Humira and peripheral neuropathy

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kotite4ever

kotite4ever

Joined
Mar 8, 2014
Messages
41
Hi all - my GI doc prescribed Humira for my Crohn's of the terminal ileum back in October of 2013. That and prednisone helped get my flare under control, but I've discontinued Humira under advisement from my GI doc and neurologist because I've had a lot of peripheral neurological issues as a side effect (most likely) of the Humira.

My questions are 1) has anyone else on Humira had this kind of side effect and 2) if so, do these horrible tingling/numb/pain/clumsy feelings go away once the drug is out of your system? Thanks!

Brian
 
Yes and unfortunately after discontinuing Humira it never went away for me. I think Humira kicked in a bunch of problems for me. The drug does have a long half life and so it will probably take a while to fully get it out of your system and I hope the PN stops for you. Most people with drug side effects are better after stopping the drug but some of us have had permanent damages.
 
Neuropathy in both feet
I,m starting a regime of amitriptyline today as supported therapeutic benefits help with neuropathy in some cases.
I'll let you know how it goes.

Best
Miles
 
Thanks for the responses! It's such a shame, this drug works very effectively for Crohn's but in my case, I'm really thinking I should have followed my intuition and refused the Humira treatment. I hope you both find some relief for your PN.
 
Oh one other question, for both of you - how long were you actually on Humira when the first PN symptoms set in, and did you discontinue right away? Thanks
 
Mine started right away. Small stabbing pains in both feet and now general numbness in both feet.

Miles
 
Hi Miles - sorry to hear that :(

For me it took a few months, and only after my doctor switched it from every other week to EVERY week.
 
I can deal with neuopathy as long as the gut goes into remission. Both, however are hard to handle.

have a good week.

Miles
 
How about headaches, anyone ever have those? Sorry for the 20 questions routine here, I'm just nervous and a little angry about these side effects haha
 
No matter what drug you take for your disease you will have side effects. You have to keep in mind you are putting serous chemicals into your body to fight its natural immune response, it's only natural it's going to give you some kind of trouble. I feel your pain and frustration having failed with almost every drug available in Australia at the moment. I am about to start humira as my last ditch effort. Fingers crossed I don't have this PN reaction! Good luck finding your most effective and tolerable drug in this journey were on!!
 
Same to you, Perth! I know this disease is so awful that we almost have no choice but to try such powerful drugs to keep it under control. Best of luck to you with Humira!
 
Hey guys - I'm still having some headaches and leg weakness, and general "unsteadiness." If I had to go back in time, I would not have taken Humira. I know others have had success, but it's been two months and I'm worried that these neurological symptoms might be for life.
 
Kotite,

I feel my case of PN may be like yours. I have begun Humira every week and wonder if the side effects will be permanent.


Side effects include dizziness, extreme fatigue, foggy headedness and numb feet. I am also taking Aza (100mg per day), and am tapering Pred (down to 25 Mg per day). My body is bombarded by all these new drugs so Humira might not be the total reason for PN.

I suppose we should hope for remission and then deal with the side effects.

Best,
Miles
 
Hey Miles - sorry to hear that. Your symptoms sound a lot like mine. I stopped the Humira almost two months ago, and the symptoms persist. I'm really worried. These symptoms are far worse than anything I've ever experienced from my Crohn's disease. I'm so frustrated and angry right now, I think it was the weekly dosing that did me in too.
 
Sorry to hear that you are still having problems Kotite. You look like a fairly young man so maybe relative youth will work in your favor. I hope so!

I am 63 and have been a Crohnie for over 40 years. I decided to use Humira after much contemplation. If I rolled snake eyes with Humira, it was my call.

I wish all you young folks well and hope that remission is just around the corner for you.

Best
Miles
 
thanks Miles - I'm not quite 40 yet, so yeah, I hope I'm able to turn this around. I'm sorry that you've been fighting it for so long but I hope remission is in the future for ALL of us, and the near future at that.

Best,

Brian
 
Thanks Brian.

From my experience, you will only "walk through the valley" for so long. One day you will be in the daylight and this will be a memory.

Stay strong!

Miles
 
if OP is still tuned in...was wondering if your peripheral neurological issues ever subsided after ceasing humira.
 
Hi there! I still kind of have the symptoms. They haven't progressed, but they're still there, on and off. It's very frustrating.
 
Thanks Kotite4ever and nogutsnoglory for getting back...

In my case, I developed a numb sensation at the front of my calf and the top of my foot the day after my first dose of Humira. Actually developed a mild "foot drop" condition. It has yet to subside even though its been four weeks since the Humira.

