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Humira/Remicade and MS (Multiple Sclerosis)

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Posted 6/18/2009 4:36 PM (GMT 0)
tainky,

I am having similar issues. My GI put me on Humira for Crohn's. After about 4 months I started having chest pain. My GI sent me for cardiac testing and it was ruled a passing side affect. After about 2 years I started to develop numbness and tingling as well as loosing focus in my right eye. After a bunch of running around to everyone from a regular eye Dr to a neuro ophthalmologist I ended up at the MS Care Center where my now Neurologist told me I have MS. I am now on Copaxone, an MS drug, and no Crohn's meds. I am at a loss for words to describe how annoyed and frustrated I am with these side affects that, after almost 1 year of being off Humira, I have been left with and appear to be permanent. My symptoms read like the side of the Humira box but are listed as "rare but possible". From reading here I would say they are likely and probable...I am NOT a litigious person but had contacted a lawyer to see what my recourse is and apparently there is none. These drug companies need to learn! When will they stop pushing these drugs out before they are properly tested. The drug worked well but at what cost. I feel robbed...
Posted 6/18/2009 4:45 PM (GMT 0)
(((joppie)))
Posted 8/5/2009 6:06 PM (GMT 0)

So it has been a year now with MS symptoms...I have been on Copaxone the whole time and as of Monday when my Neurologist read my last MRI there is no change. Interestingly enough I am on no medication for my Crohn's and seem to be doing well with that. We think there might be some benefit from the Copaxone but that has no proof other than lack of Crohn's symptoms at the moment. We did have an interesting conversation about the fact that there has been no change or progression of my MS. He seemed to think that if it were a classic case of MS there would have been some changes seen in the MRI. This again brings up the idea that my symptoms (including - loss of focus in 1 eye, numbness and tingling) are side effects from 2 years on Humira.

 

Symptoms that are now listed on the box...list below from Humira.com:

 

Nervous system problems. Signs and symptoms include: numbness or tingling, problems with your vision, weakness in your arms or legs, and dizziness.
Immune reactions including a lupus-like syndrome. Symptoms include chest discomfort or pain that does not go away, shortness of breath, joint pain, or rash on your cheeks or arms that gets worse in the sun.

 

Well that is where I am at. Living well but seriously annoyed with the idea that my symptoms, seemingly at least, are going to permanent and maybe caused by a drug I used to try and get healthy. So where are you all at? Have any of you had these symptoms and experienced a remission from them? Does anyone feel that Humira is to blame for these symptoms? I would love to have a conversation with anyone out there that has, had or can shed any light on the subject.

Posted 8/5/2009 6:17 PM (GMT 0)

joppie said...
<SPAN style="FONT-SIZE: 9pt; FONT-FAMILY: Verdana">So it has been a year now with MS symptoms...I have been on Copaxone the whole time and as of Monday when my Neurologist read my last MRI there is no change. Interestingly enough I am on no medication for my Crohn's and seem to be doing well with that. We think there might be some benefit from the Copaxone but that has no proof other than lack of Crohn's symptoms at the moment. We did have an interesting conversation about the fact that there has been no change or progression of my MS. He seemed to think that if it were a classic case of MS there would have been some changes seen in the MRI. This again brings up the idea that my symptoms (including - loss of focus in 1 eye, numbness and tingling) are side effects from 2 years on Humira. <?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" /><o:p></o:p>

<SPAN style="FONT-SIZE: 9pt; FONT-FAMILY: Verdana"><o:p> </o:p>

<SPAN style="FONT-SIZE: 9pt; FONT-FAMILY: Verdana">Symptoms that are now listed on the box...list below from Humira.com:<o:p></o:p>

<SPAN style="FONT-SIZE: 9pt; FONT-FAMILY: Verdana"> <o:p></o:p>

<SPAN style="FONT-SIZE: 9pt; FONT-FAMILY: Verdana">Nervous system problems<SPAN style="FONT-SIZE: 9pt; FONT-FAMILY: Verdana">. Signs and symptoms include: numbness or tingling, problems with your vision, weakness in your arms or legs, and dizziness.
<SPAN style="FONT-FAMILY: Verdana">Immune reactions including a lupus-like syndrome. Symptoms include chest discomfort or pain that does not go away, shortness of breath, joint pain, or rash on your cheeks or arms that gets worse in the sun.<o:p></o:p>

<SPAN style="FONT-SIZE: 9pt; FONT-FAMILY: Verdana"> <o:p></o:p>

<SPAN style="FONT-SIZE: 9pt; FONT-FAMILY: Verdana">Well that is where I am at. Living well but seriously annoyed with the idea that my symptoms, seemingly at least, are going to permanent and maybe caused by a drug I used to try and get healthy. So where are you all at? Have any of you had these symptoms and experienced a remission from them? Does anyone feel that Humira is to blame for these symptoms? I would love to have a conversation with anyone out there that has, had or can shed any light on the subject. <o:p></o:p>

Copaxone is actually in phase II trials for Crohn's right now. Good to hear your MS is stable though.
Posted 12/6/2009 7:08 AM (GMT 0)
Same here... I have been on Humira for about 1 yr. I now have full blown MS disease. Humira gave me MS and now have 2 chronic diseases. :( Everone please get off HUMIRA and FAST.
Posted 12/6/2009 5:06 PM (GMT 0)
Can you give us some info about your case? Age, sex, when you started having symptoms, how long you've had the symptoms for, etc.

