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Living with Psoriatic Arthritis (PsA)

Humira question/numbness


#1

So I started Humira in April and am very happy with pain levels. However, a few days ago the left side of my face is numb and tingly. I Google’s and saw a post that someone else had this happen but now I can’t find that post. Has this happened to anyone here, if so, is it temporary??


#2

The discussion here on the General Discussion tab. Title is ‘Humira and Rare Side Effects.’


#3

I think @Jen75 would probably agree (though of course that is her call) that neurological side effects with Humira are quite rare.

However tingling sensations, I’m not quite so sure about the numbness, do seem to be fairly common with PsA as inflammation in joints and tendons can compress nerves. So I’m wondering whether your jaw might be affected by PsA … I guess that this is something you need to address with your rheumy, but, meanwhile, I can say that tingling and burning sensations are very familiar to me as are ‘electric shock’ type sensations in my feet, ankles and head. The head (forehead), is difficult to understand as I do not believe I have any joints there lol! But it has been going on for years and hasn’t got any worse, in fact it has lessened over time.


#4

Yep - have to agree with Sybil, that neurological side effects with Humira are extremely rare. As I discovered, this doesn’t mean they can’t happen, but certainly it is very unlikely so other things should be ruled out before it is even considered.

I would go to your GP and talk to them if you have a numb and tingly face - there are lots of things that can cause this, many of them pretty benign, but some that can be quite nasty, so you really need to get it evaluated. Make sure before you go you write down any patterns - if it happens when your arthritis is in a bit of a flare or has no connection, if there is any other symptom you’ve noticed at the same time, if it happens in times of stress etc.

I should also say that many of us get numb / tingly bits and pieces (including me) as a part of our PsA, just as Sybil mentioned. For example, it wasn’t uncommon for my feet to go numb and / or tingly when I was riding on a scooter or riding horses, if there was a bit of inflammation in my ankle (seems like keeping the ankle at a consistent angle was causing this). Lots of our members do get restless legs or tingling feet at night too, and it is known that arthritis can lead to peripheral neuropathy.

Everything I have read suggests that in most cases, if there is a neuropathy caused by the biologics, it stops shortly after the medication is stopped. In very rare cases, where there was already a genetic pre-disposition to MS, it seems that the onset of MS in a person has been coincident with the start of biologic medication. They aren’t clear that it increases risk for MS, but that it can precipitate the onset. Without any family history of MS, this would be extremely unlikely, and bear in mind here that of the hundreds of thousands of people taking biologics worldwide, this is so rare that the papers written on it are generally case studies on individual people. Part of the reason they don’t understand it is because they don’t tend to get enough people, even in really large studies, to provide statistical significance in any of their analyses.

Do see your GP though, neurological stuff can take a long time to sort out, for me it was two years, and I really hit upon the answer by accident. I really should have taken my new symptoms more seriously at the start, (as should the neurologist who rejected my referral!) and I might have been able to shorten that time.


#5

My brother had MS. I’m petrified to go to the doctor.


#6

Oh @Vettegirl, I’m so sorry to hear, and I can really understand how you must feel petrified. I was terrified once the balance and coordination problems started to kick in, not sure if I was going crazy, and certainly started to worry about MS, even though I have no family history.

I know it is scary, but you need to go to the doc. It is early days, and if there is anything to it, then the earlier you catch it the better. It is still very rare, so most likely will not be Humira induced neurological issues, but start the process and get yourself reassured, or identify if there is a problem. Make sure you tell the doc about your brother’s MS, as well as any other symptoms.

Do you have someone to go with you? That can help me when I feel very anxious. I also write a list - sometimes very detailed. Wish I could come over there, give you a hug, and take you to the doc myself! :hugs:


#7

Vettegirl, my Mum had MS very badly. Noticing your age group on your profile, my instinct is to suggest that you do not worry unduly. I think (though am not 100% sure) that MS gets increasingly unlikely as the years go by.

Prior to starting Humira, I was told to report any bilateral tingling due to this family history. I don’t know how solid that advice was, but I hope it reassures you. I’ve been taking Humira for 4 years now and no doctors so far have seemed concerned about the random tingling etc. that seems to occur so often with PsA.

However, I so agree with Jen that you deserve to have your concerns addressed so definitely run it all by your rheumy.


#8

Thanks My rheumatology nurse seemed to have no clue about numbness or tingling…even though it is mentioned in the Humira website.

Went to my family doctor today, he ruled out a stroke which I didn’t think was the issue since I have no other stroke symptoms. He is checking to see if my insurance will approve an MRI so they can look at my brain.

