Methotrexate - black moods

[JudithWarrior]

Hi all,

my rheumy suggested I took methotrexate as i've not been able to get lower than 3 mg on pred for quite some years now. They are freaking out saying I have to get off the steroids. Nobody wants off them more than me - they seem to forget that!

Anyway, I reluctantly agreed to try it and after 6 weeks I found myself struggling with terrible black moods and just crying everyday unable to pull myself out of a black hole. My life is tough and I've had an awful lot to deal with the last 3 years and yes I get low sometimes but not like that. I told them that I couldn't function with methotrexate if that was what it was going to do to me. They said leave it off for 3 weeks and I gradually felt much better. Started it again on Friday last and here I am again - unbelievable low and it's horrid to feel this depressed and dark. I'd just like to know if anyone else has had this same experience with methotrexate as I'm tempted to forget it and just do my own thing. I'm so sick and tired of nhs rheumys and their awful drugs. I'd rather manage it myself and find alternative ways to keep trying to get lower on the steroids. I'm back down to 3.5 mg and so far so good. I'll stay here a while now before attempting a slow taper for the next 0.5mg - I'm ever hopeful!

Any thoughts?

Thanks

Judithwarrior.

[piglette]

Quite frankly I don’t know why they are wasting the NHS budget on Methotrexate if you are on 3mg. It does not agree with everyone and it does not even work for everyone. I would tell your doctor that you cannot continue with it due to the side effects. You can always try every so often to drop the pred 0.5mg, one day it might happen.

[Mayadill]

Sounds as if your life would be a whole lot better without your rheumy. One practical question: can you get the Pred you need from your GP.?

[PMRpro Ambassador]

Any doctor who wants a patient to take methotrexate when they are already at 3mg needs their head read! Just say NO, and if they can't accept that, demand referral to another who WILL accept it. Will your GP manage the prescriptions for you?

Professor Dasgupta, formerly of Southend, UK and a renowned world expert, told us 3 years ago during a seminar, that he often keeps patients at 2.5-3mg longterm as it reduces the incidence of relapses and a return to higher doses. If it is good enough for him ...

[JudithWarrior in reply to PMRpro]

This is music to my ears and gives me the confidence I've been needing to say no! Thank you. Is Professor Dasgupta a world expert in PMR?

[Jackoh in reply to JudithWarrior]

Professor Dasgupta has retired now I believe but as PMRpro said he was a world expert. If you can get your steroids from your GP I think I would drop your rheumatologist and go solo at your own pace and in your own time. Many of us would love to be that low in dosage. I feel ridiculous to start you on methotrexate at this stage. 💐

[PMRpro Ambassador in reply to JudithWarrior]

GCA predominantly but also PMR and definitely the use of pred. His name is still all over guidelines and articles on both, retired from the NHS he may be, inactive he is not!

[Body_bonkers]

Really feel for you Judith but good link was spotted. You know yourself better than any rheumatologist by now and managing it yourself sounds like an option. I'm still early stages but sadly learnt not to trust them. Hopefully the clouds lift soon

[Megams]

~My experience with Metho nothing short of a nightmare - depression like I had never experienced - follow your gut level feelings + tips and sound advice from the other threads here.

Thinking of you ~

[oscarandchloe]

I have refused any drug other than Pred. I follow the DSNS tapering schedule after 'sitting' at 5mg for well over a year as I needed stability for hip ops. Taken 6 weeks to get to 4 1/2 mg but feeling fine now on lower dose. It's your body, you care for it, no-one can make you take a drug - say NO (and say why with confidence).

[Temoral in reply to oscarandchloe]

I have a phone appt with my rheumy on Monday, which itself causes stress, because I suspect he will be pressurising me to add methotrexate to the mix as I have had problems getting below 5....currently approaching 4.5mg, but he expected a faster reduction by Monday. I hope I can manage him, and be allowed to go at my own pace too. Why are so many Rheumys like this?! We are people, not numbers on their books....

[PMRpro Ambassador in reply to Temoral]

My reply to JudithWarrior above applies as well - at 5mg it is crazy to add in MTX with all its potential side effects. And top rheumies agree ...

[Temoral in reply to PMRpro]

Thanks PMRpro...I intend to tell him that...and Dr Dasgupta's opinion. It always helps to have back up😉

[Sharitone]

If MTX didn't do anything for you...then why are you being poisoned?

I am sick of NHS rheumy appointments - they give you a drug, or increase the dose, then say 'I'll see you in 6 months' - which turns out to be 8 because there are not enough appointments. Which leaves long-suffering patient doing just that. Very frustrating when all you want to do is get some of your life back. My second rant of the day!😆