My GI doctor told me not to take the Humira until checked out by neurologist. He said there was a link between Humira and "unmasking" multiple sclerosis. Still waiting to get an appointment with the neurology dep't. I gather the neurologist will conduct an MRI. If no MS, then I'll be put back on Humira.

Was wondering how your doctors accounted for your neurological symptoms and if they brought up the MS possibility? What did your doctors recommend regarding the continued use of Humira.

Thanks, Trebor
 
They were baffled by mine and couldn't make sense of it. I'm convinced humira kicked in my fibromyalgia and chronic fatigue.
 
In my case, they ordered an MRI months ago and while they found no initial evidence of MS lesions or demeylenation (spelled that wrong I'm sure) in my central nervous system, they did find some small white dots that didn't seem to bother my neurologist TOO much. However, because of my symptoms (numbness, unsteadiness, headaches, eye floaters, etc) he doesn't think I'm 100% out of the woods either. I'm getting a follow up MRI in January.

I will say that the symptoms have lessened somewhat in my case. I still have them, but they are not as worrisome as they were at one point. Also I have a lot of anxiety about it which seems to exacerbate these symptoms, and if I take a xanax, I don't even notice them. I don't know. I hope it's all in my head, although I do think that the Humira did SOMETHING because I never had any of these feelings before, and they started showing up immediately after my doctor switched me to weekly dosing of Humira (as opposed to every other week).

I don't think I have MS necessarily, but I do think that my nervous system was somehow compromised by this drug, absolutely.
 
Newton's 3rd Law: "For every action there is an equal and opposite reaction." In my experience, Humira is no exception. I believe Humira has caused my light headedness, unsteadiness (sometimes I am afraid to drive), and my fatigue.

Crohn's flares are gone though.

Good trade? With the little bit of gut I have remaining-- Yes.

Best to all,
Miles
 
Miles - I feel the same exact way. Lightheaded, a little unsteady at times, but Crohn's is (knock on wood) under control.

Take the good with the bad I suppose.
 
My GI says my problems are a result of active disease not Humira.
Then why do I no longer exhibit the symptoms of active disease? My GI says that's because of Humira ! He is slow to fault Humira for anything.

I think some doctors worship at the altars of pills, medications and shots.

100 years from now today's version of modern medicine will be looked at as we do doctors who bled their patients to cure them.

Funny. In a cosmic kind of way.
 
I could NOT agree more.

I never had this problem before, and then it shows up IMMEDIATELY after I up my dosage of Humira, I start getting tingling and numbness? No, I'm not buying that it's the Crohn's at all.
 
kotite4ever said:
In my case, they ordered an MRI months ago and while they found no initial evidence of MS lesions or demeylenation (spelled that wrong I'm sure) in my central nervous system, they did find some small white dots that didn't seem to bother my neurologist TOO much. However, because of my symptoms (numbness, unsteadiness, headaches, eye floaters, etc) he doesn't think I'm 100% out of the woods either. I'm getting a follow up MRI in January.

I will say that the symptoms have lessened somewhat in my case. I still have them, but they are not as worrisome as they were at one point. Also I have a lot of anxiety about it which seems to exacerbate these symptoms, and if I take a xanax, I don't even notice them. I don't know. I hope it's all in my head, although I do think that the Humira did SOMETHING because I never had any of these feelings before, and they started showing up immediately after my doctor switched me to weekly dosing of Humira (as opposed to every other week).

I don't think I have MS necessarily, but I do think that my nervous system was somehow compromised by this drug, absolutely.
Click to expand...



Take the XanaX. :)
 
Ha oh I do take the Xanax when I need to, I just don't want to become dependent on it. Ah, the joys of having a chronic illness!
 
Hey folks! First post on the forum so a little nervous lol.

I actually have hereditary demylanating peripheral neuropathy which put me on disability just over a year ago. The Crohn's kicked into high gear about 6 months ago after being on surgical remission. I will be starting Humira as soon as my patient assistance application is approved. Guess not really a quest but y'all definitely caught my attention since I will be starting Humira, already having the PN issues. Interested in how y'all are progressing with the PN symptoms and I will try to let y'all know how if it cranks my PN up or not.

Pardon the rambling. Looking forward to meeting and getting to know some of my fellow traveler's on this road we are all on.
 
Hey Cirberus - ugh, sorry to hear that. Hope you're feeling at least a little better now. The plus side of the Humira is that it DID really help my Crohn's. Hopefully you get all of the benefit but none of the side effects.
 
I started Humira in January for Crohn's. It has done wonders for the Crohn's, but for the last month or so I have had frequent headaches, tingling in my fingers, dizziness and visual disturbances. My integrative health MD told me to get back on the LDN, as it would help heal the nerve damage, and stop taking the Humira. Haven't seen my GI yet...
 
