Spondylitis Association of America

peripheral neuropathy

Posted By: nsheth

peripheral neuropathy - 05/18/18 12:50 AM

first post here.
I have been diagnose with seronegative spondyloarthropathy ( aka ankylosing spondylitis) for over 19 years. ( half of my life) I have been taking humira intermittently for 6 years. I have been feeling better with joint pain but last few months, i started getting PERIPHERAL NEUROPATHY ( tingling and numbness and pain in feets and leg with weakness) s/s and getting worse at night.

looking online and its one of the side effects of HUMIRA. Anyone else had that
Posted By: Winston

Re: peripheral neuropathy - 05/18/18 08:04 PM

I've not had neuropathy, but I have had neurologic symptoms while on a different biologic. My rheumatologist sent me to a neurologist to make sure it was not a side effect of my medication. In some very rare cases, biologic therapy has been linked to an MS-like demyelinating syndrome. After a brain scan, some nerve conduction tests, and bloodwork, the neurologist concluded that my symptoms were attributable to Vitamin B12 deficiency, which is also common in people with SpA. So be careful not to jump to the conclusion that it's a medication side effect. Make them check your B12 and other electrolytes.
Posted By: nsheth

Re: peripheral neuropathy - 05/20/18 02:22 AM

thanks for your reply. Last time i checked vitamin b12 was normal but will start some supplement. I was on keto diet for a while that may have reduce my vitamin b12 level. I am also seeing my rheumatologist and will see neurologist for examining neuropathy.
Posted By: KarenB

Re: peripheral neuropathy - 05/23/18 11:54 AM

I have Ankylosing Spondylitis and after years on Remicade (which I loved and felt so good on) I was dx'd with MS also! Taken off Remicade immediately. I have some neuropathy, but not too bad at this time. My husband has neuropathy very bad from degenerative disk disease. He has been on several meds for it but nothing has helped him. He had surgeries for the DDD, that kept him out of a wheelchair, but not much help. He had let it go on too long before doing surgery. The nerve damage was already done. So here we are in "the prime of our lives" on disability! We do alright, but sure not where we thought we would be!
Posted By: nsheth

Re: peripheral neuropathy - 05/25/18 03:18 PM

KarenB,
Thanks for sharing. I am glad that neuropathy is not that bad for you. Humira made such a big difference for me and I can not imagine how worse i could have had without it. We just have to stay strong.

How did they diagnose your MS or what were first signs? if you don't mind sharing. This neuropathy and feeling hot flashes onset have me worried.
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