Methotrexate and mood swings/irritability

Caleb1981

Has anyone on Methotrexate experienced an alteration to their mood/increased irritability.

I am generally a super chilled individual but Methotrexate appears to have taken that. I’m easily annoyed and reportedly very grumpy.

I’m currently on 7.5 mg of Methotrexate injections weekly and 5mg of folic acid the remaining 6 days of the week. I’m due to go back on to 10 mg, so I don’t expect it to get any better.

Ellen

Good morning @Caleb1981

I can see why you are asking about alterations in mood with Methotrexate given that your dose is about to increase.

The Versus Arthritis information about Methotrexate (MTX) doesn't mention mood changes, but take a look at this 'search' I did:

https://community.versusarthritis.org/search?query=methotrexate%20and%20mood&scope=site&source=community

Some of the threads are 'old' ones, but some members are still around.

Here is the VA information:

https://www.versusarthritis.org/about-arthritis/treatments/drugs/methotrexate/

Best of luck and do let us know how you get on.

Ellen.

frogmorton

Morning @Caleb1981

I am sorry you are having mood swings/irritability on your MTX.

I am not aware of it happening to me but who knows? They might be too scared to say!!

Hopefully though it's like the other side effects and will settle given enough time🤞

Feeling hungover is enough to maje anyone a bit grouchy.

Take care

Toni x

Baloo

I don't take Methotrexate but I am aware from other posts that it affects mood in some real way. What I can say though, is it might not exactly be about the meds. I stay in touch with my moods using a health tracker, and once I did that, about two months ago, it started becoming pretty obvious that when I am in a flare up I get stiffer and fatigued, and start to shift, sometimes very fast, from being my usual optimistic, to being maybe undecided, to maybe becoming anxious and worried. And I shift from feeling productive to feeling nothing. I can shift back by resting up for a week, and maybe doing a few useful things round the house. I'm waiting to see what health does next, but after my investigations so far, it had better not be more stiffness.

Mrsdunit

https://community.versusarthritis.org/discussion/comment/701422#Comment_701422

Hi Baloo I would very much appreciate more info on your Health Tracker please. Thanks.

@Caleb1981 Sorry I can't help with the MTX. Maybe Baloo's health tracker might help as well. Good luck.

Baloo

Hi, @Mrsdunit I will put some detail in a message so you can see if you like it. The app comes with community support of its own.

Mrsdunit

Hi @Baloo Thankyou for the message.

Helen

Hi, I had to come off MTX because I experienced suicidal ideation. It was awful and scary. I was fine before and ok now!

Nats43

Hi there, I am new to rheumatoid arthritis I had my diagnoses confirmed yesterday at the rheumatology clinic by my rheumatologist and have prescribed me methotrexate can anyone advise me on what to expect from personal experience?

Lane

Hi @Nats43 welcome to our online community.

I understand that you have recently been diagnosed with rheumatoid arthritis and have started to take methotrexate. You wish to connect with others about their personal experience. You have come to the right place our members will shortly share their experiences with you.

In the meantime I have attached a link, information about rheumatoid arthritis you may find of help:

https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/

I am so glad that you found us.

Best wishes.

B_LIN1979

Hi there,

I’m new to the site but have had psoriasis for about 35 years and developed psoriatic arthritis over the last ten.

I’ve been taking methotrexate for around a year now (17.5mg) and have found the medication to be really effective at treating conditions - psoriasis has almost completely cleared and arthritis is manageable.

Unfortunately I am finding the side effects unmanageable despite trying a variety of methods for taking the medication and folic acid. The worst effect is my mood, I feel dreadful for a number of days, very low and depressed, irritated and forgetful - which is unusual for my character and painful for my family to witness.

I know that everyone responds differently to treatment but this is my experience and I’ve reached a point where I’ll be requesting a change of medication at my next consultation.

Poppyjane

Welcome @B_LIN1979 to the online community

I see that you have been taking MTX for a year now and that this has greatly benefitted your PsA but you are concerned about the mood swings that have developed as a side effect. You wisely say that everyone responds differently and that you have reached a point when you will be requesting a change of medication. Your rheumatology team are the best people to advise you about alternative medication, have you spoken to your rheumatology nurse often they can provide useful guidance as an interim measure in between consultations.

As you will see in the above posts from Ellen and Lane to @Caleb1981 there are some reports from members about changes in mood related to medication, it will be useful to hear from other members who can share their experiences with you.

There is a great variety of discussions and activities on the community and I hope you find other sources of information , the Living with Arthritis section is particularly helpful.

Do let us know how you get on with your next contact with your rheumatology team.

