having BAD side effects from HUMIRA! help!►

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Regular Member

Date Joined Oct 2009
Total Posts : 76
   Posted 7/6/2010 9:20 PM (GMT -7)   
1) I started Humira on 3/2010 every 2 weeks and I started to notice RLS symptons about 6 weeks ago?  they get pretty bad at night and during the day my legs can experience a lot of weakness and numbness.  I went to a neurologist yesterday and he sent me to go get some bloodwork to start before we do any further testing.  Anyone here ever heard of Humira causing RLS or any other neurological problems?
2) I also noticed that scabs, bruises, cuts, etc. do NOT heal like they USUALLY do. (5-7 days)  >>>Now they take at least 2-6+ WEEKS just to heal.  I've literally had the smallest scab on my leg for almost 6 weeks now.  It just won't heal.  Its just a scab!  This Humira is really starting to scare me.  I mean what happens if I really do get an infection? or the flu? or i'm in a car accident or get a gun shot wound?  should I just buy one of those bubbles to live in?  and I was supposed to get reconstructive surgery on my knee this summer. (guess my ortho aint gonna touch me with his knife.) :(
FRUSTATED!!!  shakehead help.

Regular Member

Date Joined Jun 2010
Total Posts : 113
   Posted 7/7/2010 6:29 AM (GMT -7)   
I have the same thing!! Ok for the RLS it didn't even occur to me that it was the Humira since I am on so many other meds as well. My legs bother me at night, especially when I don't take anything to help me sleep (like ambian). And as for the bruising, I noticed that right after I started humira (bruising only though, and they seemed to last much longer than typical) and I spoke to my Dr who did blood work but said everything was normal. Well after about the 2 month mark I no longer get the bruising so that is good at least but it was weird. My side effects aren't bad enough to make me stop though...although now I strongly suspect that my hair is shedding a lot more than usual. We shall see.

Regular Member

Date Joined Nov 2003
Total Posts : 351
   Posted 7/7/2010 8:48 AM (GMT -7)   
Humira lowers immunity which I believe has an impact on the time it takes for wounds to heal. That's typical of one of these drugs I believe. I don't know about the other problem you are having but thought I'd chime in.

Regular Member

Date Joined Jul 2008
Total Posts : 384
   Posted 7/7/2010 9:07 AM (GMT -7)   
I am also experiencing the RLS, although I didn't attribute it to the Humira. I had it occasionally before but for the last month and a half, I have it every night. just this wierd tingly feeling that drives me up the wall!! I found that if I took a Klonopin (anti-anxiety) it would relax me enough to allow me to sleep, but that is worrying me because I would only take them occasionally and now I'm taking them nightly. My psych is gonna freak!

Please let me know what you find out...

I have also noticed the wounds taking longer to heal. Nothing extreme, but a small burn from popping oil took almost 3 weeks.

Does anyone know how long it take for Humira to leave your system if you stop taking it? Just curious...
Dx'd w/ Crohn's in 1979 at age 13. Bad flare 2008 but no health insurance so I dealt with it. Colonoscopy in July 2009 caused a perforated colon, emergency bowel resection. 2 fistula's, perianal and perivaginal.

Humira, probiotic, a multivitamin, calcium, magnesium, zinc, and fish oil. I also take Tramadol 50 mg and Klonopin (for anxiety) as needed.

Life may not be the party we hoped for, but while we are here we might as well dance!

Forum Moderator

Date Joined Nov 2003
Total Posts : 7122
   Posted 7/7/2010 11:04 AM (GMT -7)   
All the anti-TNF meds like Humira have shown to cause neurologic problems in some people. From the patient safety information for Humira:
"Nervous system problems. Signs and symptoms include numbness or tingling, problems with your vision, weakness in your arms or legs, and dizziness."
Moderator Crohn's Disease, IBS, and Osteoarthritis Forums
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, pulmonary hypertension, degenerative disc disease, asthma, severe allergy and a host of other medical problems.