Yeah, that's how it was with me. Great for the Crohn's, but with bad side effects.

How is LDN? I can't find a doctor to prescribe it for me, even though I found a pharmacy on my own that will do the compounding.
 
I took LDN for several years, and it did keep me out of the hospital, but my CT scan showed some underlying inflammation, so my GI convinced me to get on Humira. If you look for an MD with "Integrative" in his description, you will probably be able to get it prescribed. I am thinking I will try to stick with just LDN and change my diet- and hope for the best!
 
Hi All,
I am a newbie to this forum, don't even have a picture of myself up yet. Don't know if you are still on this thread, but wanted to chime in and hope for some response.

I have been on Humira for almost 4 years. I had been getting strange feelings in my feet for a while: a feeling like I had "stubbed" my foot and suddenly had a blister. Then it spread up to my thighs and my legs felt "tired" and it seemed to be going into my arms. They did an MRI and found nothing, but they thought my B-12 was low and put me on a daily dose. It seemed to get better for a while but has suddenly returned. I don't know if it is the Humira, but lots of anecdotal evidence. Wondering if I should get off of it and try something else.

I totally understand Kotite4ever's frustration and anger. My doctor immediately put me on Humira when I was diagnosed at age 46. At first I declined and tried to do homeopathy: LDN, diet - and it got much worse. Finally, 3 months later, I opted for Humira. It immediately worked and has kept me symptom free. But the peripheral neuropathy has returned and i am frustrated, angry and don't know what to do or where to turn. My GI is suggesting remicade as an alternative, but that has its own side effects. Have any of you ever considered stopping all medications and seeing what happens? Or stopping and trying to use diet, LDN, etc. again? What about instead of the "top down" theory (hitting Crohn's hard with Humira) I go back to "bottom up" and start using the first line of drugs they used to give. My GI recommends against this.

Sorry, this is a bit rambling. Thanks for reading.
Steve

Hey momofzach, any luck with that (just reread your post from earlier in november)?
 
Hi Sweeve, I have been doing well on just the LDN and watching my diet so far, and the tingling in my hands is better already. Since stress is usually the biggest trigger with me, I am trying to make sure I get plenty of sleep and take it easy.My GI doesn't know that I stopped Humira, I see him next week. His nurse told me on the phone that it was NOT caused by Humira, and to see my primary care MD. I did that, and he did a bunch of labs that came back normal. My eye exam was also normal, even though my vision is still bothering me, and occasional dizziness. I see my primary again in two weeks, depending on how things are going he mentioned doing an MRI if needed. Good luck, and keep us posted on how things are going :)
 
Hi Momofzach,

Thank you so much for your thoughtful and kind reply. I like that you have taken matters into your own hands until you see your MD. Please keep me informed as well. Can't tell you how much it means to me to not feel so alone in all of this. Sending you a cyberhug! :)
 
Thank you, this is a great forum with so many people who know what you are going through and truly understand how tough it is dealing with the challenges of this disease. You can say things here that you wouldn't even tell your own family, because they get it! Hugs to you too!
 
Hi again, hoping you are willing to share what you specifically mean by watching your diet. The diet I tried 4 years ago was so extreme that it was too much for me. so wondering what you do?
 
I have never been good at following a really strict diet either, lol.Everyone's different, but avoiding sugar/excess carbs,alcohol, and things that have given me trouble in the past- corn, onions, peppers,mushrooms. Also, staying away from things that sometimes have caused problems, but other times not, like the eggplant rollentini I love at a nearby restaurant. I am picking safe, simple meals, a meat and cooked vegetable whenever possible over the dishes that have so many ingredients there is no way to tell what is in it. I have been tested for gluten and dairy problems, and other things like soy that give people problems and nothing showed up. So this is strict enough for me :)
 
Hi again. That sounds like a very reasonable approach to diet. Glad to know I'm not the only one who cannot (will not?) follow a very strict diet. Some of my greatest pleasure comes from food.
 
I love food too, and feel bad for people who are so restricted in their diet. I saw my GI yesterday, and of course they don't think Humira caused my symptoms. She wants me to do another round of the medicine, and just see if the symptoms come back. If they do, she wants to do a head CT. I have had reactions to every medication, and she made the point that if I give up on this one, there is nothing else they can do for me.
 
I hope you are successful in finding the cause of your symptoms. Neither my GI nor the neurologist who did my Nerve Conduction Test believe Humira is the cause of my peripheral neuropathy issues, which seem to come and go. Keeping you in my thoughts and please let me know what, if anything, you discover.
 
sweeve said:
I hope you are successful in finding the cause of your symptoms. Neither my GI nor the neurologist who did my Nerve Conduction Test believe Humira is the cause of my peripheral neuropathy issues, which seem to come and go. Keeping you in my thoughts and please let me know what, if anything, you discover.
Click to expand...

