Neurological symptoms on humira

[Nikki31uk]

I've been having various neurological problems recently. At rheumatology I saw the clinical nurse specialist who was concerned the symptoms could be related to humira and consultant agreed. Told to stop taking humira until I see neurologist but that's not til Sept. I don't think I can cope being on no treatment, I'm already really stiff and in pain. Anyone else experienced similar. Thanks

[PFKAAde]

Hi Nikki31uk

Do you mind saying a bit more about what type of neurological symptoms you’ve been experiencing? It covers quite a wide spectrum of possible symptoms / conditions / causes.

I’ve been on Humira for some years but have never knowingly had any side-effects from it. Did the nurse or consultant say much about what they were concerned with?

Have they left you on nothing at the moment? Can you contact them easily if your symptoms worsen?

Sorry, lots of questions but September does seem a long time to wait if you have active inflammation and aren’t being treated.

🙏🏻

[Nikki31uk in reply to PFKAAde]

Numbness, tingling, trouble walking, clumsiness, extreme tiredness, balance and vision problems and lots of pain. These are the main ones I've been experiencing. They just told me that there was evidence of a link between humira and neurological symptoms. Yes they have left me on nothing. My next appt at rheumatology is not until Jan but they did say they'd bring that forward. They are going to try and get me in to see neurologist earlier.

[PFKAAde in reply to Nikki31uk]

That’s interesting, I could tick a few of those symptoms off myself but in my case tbere is a mechanical explanation (disc / spinal cord problems).

Thing is with these type of symptoms I would always associate them with my back problems and would never have considered Humira as a possible cause.

Still think it’s slightly odd they are leaving you so long. Have you already been through lots of DMARDs (like MTX, leflunomide etc)?

I’m wondering why you aren’t at least on one of them...

[Nikki31uk in reply to PFKAAde]

I have spine and neck problems too and have always put symptoms down to that too. Been on lots of dmards but they don't seem to help. I can't believe they've taken me off treatment without a plan or appointment already in place. They phoned after the end of clinic and just told me to stop treatment

[PFKAAde in reply to Nikki31uk]

Hmm, it’s tricky knowing what causes what sometimes!

Can you call them back and tell them you’re concerned about not having any kind of treatment plan in place for potentially months?

Even if they say that you can go in for a steroid shot every now and then it would be something. Or dare I say a course of oral pred.

[Staticoak in reply to Nikki31uk]

Can I ask what became of your issue? I just started Humira, and I'm having the same issues. Thank you

[Nikki31uk in reply to Staticoak]

Hi I saw a neurologist who quite frankly was useless and said I may have functional neurological disorder. He gave me 2 websites to read and that was it. Discharged. However since that time I have been fighting to go back on treatment and have been discharged from rheumatology by new consultant back to gp. I am now requesting a second opinion as don't believe I have fnd and believe the label has badly affected my treatment from rheumatology. I have complained but PALS are no help at all. So basically after being under rheumatology for over 15 years I have been left with no treatment and left to manage on my own. I hope you have a better outcome than me x

[Deejojo]

I was on humira for 5 months just recently I started getting really bad anxiety with it so had to stop it what sort of symptoms are u getting please

[Nikki31uk in reply to Deejojo]

Numbness, tingling, trouble walking, clumsiness, extreme tiredness, balance and vision problems and lots of pain. These are the main ones I've been experiencing

[Deejojo in reply to Nikki31uk]

I had the numbness aswell Hun x

[Familyguy in reply to Deejojo]

I had severe anxiety which evenually manifested into a multitude of emotional / psycholigical issues along with a lot of neurological issues.

I too stopped the Humira and things went back to normal.

I wouldn't touch another biological with a bargepole their is no way I would risk my sanity ever again.

I don't take any medication at all now I'm managing just fine.

[bee54]

I was on Humira and had to be taken off it as it severely compromised my immune system and I was constantly ill. In the end I had to give up work as well as my health got so unreliable. My rheumatologist told me that around 30% of patients experience bad side effects from Humira.

I am now on Abatacept and even now my health is still extremely unreliable and I get days when I am so fatigued I literally can't get out of bed. Consequently we are unable to make firm plans for anything which is very frustrating. Very good pain control though.

Interesting Deejojo that you get really bad anxiety - I still do. There seems to be nothing they can identify. How do you cope with it?

[Deejojo in reply to bee54]

I got apps on my

Phone 📱 and also learnt deep breathing hun xx

[Stynk]

Hi. I had similar so they said no further tnf. Now on Rituximab And managing ok. Still working albeit four days a week and two days from home but working!

[bee54 in reply to Stynk]

Hi Stynk - Thank you for replying, I'm glad it's not just me.

Did you find the fatigue/extreme tiredness episodes were pretty random? Often I can be absolutely fine in the morning, even, and then by teatime can't even sit up to watch TV.

Other times I can identify a potential cause - maybe I went to something, a gallery opening or a concert or something with my husband, and therefore came in contact with lots of other people with all their various bugs that wouldn't affect "normal" people with a fully functioning immune system.

How long did you find they lasted? Mine can be anything from half a day to three days ...

[Stynk in reply to bee54]

I wish I could say. I still get fatigue which can be random or caused by doing too much. Having Wednesday as my rest day and being disciplined about only doing things for myself that day has really helped with the balance. It will even out. I also was wrested for ms and am reviewed each year due to optic neuritis and some white matter lesions on mris. So far spinal taps are clear. There are lots of drug options. The waiting and wondering if it will Work is the worst. Try and get a cancellation so you don’t have to wonder for the summer.

[karilynn85]

I do know that TNF inhibitors can cause MS-like symptoms. It's rare, I believe, but it does happen. In EXTREMELY rare cases, TNF inhibitors have caused MS. I say this not to frighten you, but you really should listen to their advice to stop the medication.

I have neuropathy (developed before I ever took an RA drug) and my rheumatologist refused to put me on Humira because of the possibility for neurological side effects. However, she put me on Enbrel. The Enbrel has put my RA into remission, but I do think my neuropathy is worsening.

I feel for you, I really do. I was tested for MS a couple of years back with a brain MRI and they didn't find any lesions. I believe my neuropathy stems from some kind of autoimmune pathology and I wouldn't be shocked if I were to be diagnosed with MS in the future.

All that being said, my neurological issues started before I ever touched an RA drug, but I do believe biologics can manifest into neurological conditions if a person if somehow predisposed for one. I also believe they worsen previous neurological symptoms. People with MS can't touch biologics, so there is some reason for that.