It may help other who read this thread decide whether to talk to their dr. about coming off of a biologic.
Posted 1/2/2010 12:30 PM (GMT 0)
My case is pretty much the same as most with humira. my age is 38 and male. i was taking humira starting in june 08 - july 08. i did start having numbness and now have several lesions. i have been to some top experts for ms and have been diagnosrd with ms. the cleveland clinic is where i went and they confirmed for me that indeed humira turns the body against itself and can cause ms and lesions. they told me to never take an anti tnf drug like remicade,enbrel,humira etc.. again for chrons. the neurology team told me that they wished those drugs would not be used for chrons disease. anyone feel free to e-mail me to talk about this at any time. i'm sorry about the typing b/c my hands are numb at this timr due to humira. :(
Posted 1/2/2010 1:57 PM (GMT 0)
Just started Humira, please tell me there are people out there with positive results.

I thought I did my research.

Posted 1/4/2010 5:42 PM (GMT 0)
To the most recent comment. YES THERE ARE VERY GOOD RESULTS FROM THESE TNF blockers. These are rare and serious side effects that could present themself but however it is very unlikely most people will deal with the symptoms in this thread.

I myself am done with it due to crazy side effects as listed in this thread. Now for the fun stuff the actual MRI and stuff. Pretty scared. Regardless the only way I will keep taking this is if they can attribuite my vision changes shaking etc to something else. Tryed wrapping some nervous system effects on the low b12.... but the vision they havnt came up with any ideas for that and unless they find something like Diabetic etc, I will never take this medicine again. BUT LIKE ANYTHING MOST PEOPLE WILL NOT NEE DTO WORRY about THESE PROBLEMS.

Posted 3/20/2010 1:36 AM (GMT 0)
Hello all Humira users,
I started with Remicade in Dec. 05, then switched to Humira in June 06, did my last injection on March 10, 2010.
Just today I saw a neurologist about the tingling or vibration I've been feeling since I first used Remicade and continued to feel when I switched to Humira. Next week I'm having an MRI to check for MS. THIS IS SO SCARY. Before seeing the neuro. I saw a rheumy about the tingling (I don't have numbness anywhere) and he suggested I stop using Humira, which was my plan anyway. And he referred me to the neuro. My tingling must have gone away sometime after I first started with Remicade, then Humira because I don't remember it being a problem until I moved to Austin, TX, in Jan. 08 and experienced feeling vibration in my bathroom floor from the air conditioning motor in the apt. below me (the AC motors were in the ceiling of the bathroom in all the apts.) I couldn't stand to be in the bathroom and I could feel the vibration in other areas of my apt. The drove me up the wall and made me hypersensitive to motor sounds and vibrations of any kind. Now, still today, I'm a little less sensitive to sounds, but still have the vibration, mostly in my lower body, in my pelvic area. I'M DEFINITELY NOT GOING TO USE HUMIRA ANYMORE. I have psoriatic arthritis and a little, mild, psoriasis, so I'll have to take Ibuprofen or something else for the joint pain when it flares up.

Would love to hear from others. Thanks.
Posted 3/20/2010 1:49 AM (GMT 0)
Archer, Since you have a LONG history of this. I really Recommend starting a new post. Feel free. I'd Copy and paste your Issue and start fresh.

Older posts usually get backed up and cause other issues. Plus your new. I'd reccomend a NEW post.
Explain who you are, your story, And This one!

Oh. Welcome to HW.
Posted 3/26/2012 11:30 PM (GMT 0)
I spoke to a physician this week who did research on remicade and stated that it demonstrated that it caused MS. He told me that his research was very quickly crushed. My daughter has been in remission with her crohns for 7-8 years now due to taking buproprian. She is unfortunately in end stage liver failure and with be on the transplant list at the end of this week due to sclerosing cholingitis associated with the crohns. cry
Posted 4/16/2012 8:46 PM (GMT 0)
I realize this thread is a little old but I also came across is while searching about Humira side effects.

I just starte Humira 6 weeks ago for Crohns. These are the symptoms I have now, that I have never had.

Pain in Muscles. Like I had worked out all my muscles at the same time.
Tingling and Numbess in arms and legs.
Foot cramps and spasms.
Extreme fatigue. I realize the previous symptoms sound bad, but this is probably the worst one. It is almost impossible to function due to the sheer tiredness.

