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Crohn's Disease Forum » Treatment » Humira/Adalimumab » Humira and peripheral neuropathy


 
07-06-2014, 10:04 PM   #1
kotite4ever
 
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Humira and peripheral neuropathy

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
07-06-2014, 10:30 PM   #2
nogutsnoglory
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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.
07-07-2014, 03:19 AM   #3
M West
 
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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
07-07-2014, 05:43 AM   #4
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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.
07-07-2014, 05:46 AM   #5
kotite4ever
 
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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
07-07-2014, 05:59 AM   #6
M West
 
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Mine started right away. Small stabbing pains in both feet and now general numbness in both feet.

Miles
07-07-2014, 06:43 AM   #7
kotite4ever
 
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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.
07-07-2014, 07:03 AM   #8
M West
 
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I can deal with neuopathy as long as the gut goes into remission. Both, however are hard to handle.

have a good week.

Miles
07-07-2014, 07:49 AM   #9
nogutsnoglory
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I was on Humira for a short period of time so it didn't happen right away but very soon after.
07-07-2014, 11:37 AM   #10
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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
07-07-2014, 03:58 PM   #11
nogutsnoglory
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I have migraines but those are from fibromyalgia not Humira.
07-08-2014, 09:01 AM   #12
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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!!


07-08-2014, 09:10 AM   #13
kotite4ever
 
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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!
07-29-2014, 12:31 PM   #14
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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.
07-29-2014, 01:39 PM   #15
M West
 
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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
07-29-2014, 01:41 PM   #16
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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.
07-29-2014, 01:49 PM   #17
M West
 
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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
07-29-2014, 01:50 PM   #18
kotite4ever
 
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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
07-29-2014, 01:59 PM   #19
M West
 
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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
10-12-2014, 09:19 AM   #20
trebor-HI
 
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if OP is still tuned in...was wondering if your peripheral neurological issues ever subsided after ceasing humira.
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Trebor

diagnosed with Crohn's 2012
Apriso, buedesonide, imuran, prednisone, humira and methotrexate.
No surgeries, but hospitalized twice due to small bowel obstruction
10-12-2014, 02:48 PM   #21
kotite4ever
 
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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.
10-12-2014, 09:46 PM   #22
nogutsnoglory
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Mine never went away either
10-12-2014, 09:56 PM   #23
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Ugh...so sorry to hear that. For both of our sakes.
10-13-2014, 06:58 AM   #24
trebor-HI
 
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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
10-13-2014, 08:48 AM   #25
nogutsnoglory
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They were baffled by mine and couldn't make sense of it. I'm convinced humira kicked in my fibromyalgia and chronic fatigue.
10-13-2014, 09:27 AM   #26
kotite4ever
 
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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.
10-13-2014, 10:54 AM   #27
M West
 
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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
10-13-2014, 11:29 AM   #28
kotite4ever
 
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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.
10-13-2014, 12:02 PM   #29
M West
 
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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.
10-13-2014, 12:59 PM   #30
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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.
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