I will just prelude this, because it is quite a long post, to let you know that I have posted this to provide some information for those interested – the issues seem to be resolved for me thankfully 
so don’t feel you need to read this unless you are interested.
I had been taking Humira since 2012, and just recently switched to Cimzia (April 2018). After I stopped Humira, some unusual neurological symptoms, which had not been connected to either my PsA or the Humira by either me or my Rheumatologist, suddenly stopped (after having them for nearly two years). We have very little info to go on (my first appointment with a neurologist was scheduled 3 weeks after ceasing Humira), so this could be a coincidence, however as TNF blockers are known to cause neurological effects in rare cases, it seems more likely they are linked, and this was my Rheumy’s opinion. Four months on, things are going fantastically on the Cimzia, I feel better than I have for years, and there has not been a hint of the neurological symptoms returning.
As I hadn’t connected the symptoms to either the PsA or the Humira, I really didn’t mention them much here on the forum, but now it seems they are connected, I thought it would be good to provide brief info here for others, particularly because the symptoms, speed of onset (slow), and severity (mild) are really not something I’ve found documented in the literature elsewhere (which seems to be mostly about sudden-onset MS-style neurological symptoms), and whilst my experience may be rare, it seems likely I am not the only one. Perhaps the lack of severity is why it is not something that seems to have case studies etc that I can find in the medical literature.
What was really significant to me, was that investigations of the neurological side effects of TNF blockers published to date have indicated that if you get those neurological effects, they are probably due to the TNF blocking action, and TNF blockers as a whole class are out. Clearly that is not my experience, and the Rheumatologist was not surprised by this, explaining that they still really aren’t at all sure what is causing the neurological effects, and that each different biologic molecule has a different immunogenicity profile – my understanding this is that it is likely that the neurological affects were somehow being caused by my body rejecting the biologic (ie developing antibodies to it).
For me, it has been a two-year saga of deteriorating health, and as with many neurological things, the spectrum of symptoms is very broad and likely to be unique to each person, however I thought I’d give you a bit of idea of my experience in case it is helpful to anyone. Mostly, I seemed to get symptoms in flares or exacerbations that would last for 2-3 months, then I would get 2-3 months where they would abate and though I’d have them here or there, and feel a bit unwell, they’d not interfere with my life too much. It’s important to note that I wasn’t having them all at the same time, they would come in groups, and in a general sense progressed from initial onset of fatigue, ear, jaw, side of face pain and headaches, through to tingling feet then hands, then co-ordination and balance problems. I’ve done bit of a list below of symptoms that all seemed to be linked.
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Severe sleepiness and fatigue – different to that I had personally had with PsA, not related to joint flares, very easy to go to sleep, stay asleep, and very deep sleep. Needing 11-14 hours per day. Fell asleep in stop-start traffic in the car on one occasion, and got myself hooked on nicotine gum to keep me awake when driving after that!
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Severe left-sided ear and jaw pain, with pain wrapping around the side of my face and top of my head, hard to open mouth, sensation of crawling inside my ear drum.
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Headaches lasting for 3-5 days, usually left sided, sometimes with the jaw pain but sometimes without it at all, always present (ie on waking in the morning, or if woken at night), varying in severity over the 3-5 days from just a minor niggle and no medication needed to moderate, requiring panadeine (weak codeine medication) to remain operational.
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One-sided aural migraine (this was a once-off when the ear and jaw was at it’s worst)
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Tingling in feet at night, progressing in later flares to tingling in feet during the day as well and occasional tingling in hands
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Balance and co-ordination issues, essentially feeling like I was very drunk, including walking into door frames, and dropping objects. At its worst I would feel like I was slurring when speaking.
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Sudden, severe fatigue and exacerbation of the balance and co-ordination problems on getting a bit hot (ie having a hot shower or entering a warm room from a cool outside).
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Nausea, constipation, weight loss.
Can you believe, that not only do I now need to go on a diet, but I’m trying to figure out what to do with all my extra time (that I am not asleep) – it feels a bit uncomfortable, in an odd way, but I am so grateful to be feeling better.
I should also mention that although my bloods were never consistently out of range, they would often have one or two things out of range, my white blood cells were generally a bit low, and my liver markers were often a bit out, however all of these things looked great on the post Cimzia blood test.
Finally, if anyone does know of any published research or investigations that discuss these sorts of slow-onset neurological symptoms that resolved after medication being stopped or changed, could you post a link? Though hopefully I won’t have to deal with this again, I’d be curious if it is something that there is information out there on.