My GI told me to stop the Humira and I am in the process of being checked for a few things including MS. I was told that 15% of patients also experience Muscle atrophy so that could be part of it.

The Humira does seem to work for the Crohns, but appears to be causing more harm then good for me.
Posted 4/16/2012 9:50 PM (GMT 0)
I started humira just a few weeks ago as well, I feel like I may be getting better but completely feel you when you say the tiredness! I'm exhausted ALL the time! I don't do anything anymore as I am so tired! Ah it's very annoying. I am also very itchy and I find that my hands and feet fall Alseep a lot.. I don't think this is really an issue as its not very bad, just curious on what your thoughts are as we are expirencing somewhat of similar things :p
Posted 5/31/2012 3:13 PM (GMT 0)
I have had Crohn's for a little over 7 years now and started Humira about 2 1/2 years ago. about 6 months ago I started having numbness and tingling in my hands and has progressed to my arms, legs and feet. I have also started having spells of being very weak and dizzy with some blurred vision. Stress, adrenaline and any extreme emotional change seems to trigger this and make it worse. I went to the neurologist this week and was told that it sounds like MS. My question is, if that's the case and I do have MS...as well as Crohn's, where do I go from here? Can I live a fairly normal life? What's the worst case scenario?
Posted 5/31/2012 10:24 PM (GMT 0)
My doctor is checking me for Anti-DNA Antibodies. He says it is a rare occurrence but would explain all my symptoms as it presents similar to Lupus.
Posted 6/1/2012 8:06 PM (GMT 0)
Hi I do have MS(had it since 1999). Can't take any of the biologics (humara etc) b/c even though it would make the CD better will make MS worse. So Sorry. There is the 5 ASA drugs....
Posted 6/1/2012 8:10 PM (GMT 0)
I guess it is just me... read the people that are on copaxone and their CD is in remission. I am soo happy for you. Not for me. Keep loosing weight, loose stools, pain, fatique. Copaxone doesn't help CD, but does help MS.
Posted 12/5/2012 5:36 PM (GMT 0)
Hi there!
I was on Humira for nine months last year and have had neurological issues ever since. Skull tingling, skin nerve pain to my back and face. Throat, left shoulder and neck pain followed. Recently I've been experiencing tingling and numbness in my right leg. MRI shows a lesion on my spine. MRI of brain came out clean. This is over a year after my last dose of Humira.
Thoughts?
Posted 5/26/2013 1:35 AM (GMT 0)
Hi All,

I have UC since 3 years and I live in Toronto. I tried all the meds (Asacol, Salofalk, Imuran, 6MP) but they did not work for me, currently I am on Remicade. My first 4 infusion went okay but from 5th infusion I started getting Hives and itching. After a day after 6th infusion I started feeling mild numbness, weakness in calf and arm muscles. The weakness in arms and calf lasted for 3 days. I informed this to my GI and he referred me to a Neurologist to rule out any possiblities of Multiple Sclerosis. Neurologist said everything was ok. I was very tensed because I did not want another disease like MS on my plate. My doctor wants to do Antibody test to check if Remicade is working for me. But I have almost decided to stop Remicade. My next infusion is on June 8th and he wants to discuss with me the implications of stopping Remicade. Maybe he will suggest me to continue with Remicade but I have almost made up my mind. I am considering Heleminthic therapy(Whip worm). Not sure what should I say to doctor if he tries to convince me to stay on Remicade.

Sorry for my really long post. I need some suggestions here.
Posted 5/26/2013 3:38 AM (GMT 0)
VRow - Welcome to Healing Well! Might I suggest that you start a new topic and pose your question again. You posted to a very old thread and it might keep members from going to the bottom and seeing your post. I don't have any additional info on MS from the anti-TNF meds but I do know other memberrs have had similar experiences to yours.
Posted 5/26/2013 5:45 AM (GMT 0)
Hi there, not to scare anyone but i got PML from taking Humira. I started with numbness and tingling in my right leg and then spread throughout the whole right side of my body within 1 month. Luckily i went to a neuro right away and they thought it was MS as well. They did a CT and MRI within 1 week and said it wasnt MS, but PML. Please get this checked ASAP as time is a factor. Luckily I caught it early enough (if i waiting another month or two it owuld be too late and the virus would have taken over and killed me, no joke, within 6 months)...please please please look into this... i am not a hater on immunosupps, as they did put me into remission, but PML is no joke and is 100% brought on by the humira (as you have a weak immune system) and 80% of people have this virus in their bodies.... I am thinking of your wife!
Posted 5/26/2013 6:13 AM (GMT 0)
Good to be aware of the things that could happen, and I agree that if you start having these symptoms to get it all checked out as soon as possible. But probably should add here that these things are pretty rare complications and that a lot of people take Humira with wonderful results and no side effects. Thought that should be said, because honestly reading some of this could make someone want to run from treatment, and that also comes with a lot of risks and complications from not treating the disease!
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