RA, methotrexate and dementia

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??

8 Replies

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  • 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

  • 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.

  • 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.

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

  • 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.

  • 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.

  • 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.

  • 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

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