM (GMT -7)   
hi Kelly! how are you? maybe you were indeed getting some freaky side effects from enbrel now that you feel they subsided a bit since being off of it. just out of curiosity, does anyone in your family have MS? your not a diabetic are you? shingles? i'm just trying to think of what conditions cause neuropathies like you described. high blood pressure? vasculitis? sorry for prying....i'm a thinker....like to put pieces together (helps me with school too, so you're a big help! LOL)
i'm having an MRI of the brain again soon, we can compare and contrast! they make for great art as well! if you request the copies of the slides! i framed mine...they look very cool! but you have to have a bright white matt for the backing behind the MRI slide or else the contrast won't show! i know i'm silly....but hey, we pay good money to have these tests done! take good care Kelly! till later, erin

kelligirl
New Member


Date Joined Apr 2005
Total Posts : 8
   Posted 5/11/2005 10:00 AM (GMT -7)   
Hello Erin,

Don't feel like you are prying at all. If you or anyone else can give me any insight as to whats happening to me..its more than welcome! Ask me anything you think might help. No one in my family has MS. Is it a hereditary thing? I am not a diabetic but, my grandma is. I dont have high blood pressure and I'm not sure what vasculitis is (have to look it up). Oh, and no to the shingles too. Yes, the symptoms aren't as bad as they were so I am hoping it was some weird thing from the Enbrel. I guess if anyone is going to have some weird side effect, it is going to be me. Ive read that nervous system disorders are rare with Enbrel. So lucky me. As for the MRI. I have never had one so I dont know what Im in for. I guess they aren't bad though. I will let you know when it is schedualed. Maybe I will frame it! LOL Im glad I could help with school yeah Talk to you soon and let me know if you have any more ideas. Good Luck with everything!

Kelly

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 5/11/2005 1:30 PM (GMT -7)   
MS etiology is unknown , but strongly points to T lymphocyte reactions (autoimmune response). it's shown that women are twice as likely to get MS than men, and also european americans are at increased susceptibility. there is no direct hereditary link...but just some increase risk. like same for RA...it's not genetic, but if it runs in the family...then there's something there putting us at greater risk. vasculitis is just inflammed blood vessels..people with RA, lupus, hepC andB sometimes get it....it's just inflammation.
you'll have fun at your MRI! now they have noisier ones. but even the louder ones have a pretty catchy beat to them...it feels like you're inside a computer or a rocket ship or something. they have open and closed MRI depending if tight spaces freak you out. but other than that all you do is lay there and relax! i fall asleep sometimes. are you getting contrst IV? and MRI are all by magnets so you don't have to worry about radiation! have a very nice afternoon!

oreo
Veteran Member


Date Joined Feb 2004
Total Posts : 528
   Posted 5/16/2005 1:20 AM (GMT -7)   
Hi Kelly, when is your MRI? If it has happened did it go well? I've never had one but tight comfined spaces really bother me these days so hope I never need one. Hope all is well with you.
Oreo
Worry not for tomorrow, for tomorrow will take care of itself.
 
Remember healing comes one step at a time, sometimes it seems that its one forward and 2 back but ultimately, always in a forward direction!!!
 
Help HealingWell continue to help people.  Please donate today.  Every little bit helps.  To donate go to www.healingwell.com/donate
 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 5/16/2005 12:45 PM (GMT -7)   
yeah  Kelly, how's it going? any MRI yet? i have one for wednesday of the brain for the brain herniation i have. i'm psyched! tongue looking forward to 1 hour of forced relaxation. if you ever get IV contrast...it will make you feel warm or flushed and a metal taste in your mouth, but it goes away real quick. also if youre allergic to shellfish or iodine, make sure you state you are because you can't recieve contrast...but i'm sure they'll ask you that first. a few MS walks are being held soon in the NYC area (speaking of brains and MRI's), oh and if they have ear phones or ear pluds, take em'! cause it's noisy in the mri.
sincerely,
Erin :-)

kelligirl
New Member


Date Joined Apr 2005
Total Posts : 8
   Posted 5/17/2005 12:02 PM (GMT -7)   
Hey All,

Hope you are all doing good! I haven't had the MRI yet. I have an appt with my Doc on the 23rd. She wants to see if I feel better being off the Enbrel. Which I do. Not 100% but better. Im still dizzy quite often so Im not sure if its possible MS or maybe some of the other meds Im taking (prednisone, methotrexate and darvocet). Im kinda scared about the MRI. I hate confined spaces also and I almost dont want to know what it is. I know thats kind of stupid but, its like going to the doctor and having the MRI and discussing the symptoms Im having is acknowledging I have a problem. I know I need to face it. Its just scarey. You know? I am hoping and praying that it is not MS At least with the Arthritis I know what to expect. With MS, it can cause so many different things. Its all just scarey to me and Im trying to keep it together because I dont want to scare my daughter. Writing to you guys helps me alot. So THANKS!! I will let everyone know how Im doing and if anything new pops up I will let you know. TAKE CARE and I will talk to you soon.

