RA and Brain fog Methotrexate: Hello I am new here has... - NRAS

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RA and Brain fog Methotrexate

charn profile image
19 Replies

Hello I am new here has anyone being treated with Methotrexate had Brain memory issues and have they gotten better once you stopped taking the drug

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charn
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19 Replies
Deniseelk profile image
Deniseelk

Hello there! Just to say I was on Methotrexate for 5 1/2 months and YES I certainly had that brain fog! I would be convinced of timings of meetings , turn up and find I was out by 30 mins to 1 hr ( luckily every time I was early)! The way I coped was to write it all down and keep checking it throughout the day! Best of luck!

Rulds2 profile image
Rulds2

Hi - I went on methotrexate for awhile - that was a few years ago , yes your memory does slowly get better - I found brain fog comes and goes depending on sleep ( how much I get and diet) as in if I cut certain things out my diet is better- carbonated drinks tea coffee chocolate cake etc

AllyWelshDragon profile image
AllyWelshDragon

Hi yes I was like that for a few months until I got used to it. Then the headaches next morning after taking it gradually got better and went. I still get the odd brain fog but I keep absolutely everything I have to do logged on my phone calendar just in case I forget!

I'm in remission at the moment and leading an active life. Please try to persevere if you can, it is worth it. As the poster above says, keep to a healthy diet - and make sure you take your folic acid!

Best wishes

Ally x ☺

fluffness profile image
fluffness in reply toAllyWelshDragon

Hi Ally I'm just wondering did you stop methotraxate while u are in remission?

AllyWelshDragon profile image
AllyWelshDragon in reply tofluffness

Hi Fluffness

No I'm still on methotrexate, and my rheumatologist only sees me every six months. He's kept me on the same regime of 15 mg of MTX a week plus Salazopyrin two tablets twice a day. I'm sero-positive RA.

phil_54 profile image
phil_54

Hi Charm, I have been on MTX for two and a half years now and apart from the usual side affects i have'nt really given it much thought but now you you mention it i do experience some lapses in concentration or driving somewhere and forgetting the directions, repeating myself without even realising so yes maybe food for thought. to be honest i dont want to stop the MTX as i find it works well for me so maybe at my next review i will mention to the consultant.

Cheers

Nicole2000 profile image
Nicole2000

Hello Charm,

My brain fog started long before I was properly diagnosed. If it isn't written it won't happen. My work and home calendar are my life line. I also use on line post its. I work through list so that I priorities and be productive at work.

A good e.g. I had it really bad week, I couldn't remember my bank card PIN numbers. My daughter's now know them and usually help out at the tills. If I know I'm having a really bad brain fog day. I make sure my shopping in under £30, so I can use tap and pay.

So you see there are ways of woking around it, so it doesn't look like I've got early onset dementia.

Find other ways to cope with it. Keep smiling it does get better.

Nicole

oldtimer profile image
oldtimer

My daughter-in-law was sure that I had early onset dementia when I was on MTX. Now I've come off it she's not so sure! It is difficult anyway when you are distracted by trying to cope and managing the pain and fatigue to remember things, but the fuzziness of thinking that I had went a few weeks after stopping the MTX.

AllyWelshDragon profile image
AllyWelshDragon in reply tooldtimer

It's strange because I was blaming a lot of my brain fog on my menopause! I'm perimenopausal and sometimes I don't know what is causing which! Or if it's a double dose lol x

nomoreheels profile image
nomoreheels

I suppose some in the very early months but the benefits to my RD far outweighed some fuzziness, it certainly wasn't a cognitive problem such as I have if I go too high dose wise on pregabalin. Do bear in mind that pain/lack of restful sleep or the disease itself can also have an effect on how clearly we think, what I'm meaning is it' steady to blame meds, I've been guilty of that before now. As it's something you're aware of & known to happen so do report it to your Rheumy though if it's becoming a real issue, if it's thought it is connected to MTX a reduction in dose may help if it is otherwise working for you. Certainly worth persevering with as it may just ease off the longer you're on it.

popsmith1874 profile image
popsmith1874

I had it bad when I started mtx at first 3 years ago , not as bad now but still get odd bouts so write everything down I've to do to be safe, I remember a couple off years ago I arrived at gps to get my bloods checked, only to be told I was a week early which was a wee bit embarrassing

mitty profile image
mitty

I had brain fog while taking methotrexate but stopped when I moved on to hydroxychlouroquine. Still have dippy moments but not as bad as the embarrassment of not knowing your sister-in-law's name and her staring at you. I found that puzzle books helped and definitely write all appointments down. Things do get better when not on mtx.

Daviator profile image
Daviator

Get the fog, still taking the MTX.

lovekittys profile image
lovekittys

It's nice to know this happens to other people, I wasn't sure if something was going on with my memory or it was brain fog.

Mintychristine profile image
Mintychristine

I started forgetting everything First I turned up to hairdressers wrong day then wrong time Poor dog got his groomers app wrong so many times I had to find a new one! Daughter's birthday! You name it! And I've done it. The worst is pin for bank card!! I've stood there and it wouldn't come. Its good advice to write it down everywhere put things in your phone and even though the reminders can be an irritant and hard to swallow its the only way forward Accept you definitely have not dementia or anything bad its just part and parcel of this condition

cornishjan profile image
cornishjan

I was on MTX (25mg) for GCA. When on the pills I had terrible brain fog. I daren't drive for 24 hours, couldn't do cryptic crosswords (and yes, I could do them before the MTX) and I could only read books I had read before as I couldn't otherwise follow the plot or characters. I was on the **** pills for about two years. I really don't know how I put up with it for so long as they also made me tired (slept for seven hours straight the afternoon after taking them) and felt nauseous for several days. Looking back, I must have been mad to put up with it. The brain fog didn't seem to improve noticeably all the time I was on it but disappeared after I came off. When they wanted to put me back on it again after a year I refused to take the pills again (sense at last. Perhaps it was the brain fog that let me stay on it for so long) but I said I would try the injections, expecting less nausea but all other symptoms the same. Result! No nausea, feel just a little jaded the day I take the injection but the brain fog seems to have virtually vanished. I don't drive for 24 hours after taking it if at all possible but I could, I just seem to have to concentrate more. But to answer your question, no, it didn't get better but we are all different and others might have found that it lessened considerably.

charn profile image
charn

Hi Thank You All for your Replies , I have been on Methotrexate for aprox 10 yrs and the memory/confusion has been getting steadily Worse over the last few years I have had tests that show brain issues that the Neurologist wonders if the MTX could be the cause & asked if I Wanted to stay on it. I have chosen to stop taking it, But I worry if my "brain" will improve now or stay the same. I have Severe RA & the MTX Definatly helped the RA but at what cost to the rest of me? i am on Arava & Prednisone as well along with pain meds so will stay on those.

jessquilts profile image
jessquilts

I had some fog before starting MTX, but I actually think that it's related to being preoccupied with pain. Mine is worse the day after MTX, but usually have a whopping headache that morning also. Once the headache and upset stomach goes away then usually the fog lifts also. That makes me wonder if the fog is from the MTX, RA, or if it's like I said, preoccupation with pain or being uncomfortable and it causes me to be distracted until it's under control.

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