Best wishes

Poppyjane

Arthuritis

@Helen @B_LIN1979 I concur, until the 11th of March I was on 25mg MTX, the max, as the lower doses would only work for a couple of months before the symptoms returned. Immediately after taking my weekly dose It made me feel depressed and suicidal thoughts of the pointlessness of carrying on would dominate, but pass after a couple of days. I recognised this was not typically me, so just tried to push through. Harder in the darker winter months.

On top of that I would get bacterial infections because of the aggressive immune suppression from MTX, and just recovering from Shingles.

However during my last bacterial infection I was prescribed something other than amoxicillin (which should not be taken with MTX, but I was given it anyway, as GPs don’t have the time or knowledge about contraindications but the hospital won’t manage conditions caused by the RA meds). It made me horribly sick, so when I got another cellulitis infection I asked for something different, and to avoid the sickness and give it the best chance of working I halted MTX completely instead of as previously, just reducing to 15mg, which didn’t suppress RA much.

I decided to delay resuming MTX until the antibiotics were done, or I couldn’t take the RA pain anymore, however nearly 1 month on I still haven’t resumed, and have no more suicidal thoughts or depression. When I feel the faintest RA signs returning I thought my good luck was over, but when I resumed the antibiotics again, it went away. The toughest part is trying to get any NHS rheumy to listen and investigate the anomaly. People here report their experiences but until an NHS doc documents it and publishes in something like the BMJ or a peer reviewed journal, these symptoms remain unheard of by the medical community that should be treating you. My own guess is the MTX does indeed cause mental aberration and in my case I think my RA is a response to a bacterial infection that is hard to clear.

In addition to the depression, it also made it hard for me to concentrate or think clearly enough to solve complex work problems, so while the folic acid helps somewhat, you will need to persist with your rheumy to address those MTX side affects. It’s best to check if your rheumy can refer you or treat you rather than your gp, as the disconnect between their expertise can leave you sicker as in my case. If you can, get a friend to check in on you on your MTX days when you are at your lowest/sickest.

B_LIN1979

Hi @Arthuritis,

interesting to read your reply regarding bacterial infections related to methotrexate. I had a string of infections about this time last year; a chest infection, my worst impetigo outbreak in 30 years, a throat infection and another case of pneumonia to top it off. All of this within a few short months but also following a nasty case of covid. I also chose to temporarily halt methotrexate and was prescribed antibiotics which would have clashed with the medication - although could not get a clear answer on wether or not it was safe to do so.

at my following consultation with the rheumatologist, it was suggested that this string of bad luck was most likely due to a further weakening of my immune system due to the coronavirus and not as a result of the medication. Of course, I can only speculate here but it probably wouldn’t be unreasonable to assume that the methotrexate contributed also.

I’m really not out to vilify this medication as I can’t fault it’s efficacy at all, but I’m really curious about the less desirable side effects and it’s a great help to hear similar stories from other users. I do agree that there’s a huge disconnect between services and the advice can be contradictory at times.

thanks for sharing and best wishes with your treatment, hope you are having some success managing symptoms.

Ben.

Arthuritis

@B_LIN1979 Hiya! MTX is a very effective immune suppressor, but it’s not specific, so while it damps down your immune system to give you a break from RA, it leaves you open to infection from any pathogens outside or inside eg shingles. I did not have Covid around the time of my bacterial infection, but I must have come across it and the bacterium saw its opportunity and proliferated. As I was on the max dose of MTX it’s not uncommon for shingles varicella virus to decide to come out and party eventually.

However, RA can be an alarm bell for something else causing the inflammation, not simply a faulty immune system. Liken it to an annoying carbon monoxide alarm that keeps going off, and you suppress it by switching it off, thinking it must be faulty because you can’t see or smell gas. No effort made to look for a cause. Except Carbon monoxide has no smell and the alarm was designed after considerable effort by its creators to be reliable. Our immune system has also evolved over thousands of years of trial and error, to be pretty reliable, and like the CO Alarm, we should not be too quick to dismiss it. The RA alarm could as a result of an external factor (drug or pathogen) and if it’s a pathogen suppressing the immune system desperately trying to fight it off would not be a good idea. However it is rare that a deeper physical cause is looked for in diagnosing a medical “defect”, and the assumption made that your evolved immune system must have gone haywire and to immediately suppress it. MTX does what it is supposed to do very well, it’s the gold standard for RA, but immune suppression is all too often seen as the all purpose panacea rather than last resort when other possibilities have been exhausted. So I think the drug is fine, ok, it would be nice to have an RA protein specific suppressor, but it’s the best we have for a genuinely faulty immune system. Like the steroids good for medium term relief but effort should be made to prove beyond reasonable doubt that the RA is not a reaction to something that can be fixed to stop the immune system from being provoked, rather than crippling it.

