Methotrexate and mood swings/irritability

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.

Hi @Baloo Thankyou for the message.

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?

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.

@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 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.

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.

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