RA, methotrexate and dementia: HI, So, My Mum has RA... - NRAS

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RA, methotrexate and dementia

annabellc profile image
17 Replies

HI,

So, My Mum has RA, she is in her late 60s and diagnosed with RA in her late teens. She has been on weekly injections 20- 25mg of Methotrexate for past 2-3 years. He memory is shot to bits. I keep reading various studies how Meth can cause brain fog and issues with cognition. I really just want some clear answers!! Her memory seems bad all the time, not just a couple of days after the injection but she has been on it for quite a long time. She has been to GP who carried out some memory tests and told her to come back in 6 months time. I love the NHS (I work for it) but I do worry that they will just slap her with a dementia diagnosis due to her age and leave her on the meth. without investigating if it is the meth first. We have mentioned her memory to the RA consultant who just went 'mmm' and wrote it down. She is back there end of the moth and me and my sister are pushing for a CT head scan to try and get to the bottom of it. Has anyone here got any advice/ experience of similar memory issues? If so did you/your relative/friend come off the meth and see an improvement in memory??

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17 Replies
Strayleaves profile image
Strayleaves

Hi annabellc ,

Sorry to hear of your mums diagnosis.

I have RD , I'm on Methotrexate and Enbrel ......and I am in my early fifties.

I do have 'memory fog' , bad at times , and I still work two days a week (luckily in a non stress job ) My mother and grandmother had dementia. My mum passed just over a year ago ....only seventy three (stroke) .

From what I understand .........

From a dementia diagnosis perspective , a ct will show any major brain abnormalities and if there is a degree of atrophy , but often a geriatrician will just go on history and cognitive assessments , to make a formal diagnosis. A geriatrician will probably have more answers for you in regards to a differential diagnosis between the methotrexate brain fog , and dementia. (Keep in mind that there are also many types and causes of dementia )

I am quite forgetful at times , and I just can't remember some things .......and I still have two kids at home .....I do worry a bit over it , and I hate the fact that it could be dementia (....or methotrexate brain fog) ,

But to be honest , I personally would prefer not to be in the absolute agony of a RD flare , and be a bit forgetful , if that's what I have to do (ie take the methotrexate) .

Good luck with mum ,

I know it can be worrying time for you all .

X

tinkerbell22 profile image
tinkerbell22

This is slightly different (obviously) but I was on steroids for just two days and I had bad memory loss. It was very sudden for me, and I did say to my partner "I feel like I have dementia!". I left food cooking on the stove and walked away from it, totally forgot I was cooking! :-o and I have moved things around and I have no recollection of moving them or where to find them now! I stopped the steroids as this was too much for me. Since stopping, my brain clarity has gradually returned :)

I also have Hashimoto's underactive thyroid, another autoimmune disease. This can cause brain fog when not managed. Steroids can affect thyroid function... could it be methotrexate does too?

Sorry for the crossover betweem steroids and methotrexate but I just wanted to share a similar experience.

helixhelix profile image
helixhelix

Having had 2 family members with dementia (Alzheimer's and vascular dementia) I feel there is a pretty big difference between that and brain fog or a shot memory. Although perhaps early stages may have more similarities. So I agree with Strayleaves that she may well get better answers with a referral to a geriatrician or pushing for a CT scan via the rheumatologist. Although did the GP not give any indication whether the memory tests showed that there was a possible issue?

Has she taken lots of steroids in the past? As they can have weird long term effects (Tinkerbell's immediate effects are I think something different again). And if she has only been on MTX for 2 -3 years what treatment did she have in previous 40+? (3 years is not a long time in RA world) As changes to brain chemistry can happen over a long, long time so may well want to look more widely than just latest treatment.

I did find one study that suggested that in terms of full-on dementia, DMARDs like methotrexate might actually protect you not harm you. So obviously this is an area yet to be fully researched. Link here

medpagetoday.com/mastery-of...

But good for you to be concerned to get your mum's treatment right. But do be aware that it could just be a horrible coincidence, as dementia can start young.

BoneyC profile image
BoneyC

I'v been on MTX for over 30 years and other drugs for 46 years. No signs of dementia yet.

tinkerbell22 profile image
tinkerbell22

I think my concern would be the Drs assuming dementia when it may be side effects from meds. Again I've had different experiences but I know first hand how quickly GPs can presume something is mental functioning issues (repeatedly) rather than side effects of a medicine or some other physical issue. So be very careful to explore All options.

EVEANDMIKE47 profile image
EVEANDMIKE47 in reply totinkerbell22

your right books on mental problems and people in institutions who only had drug related issues causing dementia like symptoms

ITYFIALMCTT profile image
ITYFIALMCTT

In line with the other responses, I wonder if it might be useful if your mother were to have her vitamin B levels checked? She'll be taking folic acid supplements as part of the Mx routine and she might want to check the overall impact of that on her B12 levels as there are strong indicators that B12 deficiency can have neurological symptoms that include confusion, memory loss, and the usual suspects for the dementia cluster of illnesses.

in reply toITYFIALMCTT

Great description, thinking through treacle. I am always worse the Day of methotrexate. I feel more balanced once I take the folic acid. Today I put the coffee pot on the stove and on my way to the bin, started pottering in the garden!!!!! I don't do that later in the week. I did remember before it blew but was still cross with myself.

