I searched here and everywhere on balance problems with PSA and/or Humira.
Found some info. I have suddenly started having dizziness and balance issues. I got up twice the other night and fell onto the other sofa on the other side of the room.
I saw some say Humira may cause it. If anyone has experienced that related to Humira, did it come on slowly or as soon as you started it?
I read that PSA can get into your ears and create an issue. Hate to hear that, I don’t need any new problems. Sometimes I get very dizzy when I lay down now.
I don’t take any meds that cause orthostatic hypotension. I have to stand slowly now and make sure my feet are under me. But, we all stand up slowly, don’t we.
Update on pain - I have moved my next rheumy appointment up to a month sooner. I feel like I am in far too much pain on the Humira. He told me that if it got worse, or didn’t get better, we would make a change. I get my second dose of the vaccine tomorrow.
Sorry to hear about your balance problems. Funny you mentioning it, had serious balance problems in the past leading to syncope and hospital recovery in the past in a period was off mtxt and doctors attributed it to cervical inflammation, gave me a pill to take for a week or so and things got better, but I seem to have balance problems and dizzyiness from time to time now. Of course at the moment am once again off mtxt due to stop of a month or two during my vaccine procedure. I must say that my balance has never been the hottest my whole life, always attributed it to being too tall and needing compensation from lying or sitting and standing for that reason. Probably stupid hypothesis. certainly ear inflammation may be a possibility from what I read, at the moment am not moving too much, feel weak as a cat, and lungs are not optimal. My husband says he has not noticed me drinking too much, are you sure you are not dehydrated ? I hope you will have the best of luck with investigation and therapies,
Sounds like you might have already found my post on this from 2018 - if not I’ve copied and pasted the link below, as there is a lot in there about unusual side effects I experienced on humira including balance. I had been on it successfully for over 3 years before any of those symptoms started - I’d do things like get up in the night to go to the toilet and despite being able to see the doorway clearly I’d walk into the wall. Balance though was one of the last in a whole constellation of symptoms indicating a problem.
Doesn’t sound like you have lots of other symptoms though, so maybe it is isolated to a balance problem?
Have you had vertigo before? Is it possibly linked to that? That can be an easy fix with the
Epley Maneuver - if you have trouble performing it yourself from YouTube instructions, you can see a physiotherapist to help.
Hope you get it solved soon, and sounds like it is time to move on from Humira anyway, glad you’ve been able to get your appointment moved up.
I can’t speak to possible medication side effect as I did not have such issues while on Humira.
It is my understanding that it is definitely possible to develop both hearing and balance problems from PsA (citation below).
I had a sudden onset of vertigo that gave way to dizziness. While the vertigo/dizziness eventually subsided over of a couple weeks, I was left with tinnitus and high frequency sensorineural hearing loss (SNHL). The ENT I saw thought it was likely autoimmune. I didn’t really realize the full extent of my hearing loss until I was tested. I have been fortunate that the vertigo/dizziness has not recurred nor have I suffered any further hearing loss. But I now wear hearings aids & get regular hearing exams to monitor the situation.
I would suggest you see an ENT, let them know you have PsA, and have them evaluate you.
I am sorry to hear that Humira is not working for you. I only had marginal success with it but eventually ended up failing Humira completely. I hope your next medication brings you relief. Good luck.
I’ll be having my hearing tested next week. I suspect that it’s autoimmune related. Why? Sudden onset, then some recovery, all in the midst of the worst and most extensive flare I’ve had in many many years.
I’m sorry that you’re dealing with this, but it’s good that you’re on top of it. How has your experience been with hearing aids so far?
It is sobering to see any progression or new manifestations of PsA, the hearing issue is news to me. Maybe it too will come and go with flares rather than be permanent. How can they prove the cause of the hearing damage?
In my case, the question is whether it’s related to the psoriatic arthritis, or whether it is related to having had covid. Apparently there is some question in literature as to whether covid can cause hearing problems, tinnitus, etc. You figure if it can affect your sense of smell and your sense of taste, and can certainly affect your brain, why couldn’t it affect your ears?
In my case, this is all pre-COVID. Sudden onset of the vertigo/dizziness not attributable to any changes in medications. No signs of any infection. The hearing loss was sudden. I suffered High Frequency SNHL which is consistent with what studies have found in folks with PsA. So there isn’t proof of causation, just process of elimination. Statistical analysis shows notably higher incidence of these problems in PsA patients versus control groups. In the absence of other explanations, PsA seems the likely culprit for me.
As I mentioned before, I didn’t initially realize the extent of my hearing loss. For example, I was no longer able to hear the doorbell throughout the house. I didn’t hear the beeping of the microwave and such things unless I was standing nearby. And I didn’t realize that I was actually having trouble with understanding speech in noisy environments. I came to realize that I was using context and found myself watching people intently as they spoke. The hearing test quantified things. My hearing loss is permanent but no so severe.
No new episodes. I don’t have any residual or recurring balance issues. It has been a few years and there has not been any further progression of hearing loss. My current biologic (Cimzia) is working well for me. I have not had any ‘major’ flares in some time. I get annual hearing tests just to monitor the situation.