Regular Member

Date Joined Apr 2010
Total Posts : 69
   Posted 7/7/2010 5:50 PM (GMT -7)   
I just started Humira... what's RLS?
Crohn's Disease. Diagnosed in 1997 at the age of 10.
Currently on: Monthly B-12 injections Purienithol (6MP), Calcium, Multi-Vitamin, Prilosec, just starting Humira
Was on: Prednisone, Remicade ( Allergic Reaction 2nd time around)

Forum Moderator

Date Joined Nov 2003
Total Posts : 7122
   Posted 7/7/2010 6:06 PM (GMT -7)   
RLS = Restless Leg Syndrome
Moderator Crohn's Disease, IBS, and Osteoarthritis Forums
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, pulmonary hypertension, degenerative disc disease, asthma, severe allergy and a host of other medical problems.

Regular Member

Date Joined Oct 2009
Total Posts : 76
   Posted 7/7/2010 7:38 PM (GMT -7)   
Thanks for all the responses! I know that HUMIRA lowers the immune system which makes it more difficult for the body to heal or fight infections, but this is some scary shiz! I mean its almost like pick your "poison". I keep thinking if a scab takes 6 weeks to heal and a bruise 3 weeks to heal then what the heck is going on inside me when I have my 4 cigarettes a day? I'm thinking CANCER here i come! (it only makes sense.) OK, i know i could stop smoking, but what really frightens me is if i flare up on this stuff, isn't that gonna prevent the walls of your intestinal lining from healing? anyone else follow my logic on this?

btw, the neurological side effects can also be from a combination from the HUMIRA and another one your current meds, so check with your doc. and as for RLS, and I'm not joking here, be careful with the pain killers and sleeping pills! (ADDICTION!) and FYI, google this if you don't believe me, but holistic treatments show sleepeing with a bar of soap in your bed HELPS with RLS. ;)

New Member

Date Joined Jul 2011
Total Posts : 1
   Posted 7/26/2011 8:47 PM (GMT -7)   
I understand this thread is pretty old, but I have been on Humira for about a year. I am not on many other medications, so I can say that it is the Humira that causes RLS and sleep problems. (Even though I am always tired). I have contacted the Humira drug company several times over the side effects I've been having. I too have had problems with small cuts and bruises healing correctly, I get sick and have headaches if I am in the sun too long, at the injection site I always have a raised-fevered rash after the shot and I "wrongly" took my injection one time when I felt a cold coming on. BIG MISTAKE. I was very close to going to the hospital, it was like the symptoms of a cold were amplified. I'm not sure this medication is worth the risk. Has anyone ever weened themselves off this??? What is the best way?

Veteran Member

Date Joined Feb 2011
Total Posts : 1059
   Posted 7/27/2011 7:39 AM (GMT -7)   
There is no need to do a slow reduction like there is with steroid withdrawal. I have just had to stop the Humira after 6 months as it has caused the myelin covering on the nerves in my body to be stripped off and it has left me in agony. It started 3 months after I started taking it and thought the initial joint/muscle/nerve pain was due to coming off pred but it got worse not better.

Saw my GI consultant last week and although he ideally wanted me to take it for 2 years I said I can't continue in this amount of pain, currently taking co-codamol, tramadol for pain and amitriptalyne (sorry spelling!) for nerve block and still in agony. It's hindering me at work and don't want to have to take more time off work, I love my job. He said that hopefully the CD has gone back into remission and will continue with the azathioprine for life. The azathioprine always kept the CD in remission previously but GI thought good idea to stop it as had been ok for 6 years. Bad move, worst flare I have ever had after stopping it for 7 months and took 4 1/2 months off work to get it settled again.

He also said that bottom line is that I have to live with this and quality of life at moment is rubbish, if CD settled and still ok in 2 months time then Humira has done it's job and got it into remission again. If not then will have to restart it, other issue is whether the nerve damage is permanent. Either way if need to restart Humira or if nerve damage doesn't go away will have to see Rheumy to get long term medication sorted.

Think you need to see your GI consultant and explain issues you're having. If CD symptoms under control then they may suggest coming off it and carry on with other medication to keep in remission. I wouldn't recommend doing anything until you have had the discussion, there are other options available.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

Veteran Member

Date Joined Feb 2007
Total Posts : 734
   Posted 7/27/2011 8:43 AM (GMT -7)   
Yes, I quit Humira because it caused Lupus, hepatis. Sorry, you are experiencing side effects. Take care

Regular Member

Date Joined Mar 2008
Total Posts : 176
   Posted 7/30/2011 10:12 AM (GMT -7)   
Stripey---If I were you, there's no way I'd go back on the Humira!!!