Darlywarl profile image
Darlywarl

I think you can tell a methotrexate brain fog. It's like thinking through treacle. I had it very bad and as an accountant with two children and no partner my rheumy was very understanding that I had to earn a living. He took me off it straight away and I'm now happily on biologics. I made it quite clear that I am better to society working than on benefits. Hope that helps

EVEANDMIKE47 profile image
EVEANDMIKE47

my wife was put on this poison when she was 69 yrs old and after abt yr or so she went down so fast like a 4 yr old cant dress herself cant find bath room just cant follow any kind of instructions at all. got to searching b cause side effects never mentioned it caused dementia so I found on more than one site women over 60 with yr use 87 percent chance of dementia, and to make it worse went to Birmingham al. to another ra, doctor who was ra research asst professor she said why u giving this strong drug ur wife only has orthprosis arthritis, I was pissed, I asked then more than once did blood chk she had ra never would give me answer said sometimes it just didn't show up. this has killed one third of her life, beautiful out goind person who was told many times by strangers how much they enjoyed talking to her she just had a voice u want to listen to, now like a 4 yr old child. in process of hiring attorney, this is a drug that will kill u or leave u a vegetable, had I know about it causing dementia no way would I have let her take this poison!! beware of this so called medication!!

Rashford20 profile image
Rashford20

There seems to be some conflicting information online. Personally I found it much harder to concentrate when my disease wasn’t under control. I take 25mg of MTX and work 50+ hours a week

EVEANDMIKE47 profile image
EVEANDMIKE47

get off mtx as u get older wife went from a reporter type person to not being able to find b. room in house she living in for 15 yrs common sense kills cells in body so it also kills brain cells older ones gets rejuvenate less cells in body like when young this is a killer drug esp. for older people wife like 4 yr old memory gone gone gone went from great to 0 after taking for 1.5 yrs I would not give this drug to worst enemy. side effects showed no dementia problems drug comp. dont give a damn its about money look at the law suits they have each yr class action law suits, this speaks louder than anything I could say.

KittyJ profile image
KittyJ in reply toEVEANDMIKE47

But that might not be because of mtx , could just be a coincidence, lots of people get dementia as they get older or even not do old.

MIKEANDEVE1947 profile image
MIKEANDEVE1947

STUDIED THIS POISON FOR 2 YRS KILLS FOLIC IN CELL, THAT CARRY OXYGEN TO ALL PARTS OF BODY , THIS INCLUDES BRAIN, ITS A CHEMO DRUG CHK OUT MTX CHEMO BRAIN, U WILL FIND SHOCKING SIDE EFFECTS TO BRAIN CELLS IN SHORT TERM USE IF FEMALE ORVER 60. KILLS MCHRONRIA CELLS IN STOMACH, WIFE LOST FROM 175 DOWN TO 94 PDS IN 5 MONTHS DUE TO U ONLY GET ABOUT 35 P CENT OF NUTRIENTS FROM WHAT U EAT. CHANGES DNA IN BLOOD SYSTEM KILLS RED AND WHITE BLOOD CELLS, HOW DO I KNOW WIFE AFTER 5 MONTH ON 25 MG COULD NOT FIND B. ROOM NEXT TO BD. ROOM. LIKE I SAID LOOK UP CHEMO BRAIN THIS DRUG INITIAL USE WAS FOR CHILDREN W/ LEUKEMIA GAVE THEM MONTHS OR YR OR SO BUT KILLED BRAIN FUNCTION. COULD GO ON AND ON THIS HAS DEVESTATED MY WIFES LIFE. LIKE A CHILD AS I WRITE THIS WAS A GREAT SPEAKER MOST EVERYONE SPOKE OF KIND OF HER BUT ESP. HER VOICE WAS A VOICE U JUST WANTED TO LISTEN TO. ALL DRUGS POISON BUT THIS DRUG BAD VERY BAD. DO YOUR HOMEWORK UNFORTUNATELY I DID NOT DO ENOUGH FOR FDA COVER FOR THIS CHEAP POISON , THEY TAKE A DRUG FOR ONE THING AND TRY TO SELL IT FOR ANYTHING ALL ABOUT MONEY LIVES DONT REALLY MATTER N IF THEY HAD DRUG TO REALLY HEAL WHERE WOULD THEY GET MONEY FOR THE DRUGS. SICK IN AMERICA!!

KittyJ profile image
KittyJ in reply toMIKEANDEVE1947

I’ve been on mtx for over 25 years and not lost any weight or brain function. The amounts we take are tiny in comparison to that used in chemo. I’m really sorry to hear your wife has dementia.

nomoreheels profile image
nomoreheels in reply toKittyJ

Tiny & less frequent.

nomoreheels profile image
nomoreheels in reply toMIKEANDEVE1947

Hiya Mike. Unfortunately you're unlikely to receive a response as this post is 5 years old (you can see beside the username). This was the only post ever written & there were no responses to any of the replies.

I'm sorry to hear of your wife's dementia diagnosis. It is an awful disease, a relative of mine had it & know how it affects everyone in the family.

Whilst we are in the main in the UK, NRAS being a UK charity, it is interesting to hear of experiences of others with RD in other countries.

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