I have had peripheral neuropathy since the mid 90's. I had taken a lot of steroids over the years for Crohns, Imuran and others. My Doctors then said all can cause PN as well as B-12 deficiency - I get a shot of B-12 every month since the 90s. . I have been on Lyrica and now Cymbalta to ease the symptoms - burning carpet pads glued to feet wrapped in barbed wire. Humira has not changed my PN symptoms one way or the other since last March. They affect me mostly at night, and when they are really bad then I take a tramadol.Humira makes me sleepy/tired/fatigued but has worked on the Crohn's .
 
trebor-HI said:
Thanks Kotite4ever and nogutsnoglory for getting back...

In my case, I developed a numb sensation at the front of my calf and the top of my foot the day after my first dose of Humira. Actually developed a mild "foot drop" condition. It has yet to subside even though its been four weeks since the Humira.

My GI doctor told me not to take the Humira until checked out by neurologist. He said there was a link between Humira and "unmasking" multiple sclerosis. Still waiting to get an appointment with the neurology dep't. I gather the neurologist will conduct an MRI. If no MS, then I'll be put back on Humira.

Was wondering how your doctors accounted for your neurological symptoms and if they brought up the MS possibility? What did your doctors recommend regarding the continued use of Humira.

Thanks, Trebor
Click to expand...

Reviewing my old posts and came across this. I did have brain and spine MRI's back in 2014. A demyelinating lesion was found on my thoracic spine. I was instructed never to take Humira or any other biologic again.
 
Hi Trebor
I have very similar neurological symptoms in my leg and face. I have stopped the Humira a little over two weeks ago. Can you tell me if your symptoms became less frequent or noticeable after several months? Right now feeling nervous it won’t go away.
How are you feeling now? Any tips you can give me on how to navigate through this would be greatly appreciated. This is giving me too much anxiety. Thanks in advance. Best regards.
 
I was wondering if this thread is still active. My son is dealing with neuropathy after only two shots of Humira. I was wondering if yours ever died down over time?
 
Ok. I should be starting Humira soon and now I'm scared. My doctor didn't prescribe anything BEFORE the Humira and he was fast to set me up with this Humira Nurse Ambassador.

I already have numbness in part of my left foot that is permanent. I actually do not know what has caused it, but I have Spina Bifida Occulta and a low-lying tethered spinal cord so these may be the reason?

I drive a stick-shift vehicle and if I cannot feel my left foot then I cannot drive. I don't want the left foot to get worse.

Have a good weekend. 🐸
 
Lynda Lynda said:
Ok. I should be starting Humira soon and now I'm scared. My doctor didn't prescribe anything BEFORE the Humira and he was fast to set me up with this Humira Nurse Ambassador.

I already have numbness in part of my left foot that is permanent. I actually do not know what has caused it, but I have Spina Bifida Occulta and a low-lying tethered spinal cord so these may be the reason?

I drive a stick-shift vehicle and if I cannot feel my left foot then I cannot drive. I don't want the left foot to get worse.

Have a good weekend. 🐸
Click to expand...

Humira was my first med too. I was only diagnosed with CD in Aug of 2017. Needless to say I’m not a believer in the top down approach.
 
I don't know if it was from Humira or one of the other biologics but I developed peripheral neuropathy and Gabapentin has helped.
 
ronroush7 said:
I don't know if it was from Humira or one of the other biologics but I developed peripheral neuropathy and Gabapentin has helped.
Click to expand...

Thanks. I was given gabapentin. It helps a little, but I don’t like the way it makes me feel. It makes me forgetful.

Does the gabapentin make your neuropathy go away or less painful?
 
I started Humira about a month ago, and find that I get dizzy spells. It does not happen all the time however and I used to get them once in a while from not eating or drinking enough water (I also have low blood pressure). I have noticed that they seem to be worse now - could be a coincidence. In reading on neuropathy, it seems if I do have this it would be autonomic. I have no tingling or any other symptoms. Had some headaches, but they are going away now. Asked the Humira nurse, my gastro and they did not know. So off to see the family doc. Today, I had to lean on a wall to settle myself.

Anyone experience that without tingling?

Thanks!!
 
My son is still dealing with reoccurring nerve pain -pins and needles. He is only 22. He wants this fixed not medicated but that may be his only choice. Did anyone get a spinal tap? Doctors want to give him Elavil.
 
My 20 year old just started January 30th. He's done two doses since and experiencing the numbness and tingling in hands, feet, and legs. Just called the Dr., waiting for a response but it sounds like the recommendation will be to stop Humira.
 

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