methotrexate confusion/Neuro symptoms

[Sunflowergirl01]

Hi, I wrote previously about family member’s confusion/dementia symptoms on low dose methotrexate. Scans showed no signs of age related degenerative dx. So did my research & found multiple cases of debilitating cognitive decline even on low dose methotrexate, despite doctors not listening, at first. This treatment does not allow for addition of folate as it is for a rare form of leukemia. Even with the addition of folate, people do still get these symptoms. Also, family member had barely normal B12. So just wanted people to know this info. Though rare & under reported, it is a serious symptom that can be quite devastating. After discontinuing the methotrexate, patient has now greatly improved in cognitive abilities.

[oldtimer2]

Exactly my own experience. My daughter in law was convinced I had early onset dementia. After stopping the methotrexate I recovered my mental abilities and am still researching writing and lecturing. .

[farjer121]

Yes, I agree with your findings and that of “oldtimer2”… Have been on MTX for extended period, I had to give up work because of physical impairments due to my illness AND cognitive decline due to the drug.

At start of taking this drug Rheumatology Dept seemed to know little of cognitive impairment side effects… Many years later they apparently know more and issue cognitive warning… Had I known at point of prescribing I would have turned it down.

Hope your family member continues improving mentally and physically

[RAGuy]

I had a similar experience myself. Fortunately my RA team were aware throughout the unit with all the team immediately reacting to my report of symptoms. I was told to stop taking it right away and I had a very swift appointment with my consultant.

It is a pity that this is not the case in every unit, The quality of the leadership is reflected in the quality of the unit.

[Colaba]

I apparently have an unusually uncommunicative and very infrequent relationship with the NHS, certainly in response to RA.

However, it seems generally to have been assumed that Methotrexate is working for me. The RA I acquired at 80 has diminished me physically to an irritating degree, but then I am very old, now 85. When I do become a little confused and irritable it is generally in response to some decline in physical rather than mental capacity.

Several good friends have died in the past few years, as we do at our age. There perhaps remains only one, who was years before me with RA. I have had no recent response from him.

I stsill lead an active life, walking is a bit tiresome, buggered knees - not RA but can still drive long distances with no ill effects.

[medway-lady]

I'm sorry but this is a subjective post, and it is the most commonly prescribed medication for RA. I'm worried you could frighten people who should be guided by medical professionals at the start of their RA journey.

[Lolabridge]

Covid infections are also causing confusion/cognitive issues and even dementia, especially repeated infections. So don’t blame it on methotrexate which many take with none of those problems at all!!

[Neonkittie17 in reply to Lolabridge]

That is a very good point, Lola. x

[medway-lady in reply to Lolabridge]

It bothers me as its the first medication prescribed so good few hundred thousand take it every day and not in the dose for Cancer. Anyway it's rarely used in Cancer now. But these 'informative' posts really aren't. All medications carry risks and commonest cause of confusion in elderly and I'm one , is a UTI ! I'm appalled at the post as if a new patient it might stop some from taking it and the risk of uncontrolled RA is not insignificant. Thats why I've never posted much about what caused my AKI and being one in 29 million people is not a significant reason to frighten anyone taking the same drug.

[Lolabridge in reply to medway-lady]

Yes I agree with you!

[Sunflowergirl01 in reply to medway-lady]

The vast majority of people taking low dose methotrexate, do great. However, this is a rare but serious symptom for some people. I wish we had known this information upfront. It would have saved us a lot of fear & heartbreak thinking he had serious dementia. I think people should at least know. The neurologist & hematologist have confirmed it is the methotrexate & he now is almost completely back to himself.

[Sunflowergirl01 in reply to Lolabridge]

Yes, it is a great drug for RA & some Psoriasis. However, it has been confirmed it was the methotrexate that caused the cognitive issues.

[medway-lady in reply to Sunflowergirl01]

I’m sorry but the risks of all medications are listed if you Google MTX it’ll pop up but that doesn’t mean it’s a significant risk.

[Gymcactus]

I have taken methotrexate for nearly 8 years with no issues at all, I'm sure my family would comment if I became forgetful.!!

[Sunflowergirl01 in reply to Gymcactus]

Yes, thankfully, cognitive issues are rare. And I don’t mean a little brain fog but serious issues. Your family definitely would not miss it nor would you.

[welsh12]

There are many reasons for brain fog and confusion including UTI s Menopause stress and depression its really up for medical staff to work out what is causing this rather than attributing it to Methotrexate lots of people worry enough about the side effects don't take it and are are left in pain on this site. I don't really see it being helpful you posting about your family member. In terms of b12 this is tested and can be requested by the person with Rheumatoid Arthritis or rheumatology.

[Runrig01]

I am sorry for your family members experience. However, I agree with others that this post will only cause unnecessary anxiety. The risk is that potentially you put people of using MTX for treatment, and they decide to live with uncontrolled inflammation, leading to potential problems with other organs, like the heart and kidneys. We can’t expect Drs to list every side effect for us prior to starting. We have a duty ourselves to understand potential side effects before starting which are listed in the patient information leaflet. Too many people expect to be spoon fed every detail, and that’s from my experience as a nurse for 34yrs. I’ve been on MTX for 8yrs, with absolutely no side effects, and that’s at the highest dose.

[Sebastian247]

I am also concerned not to dissuade people from taking MTX, especially newly diagnosed. It does work well for very many people so that needs to be taken in account.

I was on MTX for a year and had a very slow build-up of side effects that included signs of cognitive decline (memory and concentration) plus very severe chronic fatigue (worse than RA related fatigue I'd experienced previously) and balance problems (vertigo type feelings). The efects were that bad I was worried I might have to give up work.

After a battle with rheumatology and finally seeing a different consultant, I was diagnosed with neurotoxicity to MTX and it was stopped immediately. I had paused it for a month previously to test if it was the MTX and had felt these symptoms decline.

Having now stopped it 9 weeks ago, all those symptoms have gone, and I feel so much better in so many ways (including less depressed / low mood).

The consultant said it was a rare response to a low dose (20mg / week). So clearly it can happen, but not commonly.

I would still have been happy to try MTX when first diagnosed, had I been aware of this risk, as it is apparently a rare side effect and MTX does work well for so many. It is a personal choice for each of us. Seb.

[SarahW-NRAS Partner NRAS]

Thank you for your post Sunflowergirl01. Sorry to hear about your relative's experience with methotrexate. As has been highlighted though, we would like to re-iterate that methotrexate is considered the 'gold standard' in rheumatology and many, many people do very well on it. In the event of experiencing side effects, please reach out to your rheumatology team for medical advice.

Kind regards

Sarah