When I was fitted with the hearing aids, it was a notable improvement. They are quite small & comfortable enough that I actually forget I am wearing them. They only amplify the higher part of the audio spectrum where I am deficient. The little rubber domes that fit into the ear canal are perforated so as not to obstruct the rest of the audio spectrum. I can bump up or down the gain with the touch of a button. I wear glasses from time to time and that hasn’t been a problem. My experience the hearing aids has been good.
The only annoyance I have had is COVID related. First time I took off a mask the elastic straps caught my hearing aids and flung them like a slingshot in two different directions. Needless to say, I learned to be a little more careful.
Yes, @Poo_therapy I am learning as time goes on that there seems to be no end to the mystery and manners of PsA. On occasion, my PsA has even inflamed my wife!. It is interesting how we speak of PsA as something alive and foreign while it isn’t…it’s not a virus or other attack from without but it is ME/US that is busy finding ways to work around the barriers that we scientifically apply like biologics. I guess it is similar to cancer as our own systems turn on themselves. So we try to manage the good immune system that we have, designed to respond properly that has run wild. In a way, we are our own worst enemies and I want to just say, “stop hitting yourself!” I haven’t tried conversing with or reasoning with my PsA…yet! Still hoping in bio-logic. But thanks for sharing your journey. As each one shares, we might soon have enough material for our own reality show: “PsA Island”. @Seenie can write the plot.
LOL you are too funny! But yes, we might be onto something there. We may as well start by thinking about what what we could use as our theme music. Huh? C’mon, you can do better than “Achy breaky parts …”
Well, the Brit’s will want Elton John, the Americans need Springsteen and the Canadians will settle for The Guess Who: “I’ve come undone”, or “Runnin’ back to Prednisone” (the tune of “Running back to Saskatoon”.
@tamac, long before I was diagnosed with PsA, I had terrible attacks of dizziness which were diagnosed as Meniere’s syndrome. This diagnosis was confirmed by several top disease specialists, because I was younger than most people with it, and the pattern of my hearing loss wasn’t quite typical for Meniere’s.
Twenty years later, after working with the Meniere’s dx, and having the condition under good long-term control with a simple, mild diuretic, I met an ENT who insisted that I did not have it. Did not. No, not possible. My hearing loss profile was all wrong. He had no idea what was wrong, except that. it. was. not. Meniere’s. Honestly, I thought the guy was a nutter.
A couple of years or so after that, my “other” symptoms emerged. (Of course, nobody knew that it was PsA at the time.) Coincidentally, my “Meniere’s” also became troublesome again. I never connected the two, but now I am wondering whether there’s more to this plot than just Meniere’s.
And interestingly, I’ve had no balance problems since going on the biologic and the PsA being pretty much in remission.
I’m wondering if you might be well to see an ENT, and bounce that off them. On the other hand, if swapping out Humira for something else (there are lots of choices) gets your pain under control, and also solves the balance problem, you’ve probably got your answer.
Have you had vitamin and nutrient levels checked? I’ve struggled with b12 malabsorption for years (still figuring out why), but a deficiency can cause neurological symptoms like balance issues, numbness/tingling in extremities etc. Also i understand folate deficiency can mimic b12 deficiency, so for those on mtx or sulfasalazine its important to keep this in mind.
I suspect my possible malabsorption is in some way related to psa (through disease inflammation?comorbidity?), though I haven’t been able to figure it out just yet. My rheumy told me that with inflammatory arthritis the gut is implicated, but beyond that she was unable to give me more info or even recommendations beyond seeing a gastroenterologist. When will western medicine fully embrace diet and lifestyle beyond just talking points?
I believe in my heart of hearts that psa causes systemic inflammation, not just the typical ones we hear about (joint, enthesitis, etc). Trust your gut, haha
My doctors have determined that sulfasalazine is interrupting nutrient absorption in some way. Rather than stop sulfa, because it seems to work for the PsA, I’ve added a monthly b12 shot.
The change was remarkable. I had so much leg pain and weakness that the b12 injections have completely resolved. The medical establishment is so confident in these drugs that they forget how powerful they are and how the side effects can be more than troubling
I have learned that when the PsA gets in my jaws, which it does about once a year, that I must stand up slowly. When the first problems I had that led to a PsA diagnosis was pain in both jaws. My poor dentist didn’t know what was going on. He did a full mouth x-ray and looked it over. He didn’t see any structural problems but said the joints looked inflamed.
It must get into my ears too because I’ll have balance problems then.
. It is interesting how we speak of PsA as something alive and foreign while it isn’t…it’s not a virus or other attack from without but it is ME/US that is busy finding ways to work around the barriers that we scientifically apply like biologics. I guess it is similar to cancer as our own systems turn on themselves. So we try to manage the good immune system that we have, designed to respond properly that has run wild. In a way, we are our own worst enemies and I want to just say, “stop hitting yourself!” I haven’t tried conversing with or reasoning with my PsA…yet! Still hoping in bio-logic.
Hands down. I concede.