However that requires considerable effort… so we just have these lucky chance discoveries and only a limited amount of research into Reactive Arthritis or inflammation caused by a pathogen, perhaps in the gut or elsewhere. Unfortunately the best science is in the investigation of luck or unlucky anomalies and these opportunities are squandered by being dismissed as luck instead of making astute observations. Imagine if Jenner had assumed milk maids escaped smallpox just because they got lucky, or Alexander Fleming had dismissed his ruined staphylococcal Petri dish as bad luck and not noticed the patch of green mould on it…

Like MTX, before 1981, PPIs & antacids were the gold standard for extremely painful chronic peptic ulcers, assumed to be due to (stress and lifestyle). They didn’t cure it, but provided effective relief. Unfortunately you also caught a load of other stomach bugs as the acid it was using to defend itself was no longer there. Check out the story of Nobel Prize winner in medicine- Dr Barry Marsh. It will be revealing.

mand0002

Hello all, I took methotrexate and hydroxychloroquine during year 1 of my diagnosis, and then my dr dropped methotrexate and I stayed on a low dose of hydroxychloroquine for the last 9 years. It was working great, but recently stopped working, and I am now starting back on Methotrexate.

To be fair, I was in a dark mood in the beginning anyway because I was in a lot of pain and pretty depressed about the idea that I might have to live with it. That said, there was no doubt that I noticed increased irritability for a couple days each time after taking my metho dose , it seemed like I walked around with furrowed brows all my waking hours. But for me this taper off after a couple months and was eventually fine. At least I think it was.

Mainly, my side effects were stomach irritability and hair loss. This time around, I anticipate the same, mood changes that will subside (hopefully) and indigestion/heart burn. I plan to use minoxidil to help with the hair, and for the indigestion I'll figure something out.

Additionally, I encourage y'all to research supplements, especially curcumin and EPA/DHA. I take pretty high doses of these every day, and have definitely noticed a difference when I run out and get lazy about getting more.

As an aside, my hydroxychloroquine side effects are ringing in the ear. Started about 1 year into it.

Good luck on your journey and I hope Methotrexate works for you.

noddingtonpete

Hello @mand0002 and welcome to our friendly and supportive Community. Interesting to hear of your journey and of your research in to supplements. It is good that you have something that helps you. Side effects are weird in that what some people get others don't and so on.

Good to have you here

Best wishes

Peter

mand0002

Hello all, I took methotrexate and hydroxychloroquine during year 1 of my diagnosis, and then my dr dropped methotrexate and I stayed on a low dose of hydroxychloroquine for the last 9 years. It was working great, but recently stopped working, and I am now starting back on Methotrexate.

To be fair, I was in a dark mood in the beginning anyway because I was in a lot of pain and pretty depressed about the idea that I might have to live with it. That said, there was no doubt that I noticed increased irritability for a couple days each time after taking my metho dose , it seemed like I walked around with furrowed brows all my waking hours. But for me this taper off after a couple months and was eventually fine. At least I think it was.

Mainly, my side effects were stomach irritability and hair loss. This time around, I anticipate the same, mood changes that will subside (hopefully) and indigestion/heart burn. I plan to use minoxidil to help with the hair, and for the indigestion I'll figure something out.

Additionally, I encourage y'all to research supplements, especially curcumin and EPA/DHA. I take pretty high doses of these every day, and have definitely noticed a difference when I run out and get lazy about getting more.

As an aside, my hydroxychloroquine side effects are ringing in the ear. Started about 1 year into it.

Good luck on your journey and I hope Methotrexate works for you.

pigeon

https://community.versusarthritis.org/discussion/comment/703496#Comment_703496

Hey Helen, thank you so much for making this comment. I have taken just one dose of methotrexate and this is pretty much what happened to me as well. Its not entirely out of the blue, as thoughts like that do occasionally affect me ( I have a ton of trauma in my childhood).

It's given me a real scare though and I'm terribly worried about this week's dose and not managed to get hold of anyone to talk to yet about it.

Thank you anyway for your comment.

Ellen

@pigeon Welcome to the online community I am glad you were able to fine an 'old thread' which struck a chord with you.

Having said that I am quite concerned that you are struggling to get some medical advice after your first dose of Methotrexate. At the very least you should be able to get hold of your GP? I presume you have contacted, or tried to, your rheumatology helpline?

If all else fails maybe a call to 111 is in order?

Our helpline might have some ideas to to help you and they will answer the phone:

tel:0800 5200 520

Ellen.

pigeon

Hello,

I phoned my consultant secretary and got and answer machine, they are all on annual leave, but they said phone the GP. So I did and I got to speak to the on call Dr and she was emphatic that I not taken the dose , that she would email my consultant to ask advice. She said we really don't want to precipitate a crisis, and I totally agree. It was reassuring to have her say that and give me the advice.

So I didn't take the dose and hopefully at some point I'll be able to hear back from someone about next steps

Thanks for your support everyone, it really helped me think things through a bit and question the wisdom of pushing on.

Pigeon