Kelly

oreo
Veteran Member


Date Joined Feb 2004
Total Posts : 528
   Posted 5/24/2005 7:12 AM (GMT -7)   
Kelly, hope the MRI went well. Acknowleging is very hard but worrying about the worst case senario is worse. If you find out what it is you can come up with a game plan to fight it. Not knowing you are stuck in the dark with no way out. Let us know how the appt. went.
My prayers are with you.
OReo
Worry not for tomorrow, for tomorrow will take care of itself.
 
Remember healing comes one step at a time, sometimes it seems that its one forward and 2 back but ultimately, always in a forward direction!!!
 
Help HealingWell continue to help people.  Please donate today.  Every little bit helps.  To donate go to www.healingwell.com/donate
 


sidneyquiltmom
New Member


Date Joined Mar 2006
Total Posts : 1
   Posted 3/4/2006 10:30 PM (GMT -7)   
I would document these and bring to your rheumatologist as soon as possible.  I took enbrel for 3 years and in October came suddenly down with ms like symptoms.  this is so scary - no RA meds for at least a year and the ms like symptoms are horrible!  i would not dismiss this. 
 
by the way I would not have changed being on enbrel.  It was last ditch (been on everything else approved in Canada so far) and it worked fairly well for the 3 years.  I had no neurological events and no one in family with ms except an aunt which they don't count.  The chances were something like .5% - of course I got that chance.
 
Don't ignore symptoms though.  I didn't have any symptoms before - this was a very sudden as in instant reaction.
 
Kelly

erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 3/7/2006 2:16 PM (GMT -7)   
Hey all,
this topic hasn't been touched upon in a while, so i'm glad that it was brought back up.
Welcome to HW sidneyquiltmom Kelly! How are you making out with the RA? did it get worse?

Kelly, how are you doing?

I have noticed myself, that seizure activity was increased as i started Enbrel and now on Humira. it was quiet for a while & then when starting the TNFs the seizures acted up again. so i do believe it can aggravate neurological diseases already present.

How did you make out overall with the MS findings?
Sincerely,
Erin


Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


LeeLee123
Regular Member


Date Joined Jan 2006
Total Posts : 49
   Posted 3/9/2006 11:52 PM (GMT -7)   
Yikes!!!!!! Today I met with my regular doctor and the Eye, Ears, Nose, and Throat specialist. The idea of the immunologist is cancelled because I am not getting anymore infections and am doing much better. I was just given an appointment today to see a nuerologist April 3 to make sure I don't have MS. My doctor today says that he doesn't like it because I am dropping things and have these shock feelings in my hands and feet and this dull numb head. The dull numb head sometimes feels like a band going around it. I have had this for years. It seems when I am low on calcium this is worse. I just wonder is all this part of the RA. I had these before I took the one Humira injection that I had the reaction to. I had this when I was just on the methotrexate alone. I have never taken Embrel or any of the other biologic drugs. Actually, these symptoms are better now than they were some couple of months ago. Today I was shocked. I never dreamed of having MS. I can feel for you all. I hope everyone tests out okay. I did notice that the humira brochure said that it can aggravate already present neurological diseases. I couldn't see any mention of MS, but I guess that would be one of them. I saw also where it could produce Lupus like symptoms. I really thought my doctor was being extravagant to send me to the neurologist, but I guess not. Mannnnn I just thought I was being fleeced. I hope none of us have it. Maybe these RA symptoms are so akin to MS symptoms that the doctors just need to rule out the MS. Please post to let us know how you come out. But to answer Moaneera's question, yes, I have experienced that since I had RA even before I was diagnosed. Maybe we have RA in our head bones :) hahhah.... and I am not sure that is the same as my skull. hahhaand some of these strange muscle problems associated with it all. I know I have the gravel neck so bad. No wonder my head is numb. Does anyone else have the "gravel" neck -- when the neck is turned a bit it sounds like gravel rolling around. I am just thinking positive and laughing, but I am scared, too. :))

un-pierrot
New Member


Date Joined Sep 2006
Total Posts : 6
   Posted 9/30/2006 11:58 PM (GMT -7)   
kelly,
 
I am experiencing exactly the same symptoms.  I am also very scared because I do not know if the symptoms will reverse themselves or continue after I stop Embrel.  I am also scared because I don't know how bad my AS will get after I stop.  I have numbness and tingliness or the toes, hands and face.  I have headaches, cognitive problems, loss of executive function, loss of vision, loss of short term memory, and loss of fine motor skills in my fingers. Perhaps the most significant problem is trouble finding simple words,  writing phrases and typing.
 
I would really appreciate if you told me if you were gettign better after you discontinued the Embrel.
 
Thnak you
 
P

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 10/1/2006 7:35 AM (GMT -7)   
Hey un-pierrot, have you told your rheumy about this? Sounds like you need to be switched to a different biologic, please let us know how you are doing.
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea

un-pierrot
New Member


Date Joined Sep 2006
Total Posts : 6
   Posted 10/1/2006 10:06 AM (GMT -7)   
I am seeing her on Wednesday on this matter.  I have stopped taking Embrel.  Do you know if the symptoms reverse themselves after stopping the use of Embrel?

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 10/1/2006 12:46 PM (GMT -7)   
I have heard the majority of the time they do... how long have you been on Enbrel? When did you stop taking it? Please keep us updated... thinking of you.. Duck
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea
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