having BAD side effects from HUMIRA! help!►

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.

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...

I just started Humira... what's RLS?

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. ;)

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.

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!

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.

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.