Biologic induced neuropathy

I moved onto the biologic drugs in August 2013 and since then, I have had symptoms of neuropathy. My rheumatologist steadfastly has stuck to her line that the 2 anti TNFs I have tried are not linked with neuropathy. I'm not trying to be awkward but the official sites for the drugs do acknowledge an association. In my last appt, she suggested sending me for tests but I haven't heard any more on this. I must chase this up actually!

If my nerve symptoms are due to the medications, I'm going to be in a horrendous pickle. I sustained a fair amount of joint damage in my feet, ankles, shoulders and jaw in the initial years of my RA treatment. I've recently had scans of my jaw and feet and they've shown barely any joint degeneration since 2013 which proves that my current medication combination is working very well. However, I am really suffering with this nerve pain. I can't take amitriptlyine and I'm not sure about the other nerve drugs but I will make a GP appt to discuss this.

Has anyone else experienced neuropathy symptoms on biologic drugs? How did you/do you manage this?

Thank you in advance.

14 Replies

  • I am on MTX and Humira and have been experiencing extremely hot hands/feet since on MTX. MTX is also linked to neuropathy.

  • Do you take anything to manage these symptoms? I wonder if it's the combination of MTX and humira. I had the same when I was on MTX and cimzia.

  • No, I do not. Do I talk to rheumy, neuro or GP? I am wondering the same. Of course, my thirst for knowledge has led me to know that these feeling are not normal. Just like chalking up enough pain to want to die to old age at 30! I just thought that everybody felt this way!

  • This may change but so far I've only been offered DMARDs so no experience of Biologic induced neuropathy. Have just posted about my present neuro pain flare but I wanted to just flag up that neuropathic pain goes with all the rheumatic diseases so your rheumy might well be right to not let your present drug regime take the flack. It is very hard for anyone to know this of course but as someone who was taken off two DMARDs for this reason, only to find that the neuropathic pain still comes and goes in flare form - horrendous presently - I would be cautious about potentially jeopardising a drug regime which appears to be working well for your joints.

    You probably know this about me but just to repeat for others who may not have read my posts - the neuropathy has been the worst overall symptom for me. This is partly because of the widespread and awful nature of the pain but also psychologically because it is Invisible, hasn't shown up with swollen, fractured feeling joints and tendons for a few years now and cant be seen by x-Ray. Fortunately it does show up in my ESR which had been very reliable for me as a marker and as proof it's not all in my head to date.

    My rheumy is happy just to attribute it my RA and would not to investigate. But I wasn't happy to leave it to deteriorate and Amitriptyline stopped working for me after 3 years, Gaberpentin sent me nuts and Duloxetine did nothing. You might be different in your response as many find these drugs really help. Intensive neuro investigations have shown nothing either.

    As I'm sure you already know the most common causes of small fiber sensory neuropathy (my formal diagnosis) and other types of neuropathy are diabetes, pernicious anaemia, drug reactions (chemo), alcoholism, MS and coeliacs. In rheumatic diseases it is most closely associated with Lupus, Sjogrens and Vasculitis but sometimes also with RA.

  • Thanks for the reply. I am not overly keen on having lots of tests, if it can be avoided. I googled 'nerve conduction test' and it doesn't sound like much fun.

    I'd rather deal with this pain than my joints continue to become deformed. That said, it's not a fun trade off, especially because the years of uncontrolled RA has left me with excruciating pain and I am still getting the odd flare despite my medications. :(

  • I understand your thinking Crashdoll. I haven't been well for ages but suspect the very bad lumbar puncture in January precipated a much worse run of poor health somehow. It sounds like you have quite enough to deal with and often these investigations get us nowhere anyway. All they seem to do with nerve pain is offer the symptomatic treatments such as gaberpentin. Perhaps this would be worth a try? To

  • I've only had nerve conduction test on my arms crashdoll, to test for carpal tunnel & whilst it's an odd experience having no control of your reactions it doesn't hurt, I don't recall even the EMG being uncomfortable. I do remember when the neuro guy explained what it entailed, (it didn't help that the procedure was explained in Spanish & they tell it how it is), especially the needles bit thinking I didn't like the sound of it but it was no biggie, honestly, I concentrated on hoping it would prove I needed the CT release!

    This is my only experience of neuropathy personally, apart from the end of my big toe which is so inconsequential!

  • I was taken off Humira immediately and sent for an MRI scan after my opthamologist noticed nerve abnormalities in one of my eyes. It turned out there was no sign of nerve damage though they couldn't explain the abnormalities but I wasn't allowed back on Humira, I was put on Infliximab instead. I suspect like anything like this it is all down to the consultants and doctors and what their personal beliefs are. xx

  • Thank you for the reply. How are you faring on the infliximab?

  • I always thought that the neurological side effects that were associated with biologics were central nervous system problems (demyelinating disease - like MS), rather than the type of peripheral nervous system problems that can result in nerve pain. Has anyone done any of the neurological examination tests on you? (checking reflexes, etc). If they are all normal then I would guess there isn't any serious neuro disease, or at least nothing that a neurologist would treat, though I'm not trying to minimise your problems with nerve pain - I know personally how bad that can get.

  • Oh you know, I think you're right. I guess that proves that a little knowledge is only useful if you apply it correctly.

    No, not minimising at all, I understand what you're saying. As a social worker, I come across many people who have serious, debilitating neurological diseases and what they go through is heartbreaking and agonising - there is no comparison. For me, this is a good point to stop and reflect and be thankful because things could be so much worse and I am managing my pain and my disease quite well.

  • Hi I am on the same as you and got the same as you I have been put on a drug called gabapentin it as helped me the last year I don't get as much pain its for neruopathy pain but the pain is always with me I can't do without the gabapentin if I miss a dose I know about it I have three doses a day hope this helps life is a lot better since I have been no the diologic and I don't known what I do without it karen

  • I was given Enbrel and had to come off that because of sight reaction. I was then given humira and had to come off that because of low blood count I was the same time a lump appeared behind my right ear. it has taken a month to godown and I am left with severe pain and pins and needles and this what you mean?

  • Hei crashdoll, I´m in the exact same situation as you, I have been treated with Remsima, then I experienced neuropathy symptoms all over my body. it stings, sticks and burns all over his body. It is only now that the doctor has started to take me seriously. I just want to know how you are doing and if you are in any kind of treatment?

    Best regards, Monica

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