Methotrexate and mental health

pigeon

Hi all, this is my first post, apologies if I get anything wrong.

I was recently diagnosed with seronegative inflammatory arthritis, which I've been told to think of as 'probably rheumatoid arthritis '. I'm not highly symptomatic, I have one finger that doesn't work, and aching finger, wrists and ankles, but apparently MRI showed many joints affected by RA. I think I block a lot of the sensations out somehow.

Im on 15mcg (or is it mg?) methotrexate. I have taken one dose. Yes, just one dose! I had a lot of nausea and dizziness the next day after taking it at night, but after about 24 hours of that, I just lost the will to live. I would call that suicidal adjacent feelings, since I wasn't actually making a plan, just the step before, where you lose the will.

That lasted another 24 hours and as the nausea subsided, so did those feelings.

I have a ton of trauma in my childhood, really extreme abuse over many years and I'm in long term psychotherapy for that and doing really well. Suicidal ideation is actually quite rare for me, though I have encountered it occasionally, and I take it seriously. I take my recovery really seriously and don't want anything to derail it.

I rang the NHS helpline I have for rheumatology and it was an answer machine, and they try and phone back in 2 weeks. I really don't think I can do this dosage or maybe even this drug if it's going to affect me this way.

Im faced with taking a second dose tonight. And I'm panicking somewhat. I can't see myself taking the whole dose.

I talked to my psychotherapist last week about it all and just saying the word methotrexate made me immediately nauseous.

I saw another post about metho and mood changes, very helpful, and a comment in there from someone with suicidal ideation on that drug. Very helpful to see.

I took folic acid the day after my metho last time. I thought to take a dose yesterday the day before my dose, and it made me feel really sick too! Is that a thing, folic acid making you more nauseous not less?

Apologies for the ramble. Just not sure how to proceed, should I be more forthright asking for help? Like phoning the consultant maybe?

frogmorton

My Goodness me @pigeon 😮

I know I wouldn't be taking that without getting some advice. Ring your GP/111/ or the helpline here.

It's not ok to be expected to wait 2 weeks for a call back when it's urgent which this clearly is!!!!!

Please do let us know how you get on

Toni x

HelenS

Hi @pigeon

Thank you for posting on the Online Community. I am really sorry to hear that you are experiencing these feelings, this must be extremely worrying for you.

If you are unable to get through to your Rheumatology clinic then we would suggest ringing NHS 111 straight away. A lot of people find that some medications aren’t suitable for them especially if they experience serious side effects and this may be the case for you, but only a medical professional will be able to advise you.

There are other DMARDs that may be much better suited to you, but you would need to get medical advice as it may be that they advise not to continue taking Methotrexate due to the side effects you are experiencing.

Talking about how this is making you feel can be helpful, also getting help and support from family and friends if you can. If you would like to talk things through informally and in confidence about your arthritis and how you are feeling, please do call our free Helpline on 0800 5200 520 weekdays 9am - 6pm.

If you feel that you need more detailed support then there are lots of professionals who can help e.g. Samaritans or Mind, I've included a link below.

https://www.samaritans.org/

Please do let us know how you are getting on, we are here to help

Helen, Helpline

pigeon

Thanks for your comments @frogmorton @HelenS I appreciate them.

I forgot to say I am diagnosed with complex PTSD.

I'm not great at asking for help with medical stuff. My ringing the helpline one time was it, and I didn't say it was important or urgent on my message, which in hindsight would have been good. I hadn't thought of NHS 111 or GP. My mind sometimes just shuts down a bit around stuff like this, it makes it hard to navigate.

frogmorton

I also hate getting in touch with anyone medical @pigeon I fins it so hard and give up very easily. BUT you must it's really quite important well very important in my opinion.

It's not safe for you to feel like that and as Helen said there are other options.

Decide who you can cope with ringing most easily, but you must get through today.

Please do let us know how you get on we worry about each other on here!

Right behind you while you make the call.🤞

Toni xx

HelenS

Hi @pigeon

Yes it can be difficult dealing with medical questions but in this instance it is important that you get some medical advice.

Again if you would just like to chat to someone on our helpline then we have trained advisors who can give advice about arthritis, talk through options and also offer suitable signposting, if you feel that this may help.

Regards

Helen

pigeon

Thanks guys. I phoned the consultants secretary and answer machine said everyone on holiday and to phone GP. So I phoned them, spoke to a person 😃 and the on call GP is going to phone me back.

I'm thinking about not taking another dose until I've managed to speak to someone. It does feel odd though, to not do exactly what I'm 'told' (to take the medicine and a certain dosage and frequency). But there wasn't any advice about what to do if it made me suicidal, so I guess I might be outside the normal parameters.

Ill investigate the helpline on this website if I can do so without using the phone, which I need to keep free.

PJoanne

Hello @pigeon

Good to hear that you are able to speak to someone today.🙂

You can email the lovely helpline people! helpline@versusarthritis.org and here is some more information about them.

https://www.versusarthritis.org/get-help/helpline/

All the best

Joanne

pigeon

Hi,

The on call GP said not to take any more until she has advice from the consultant, who she is going to email. She said it was a difficult drug to manage and that we really don't want me getting into a crisis.

It was such relief, she was straightforward and helpful.

Thank you for encouraging me to go back for medical advice and for your support generally.

frogmorton

Thank goodness for that @pigeon Well done GP!!!

I was going to say (apologies if I have already said) many of us have changed the day we take it anyway to one that suited us better or missed a dose due to an infection.

So I am pretty sure nothing terrible would happen if you had missed a dose while you found out what to do. I do however know what you mean about 'doing as you're told' by those who know. I does rather go against the grain.

I myself am doing the same with a different medication. Feeling quite guilty ATM!

Take care and please do report back.

If this happens to someone else in future this might help them

Toni x