Newbie; Humira&MTX memory impairment

[farjer121]

Hi all, new to this community.

I have been on mtx since about 2003 on increasing dosages and on humira since 2009... And other meds as I am diabetic and also suffer from depression.

Whilst on mtx I did notice problems with my memory but this has got worse in recent months to the point where I now could lose my job due to poor performance arising from concentration problems and not remembering things i did a few moments ago or am about to do.

Has anyone experienced this on the above combination of drugs?

[Hidden]

Hello there,

so sorry to hear that you are having these problems. I'm a newbie to all of this tho' I sometimes feel like I've been on MTX for years it is actually only 6 weeks! However I do think some aspects of my memory are affected just a little. I should think this is something to take to your GP and ideally your Rheumy as obviously it is a very serious matter for you.

This might be a bit of a long shot but employers are obliged to make provision for physical disabilities so could they not be persuaded to cut you some slack and accommodate your memory issues? I'm thinking of little things like liberal use of post-it notes! Perhaps if you could find a way (with support from union or an OT, perhaps) to be completely upfront about what is happening and modify the way you work then you'd be under less stress. That in itself might help the memory as I would think that depression and stress aren't great for concentration or memory.

I know that sometimes we feel we have to keep these things to ourselves but I hope you will at least seek help from your doctor as if this is a side-effect it's just as much an issue as physical ones.

All the best,

Christina x

[farjer121 in reply to Hidden]

Christina, thank you for your reply.

Sadly my line managers have little understanding, despite Occi Health reports.

For example my arthritis was in flare up and I was unable to keep to start and finish timings... I sought some assistance & understanding which was given for a few months and then then they started disciplinary procedure... Found me guilty, took away my flexi time and put me on fixed hours as a punishment! I took them to Employment tribunal which is to be heard next January.

Thank you again for your reply.

[rab333]

Hi

I have noticed also that my concentration levels have changed since my diagnosis 2 years ago. I have been taking Humira for around 8 months now. My memory is definately affected but I feel it is down to the fact that I am unable to concentrate and am not taking in the info, so I think that is why I don't remember it...I think somehow the RA has affected my ability to concentrate on the levels that I used to. So far it has not affected my work but I am worried that it might progress to that level, at the moment it mainly affects me at home as I forget what my wife has told me , or asked me to do. It has got to the stage that I am becoming embarrassed about it...

[farjer121 in reply to rab333]

Rab thanks for taking the time to reply.

Are you also taking Methotrexate (MTX) with your Humira?

My memory probs started with forgetting words, then calling things by the wrong name and progressed to very short term memory... No recall what I'd done a few moments ago or am about to do.

I have tried memory aide as Christina suggested above but things are such that I forget to write the note... And this increases the stress which also contibutes to memory impairment and had resulted in another disciplinary procedure for poor performance!

I hope you manage to get to grips with things, I have slowed things down dramatically which has helped a little.

Thanks again.

[jaqi1 in reply to rab333]

hiya i fully understand how you feel. i thought it was just me going mad

[farjer121]

Jaqi, thanks for sharing.

It seems we are not alone in this... Found a document for nurses in America online about "ChemoBrain". It talks about the affects of MTX and some other drugs on memory and learning. My Rheumo Consultant said the dosage we take is much lower, but that everyone is different.

Also found a test carried out on mice which concluded that MTX clearly has a negative affect on existing and new learning tasks for the MTX group, whilst the placebo group were acting and learning normally.

All the best FarJer

[JennaB]

I just want to say thank you to everyone who posted here, because I thought it was just me. I know not every symptom is the same or to the same level for everyone. Medications work differently on everyone, but I feel like the combo I'm on is just killing my brain. I'm worried that its going to be "permanent" if I continue on my meds.

I have been on MTX for about a year, which was decreased some when my Rhuemy added Humira to my treatment plan. So for the past 4 months I have been on both medications. My last 2 blood tests showed my inflammation markers are under control. I still have pain daily, but it is so much less. My fatigue level is much lower too.

At first, I noticed a mild cognitive impairment that was really limited to the day or 2 after taking my meds (that was when I was on the MTX only). Over the last few months, it has just gotten worse and worse.

I am a college student who was maintaining a 4.0 GPA with a full class schedule. This current semester I can barely get a 70% in any of my classes (one of which I had to drop). I have run out of time when testing, which has never happened to me before.

Its like every thought in my head is just outside my reach. No matter how long I study, change in study techniques etc. I am unable to "keep" concrete thoughts. I don't know how else to describe it. Its like having a vague idea that you can't seem to put details to. I am not sure which medication may be causing it? I do notice that it is getting worse and that I am not rebounding from it. I have long moments when I pause, searching for not just the "words" but for the next thought ... that never seems to come along.

I have been sucking up the hair loss because I "knew" it could happen. I use good products for volume and fullness, take folic acid, eat properly etc. So I feel like I am managing it to the best of my abilities. There is a trade off for not being in crippling pain. But this memory impairment is just awful, I am due to start my specialized program of study in the spring and I worry that I might not even make it in now.

Has anyone paused in their treatment plans or changed medications and noticed an improvement in their cognitive state? I would really be interested in hearing about it.

I didn't realize that this was what remission looked like, but I'm learning, remission means controlled RA, not "just like you were before". I'm hoping to find grace with that sooner rather than later.

-Kindest regards, Jenna

[esoterical]

Are you ok now? I started taking Humira in Mar 2020 & memory problems started in April 2020. I reported it to GI in Aug 2020 after confusion got markedly worse. Used to be and Operations Manager, but now I can't work or cook or drive. I got lost in an elevator 4 days ago. I am not talking about forgetting my car keys; I'm talking about wondering where I am, how I got there, and if I even drove. I started searching on Dr. Internet and in 2 days I've come across quite a few of us. Can't understand why I want' told of a connection. Please reply if and when you can. Either way, my best to you.