I was on Humira for 2 years, and it worked wonders for me. However, I began getting weird pains & numbness in one finger and in both feet. It kept progressing so my GI had me stop the Humira. I stopped it in Dec. 2010, and to this day I still have the constant numbness. I will never be able to go back on Humira again, and should probably avoid all TNFs. My GI doc, my primary care doc, and my neurologist ALL agree on this.

Not everyone experiences neurological problems---as a matter of fact, it's fairly rare---but for those that do, it's extremely risky to continue on that type of medication. My neurologist said that the anti-TNFs can do permanent damage to the spinal cord, which could of course put you in a wheel chair for life. No thanks!!

I've called the Humira manufacturer and spoke at length about neurological problems from it. They (the manufacturer & researchers) just don't know what the outcome is for those who've experienced that side effect. I was told by them that (1) it might get better, OR (2) it might stay the same, OR (3) it might get worse even though I'm no longer on it!!! They simply just don't know.

I sure hope you find something that works for you and does not bring you such serious side effects.

Good luck!
55 year old female;

Have had Crohn's of terminal ileum for 11 years. Small bowel resection (my first) on 7-30-09. Monthly B12 shots.

Had to STOP Humira on 1-2-11 due to neurological side effects (was on Humira for 2 years). Currently on no Crohn's meds. Allergic/hypersensitivity to Pentasa, Entocort, and 6-MP.

New Member

Date Joined May 2012
Total Posts : 2
   Posted 5/1/2012 6:39 PM (GMT -7)   
Hi all,

Just wondering if any of you who had neurological problems possibly from humira have since stopped humira and have had the symptoms resolve?

Thank you

Michelle :)

Veteran Member

Date Joined Apr 2007
Total Posts : 532
   Posted 5/2/2012 9:34 PM (GMT -7)   
I stopped humira in Sept 2011 due to worsening of numbness of legs and worsening back pain specifically for 3-4 days after my injection. Really severe with sitting but have to take sleeping pill at night to get any rest. I do have lower back arthritis and history of b12 deficiency with subacute combined degeneration of the spinal cord. It had improved significantly following intensive b12 therapy but after taking humira for 2 plus years the symptoms came back. The numbness and tingling has improved but not to the level I was before taking it. My Rheumy found it hard to believe it would cause neuro probs, and obviously does not know/believe in low b12 damage. Finally stopped it myself after he ordered MRI's galore. I kept telling him it was humira. Well the Crohn's came back and the arthritis symptoms worsened, now on methotrexate. But I'm glad I can finally sit on sofa without having to stand up every 5 min. I also take a long time to heal but also blame it on prednisone. I have been on 5 mg seems like forever.

New Member

Date Joined May 2012
Total Posts : 2
   Posted 5/2/2012 10:38 PM (GMT -7)   
Thank you very much for your reply tinglebell. It is amazing how little doctors know about nutrition and the importance of vitamins and lack of vitamins. I had low b12 levels and still had to demand that my GP give be a monthly shot. The only time they take notice of vitamin levels is if they are dangerously low and by then it's sometimes too late.

Regular Member

Date Joined Aug 2009
Total Posts : 90
   Posted 5/3/2012 9:49 PM (GMT -7)   
I am shocked at reading the neurological problems some of you are experiencing, I am so sorry to hear this!! Is it possible that Cimzia would be a better option? Humira and Remicade are very similar but my understanding is that Cimzia has some different ingredients. I wish you all the best and thank you for sharing this information.
27 F - Dx with Crohns in 7/2009. Currently on Humira, Imuran and Prednisone. Remicade caused drug-induced lupus. Dx 11/2009: Hemangiopericytoma tumor in/around spine. Dx 2010: Crohns Arthritis, Avascular Necrosis in both hips, bursitis in both hips, neuromas in back & foot. Currently being tested for Endometriosis.

Listen to your instincts and stand your ground.

God bless :)
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