I really detest doctors as much as I detest this illness! :neutral_face:


#9

Had the MRI, not looking good. I have an appointment with a neurologist next month.

Pretty sure I hit my very first trifecta…Type 2 diabetes, PSA, and now MS. Woo hoo :unamused:


#10

Oh @Vettegirl!

I was just thinking about you yesterday, I am sorry, what a bum run :pensive: (yes that is a crude Australianism - as in a run of bad luck).

I hope if they’ve seen lesions on the MRI they are the type that goes away :crossed_fingers::crossed_fingers:. I’m guessing you’ve stopped the Humira now, but now it’s hurry up and wait for the neurologist… I hate the waiting

Thinking of you and sending cyber hugs :hugs: :hugs:


#11

Thanks Jen.

Yep stopped the humira, which for the record was working :slightly_frowning_face:. Now waiting for my joints to notice they aren’t getting their “be nice to Mindi juice”. :smirk:


#12

Yes… not fun knowing that’s coming :frowning:

Have you some rescue steroids? They might be useful and not likely to cause any problems with inflammatory nerve thingies.

Also there was a discussion - maybe a year? ago - for someone with PsA and MS, there is a new-generation med that can be used for both. Give it a search, and if you can’t find it let us know, I think maybe @tntlamb knew what it was. I know I’m probably getting ahead of things on your behalf :joy::joy: - I always find comfort in information that allows me to know there is hope for the path ahead, even if the diagnosis is still entirely uncertain.

I hope you have the same experience I did - the symptoms started to slowly resolve after about two weeks off Humira, after about 4 weeks I was really becoming sure they were connected and after about 8 weeks there was really nothing left. Bear in mind that though I don’t have a family history of MS, my symptoms lasted for nearly 2 years before we stopped Humira, and still went away for me - I’m glad you got any issues early and hope they do for you too :hugs:


#13

Hey @Vettegirl, just checking in to see how you are?


#14

So far so good. Stopped the Humira might be a month now. Next Friday is Rheumatology appt and Sept 12 is the neurologist.

Face is still numb. Trying to convince myself that its going away…wishful thinking tho.

Thanks for asking


#15

So very sorry to read what you have been going through!! Very scary for you!!! Unfortunately I am unable to add any useful information for you, but just wanted to wish you all the very best with both of your upcoming appointments and for a speedy recovery too!!!
Big hugs!!!


#16

Sorry to hear face is still numb, but I’m hoping so far so good means you don’t have any other new symptoms :crossed_fingers:

I noticed improvements after about 2-3weeks, but it kept getter better for about three months (I really had no idea how sick I was - old boiling frog analogy).

Just know we are thinking of you :two_hearts::two_hearts:


#17

Update…2 months off the humira, numbness is fading…slowly. Had my appointment with the neurologist yesterday. Basically, he said there are definitely abnormalities in my MRI but without anything to compare it with he felt I was just having an adverse reaction to the humira. He asked a bunch of questions and did a few coordination tests which I passed. Going to schedule another MRI in 5 months so he can see if any changes have occurred.

So for the time being I’m taking that as a positive outcome!

One day at a time…


#18

Hi Vettegirl, steady, but good news by the sound of it. What a challenge this has been! I still have not had some problems changing to Cimzia, however you and your neurologist and rheumy will have to get together to decide what to do next. I’m am pleased to hear the it sounds positive :slight_smile:


#19

That is good news!

Numbness comes up from time to time in posts, usually just a passing mention, but clearly yours has been a little more worrying. You must be feeling cautiously relieved right now.

I often find that bits and pieces go a bit numb, my right big toe lacks sensation much of the time and I kind of expect it to be useless as a result, yet it doesn’t affect my gait or balance. These days my right arm / hand feels numb sometimes, I get a little anxious and make a fist, flex fingers, lift something … it all works okay. So I wonder whether that’s associated with Humira or with PsA …


#20

I think everyone’s experience is their own, but certainly when mine was related to Humira it caused all sorts of problems with balance and gait.

I have had my feet go numb before due to PsA, the first time was from inflammation in my back, my balance and gait were fine, but I did lose power in my legs. After that it happened on and off when I was exercising - worst when horse riding - seems the inflammation in my ankles must have been flaring up and causing it, as it was usually temporary (ie gone within hours) and related to exercise.

Parts of my toes are usually numb, but it doesn’t create any issues, and they are not so numb I don’t notice injuries (and I know I’m not diabetic), so I just ignore that.