Should I stop methotrexate?

225

Hi.i have never posted on here but i have read quite a bit and found it helpful to hear other peoples stories.what I have realised or more to the point just had reaffirmed is that alot of you out there have much much more to deal with day to day than I do and the fact so many of you do so with humour and positivity is a credit to you!I'm 45 and have psoriatic arthritis I have only been diagnosed about 2 years and inject methotrexate weekly.its helped me greatly however now that we have the covid-19 virus looming over us like a dark cloud I have decided to stop taking it as I feel I need to give my immune system a better chance of fighting this thing off should I get it!!it's not a decision I take lightly as i know how bad i was without it but i have 4 young kids and a wife depending on me being around and I just want to give myself the best chance of seeing them grow up!!sorry if that seems a bit dramatic but just now it's how I'm feeling!anyway enough about me I'm wondering if any of you have taken similar decisions (I know some of u don't have this choice) or am I being stupid?

YvonneH

Hi 225,

Great to meet you, I’m glad you found the site and that you have found it helpful.

This is the latest advice, if you check out the corona/covid19 thread you will find the link, or just go to the versusarthritis.org website

I take methotrexate/DMARDS/other drugs that suppress my immune system. Should I stop taking it? 

The current advice is that you should not stop taking your medications unless advised to do so by your rheumatologist or rheumatology nurse.

By stopping your medication, you're more likely to have a ‘flare’, which could make you more likely to pick up an infection.

If you have concerns about your medication, speak to a member of your healthcare team.

Please don’t stop taking it before talking it through with your health team, I'm lucky not to live in a big city and I work from home anyway. Try to minimise your contact with others outside the home and follow the advice re washing hands etc.

Take care

Yvonne

dreamdaisy

I've done the opposite. After a period off my meds due to taking penicillin I have resumed my meth and humira (I have PsA) for the following reasons:

I have a flu jab so am automatically in the high risk group regardless of whether I am on the meds or not.

Covid 19 will come and go. Arthritis is a permanent presence.

People recover from covid 19. They do no recover from arthritis, it is merely controlled.

People are not underestimating the damage that covid 19 can temporarily cause but everyone underestimates the long-term physical damage that an auto-immune arthrits, left to run rampant, can do.

There is absolutely no doubt that this pandemic is causing chaos, concern, confusion and crises of all kinds but my choice is to control the disease I already have and to avoid cntracting the other. It is not going to be an easy time but I know which monster I need to control for my present and my future. DD

225

Thanks for the advice it's a tough decision for sure but my priority has to be my kids.i know coming off methotrexate is going to most likely put me back maybe even make things worse than they were before but I need to give myself more chance to fight covid-19 it's not about me anymore.appreciate people taking time to respond and wish you all well.good luck.

andytait

Hi I’m new here but had Psa for 30 yrs. I’m on Methotrexate and Humira injections and worried about my ability to fight Coronavirus with my suppressed immune system. dreamdaisy you’re spot on and I have now decided to continue with my meds as prescribed. I feel it shows how great this medication has been for me that I could even consider stopping for a while. Just hope we can put this awful covid19 where it belongs so I can get back to my open water swimming in summer, thanks stay safe!

Terryr1

I had a chest infection in January which ended up with me being in hospital for a week, I was on intravenous AB’s so my methotrexate was stopped, I still had signs of a chest infection when I was sent home from hospital with another two weeks of AB’s, so still no methotrexate, it still hadn’t completely cleared up by the end of January ,so yet another course of AB’s this time a different sort, by the end of February it seemed to have cleared up, by this time covid19 was about, so as I hadn’t felt any worse for not taking methotrexate (now almost 4 months without it)I have decided to leave it out at least until this Covid thing is over, I’m probably in for a roasting when I next see my consultant by at least hopefully I will still be alive.

frogmorton

Hi Terry
Welcome to the forum from me.
Might be daft suggestion but have you tried telephoning your rheumatology team for advice Terry? They might reply in a few days given all this COVID stuff that's going on.
Are you on anything else for your arthritis?
I'm glad you are coping ok atm without your MTX at the moment of course. Long may it last.
Do let us know how you get on

dreamdaisy

You're welcome, andytait. Another thing to be considered for those who still have to work is that being immuno-suppressed means we can be ill and not know it as quick as those who are not because it takes us longer to produce symptoms. On the corona forum some have posted their irritation at being sent home from work, or being told they could not work, because they feel OK. I know that in the past I have unwittingly passed on coughs and colds because I wasn't feeling poorly but now? I am staying in to protect myself and honestly do not know how I could cope if someone caught it from me and died. DD

BiddyBee

Hi I'm new here also but after reading the initial post I have to say don't stop taking your methotrexate. I took the decision to stop taking mine is to me having RA, fibromyalgia ,CKD and asthma. I also suffered a heart attack in 2016 so I was thinking this virus would do me in for sure. It was a big mistake stopping the methotrexate. For the first 2 weeks being off it I was fine, 3rd week I was in pain but it was bearable. For the last week though I have never been in so much pain in so many places at once. I couldn't use my fingers or turn my wrists, my knees hurt really bad there were daysI struggled to even stand up. It affected my shoulder so I couldn't use my arm and I have new nodules pop up on my wrist. For 4 days I could barely turn my head at all due to the stiffness in my neck although I'm not sure if that was the fibromyalgia which also has flared up quite bad. I honestly thought to be in that much intense pain you would have to be close to dying. I had read that stopping methotrexate would see flare ups twice as bad. More like 50 times worse. I have been in absolute pure agony and there was only one way out I could see, take the methotrexate. So I did and slowly it's getting better day by day but I'd like to say to anyone thinking of stopping it, take it, because trust me not taking it isn't worth that kind of pain.

Stay safe and well 🙂

dreamdaisy

Crikey, is that what meth can achieve? I am so pleased you are improving and I hope that continues. Please let us know how you get on. DD

MAZZDDA

Hi all my first time on here im glad to find it and to know i can talk to others like me is such a relief i refer to the comment made about taking methotrexate i to take i was also toying with idea of stopping but i did consult with my rheumatologist and on his advice to continue if you go out make sure you wear a mask and only go out if you need to if you stop taking now it going to take a while to build back up in you system i have had arthritis rheumatoid and psoriasis as well since i was 15 years old and im 46 now and i have just now have had to finally give up work but i still manage to do things im just slower but i get on have to and please may i say thank you for reading .

[Deleted User]

Hi @MAZZDDA,

Welcome to the online community, it's great to have you here.

I see you've had over 20 years experience with inflammatory arthritis so your expertise is welcomed.

If you would like to comment on our posts about living with arthritis, I'm sure your advise would be helpful.

Please let us know how you get on, we're looking forward to your next post.

Best wishes,

Vikki