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


 
10-19-2014, 10:32 PM   #31
Miss Underestimated
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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.


Take the XanaX.
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*Sick since 1987; managed on my own;
*diagnosed 2008 when I underwent emergency surgery;
*various meds and tests 2008-2012,
*Jan 2012-present, Humira. No symptoms, but scopes indicated disease.
*6MP for all of 2013.
*2014 &2015 complete mucosal healing.

**Staying on Humira for maintenance**

The statistics I see so far for my situation seem pretty good. There ARE long term statistics for the Anti-TNF drug treatments now. I'm here to make them longER.
10-20-2014, 02:20 AM   #32
kotite4ever
 
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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!
10-28-2014, 03:40 AM   #33
Cirberus
 
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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.
10-28-2014, 09:09 AM   #34
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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.
11-13-2015, 10:50 AM   #35
momofzach
 
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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...
11-13-2015, 10:57 AM   #36
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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.
11-13-2015, 11:03 AM   #37
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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!
12-02-2015, 05:28 PM   #38
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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)?
12-02-2015, 05:50 PM   #39
momofzach
 
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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
12-02-2015, 06:32 PM   #40
sweeve
 
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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!
12-02-2015, 08:23 PM   #41
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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!
12-03-2015, 12:28 AM   #42
sweeve
 
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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?
12-03-2015, 06:48 AM   #43
momofzach
 
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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
12-07-2015, 04:10 PM   #44
sweeve
 
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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.
12-08-2015, 06:50 AM   #45
momofzach
 
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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.
12-08-2015, 04:41 PM   #46
sweeve
 
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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.
12-08-2015, 05:04 PM   #47
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Thanks again, I will definitely keep you posted
12-11-2015, 11:30 AM   #48
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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.
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 .
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DX Crohn's 1971
Crohn's Surgeries 1971, 1974, 1984x2, 1993, 2007,2016
11 Kidney Stones from 1996 due to resections
All the standard drugs/advice from the 70's 80's 90s
Now: Lyrica & Cymbalta (Neuropathy)
Fish Oil, B12 injection monthly
Dec 21 2011 started Remicade
February 2012 off of Pentase!
Nov 2014 Back on Imuran
Jan 2015 off Remicade
Mar 2015 on Humira
June 2016 on cimzia
Dx short Bowel July 2017
10-01-2017, 11:49 AM   #49
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
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.
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diagnosed with Crohn's 2012
Apriso, buedesonide, imuran, prednisone, humira and methotrexate.
No surgeries, but hospitalized twice due to small bowel obstruction
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