Coronovirus and methotrexate (Sorry more Coronavirus!)

[movewiththetimes]

Hello! I currently take 20mg of methotrexate, weekly. I'm about anxious at the thought of getting coronavirus. How do others on immunosuppressant meds feel? And what extra precautions are you taking?

This is utterly shocking. Why the hell did they make that announcement last night without making sure all the systems were in place?

I've stayed off work today and I'm trying to get further advice from my GP. I work in a supermarket, must have served hundreds of people yesterday. Do I go back to work or do I stay off? I can't stay off just because I feel like it, I need official advice

It's beyond, I just want to know one way or another. You definitely need to know working in a supermarket! So much confusion x

My GP has suggested that I'm high risk with mtx and need to socially isolate for 12 weeks. I'm gutted for my job, I'm a nanny and I love it and letting the parents down is so far from ideal. I'm trying to contact my rheumy team but the line is constantly busy

I've just spoken to my GP. She said they are in the dark as much as anyone else and the only information they have so far is what was released yesterday.

She agrees that the advice is contradictory and said that I should self certify for seven days by when, hopefully, better advice will be available.

I have a telephone consultation with theumatologist on Friday anyway, so I'm hoping they will have more of an idea.

I did a search for methotrexate and here you all are.
I take 20 mg once a week for RA.
Are high risk people supposed to be contacted ?
RA isn't on the list , so are we not high risk ?
I'm working , self employed , 12 weeks self isolating would be destroy my business and bankrupt me.
I'm just joining you all and marking my place in case of any developments.
Stay safe folks

I'm off to work again in a minute. I work in a school and I am the Cover Manager. Just imagine what my work load is at the moment! So far, we have 12 teachers self isolating and I've had two emails from others already this morning.

I may be fit and well (as much as a RA sufferer is!) and we may not know whether we should be distancing ourselves or not, but the strain and stress of my job is almost at breaking point. I could hardly walk when I got home last night and I haven't felt that tired for a long time. My health will suffer, regardless of any possible virus I might catch!

The Head Teacher actually asked me to advise him whether we should go partial closure or not yesterday. He chose not to for today.

Today I will tell him, we go partial closure or he's going to lose me. We can't keep on like this.

I understand the reasoning for not closing schools too early, really I do, but I've got to say, they are on their knees now. It's got to change.

Gosh, I'm a bit woe is me this morning! . Onwards and upwards.

I’m on leflunomide & Hydroxychloroquine & have come off them for now but already joints are flaring. So will probably need to go back on them. So unsure what to do.

@CanIHaveAPenguinPlease were you advised to stop meds? Everything I've read says to continue as a flare up make us more prone to catching infections

Thank you for responding.

I’ve been told in the past to come off them if unwell. I have other autoimmune conditions as well.

I’ve had a sniffle with a tickly cough so obviously a bit concerned about the virus. I know it’s unlikely to be that though & just coincidence. There are no phone appointments available with my rheumatology department at all for me to enquire. Ive emailed in & waiting for a response. Just musing about what’s best to do really!!

Im self isolating but how long for!! 2 weeks or 12?? will need lots of this. Well obviously not on the meds but very tempting right now!

Not on MTX but I have RA which has flared badly since stopping chemotherapy. I'm on hydroxychloroquine and now prednisolone which has finally stopped the flare. Also have lung damae so I feel I'm staring down the barrel a bit.

It's my mum I'm worried about. She works in a nursing home, She takes 20mg of Methotrexate a week but she's also asthmatic and is on a blue, Brown and pink inhaler. No one can seem to tell us exactly what she should be doing. Stopping methotrexate? Just going to work & nowhere else? Or completely staying in for the next 3 to 4 months. We all really need somewhere to give us proper advice!

Just watched Sky News. The USA are trialing a drug which shows signs of being used in a vaccine. It's hydroxychloroquine....

How ironic would that be, for those of us taking it, as we all sit here with no idea whether we are in the at risk group or not.

My consultant rang me back yesterday evening to say that with a suppressed immune system this left me at risk and to isolate. I'm on 20mg methotrexate. This is the advice I was given, and not in anyway advice I'm passing on, please check with your own specialist. It's going to be a few weeks but we can get through this

@MaureenMLove that would be fantastic if it’s the case

@movewiththetimes glad you’ve heard.

Link -

www.google.co.uk/amp/s/www.forbes.com/sites/lisettevoytko/2020/03/19/trump-says-fda-approved-anti-malaria-drug-chloroquine-to-test-as-coronavirus-treatment/amp/

twitter.com/InfectiousDz/status/1231357670143254528

This gives a bit more detail.
Of course this may not help those of us who already have over active immune systems.

Hi, has anyone had any more info on whether we are in the at risk group that needs to stay in 100%.

DD is on it and has been told to self isolate for 12 weeks. She has 4 children and 2 dogs and, after today's update, isn't sure if she's allowed to take her dogs out. She lives semi rurally and can easily do this without any human contact.

Should have said she was told by her consultant.

Ridiculously, I feel like I'm making a big deal out of it and I shouldn't because I'm not that ill. It is an 'invisible' illness for the most part - for me anyway.

However, the underlying niggle with me is that I DO take Mx and it IS used in chemotherapy, however small the dose and there's a very good reason why I have to have a blood test every other month, before I can get any more tablets.

Anyway, I can easily stay in all week, until I do or don't get a letter. I've got new glasses due at the opticians on Tuesday and my friends have very kindly offered to collect them for me.

Whether Specsavers will stay open or not I don't know? Some people will be desperate for prescriptions I suppose? I can make do for 12 weeks, but given the hydroxychloroquine effects eyesight, am I a special case?

God, so many unanswered questions!

DH is on methotrexate so we are self isolating and he stretching out the frequency he takes it. He has PA rather than RA so for him is weighing up coping with the increase in pain and potential joint damage versus improving his immune system.

🙈

We are hoping our teen doesn't find a job in a supermarket (cafe closed so no job) as she would be certain to catch CB-19 and being it home I reckon.

I hadn't spotted you guys. I'm on Mtx. too and haven't heard from either of my consultants. I was told to stay on it a month ago, but that seems like a lifetime ago now.

It's really difficult to accept that it makes me vulnerable, something I've never considered myself as, especially as it has been a transformative medication for me.

Are we ok for our 'living-with-us' family to do things like get milk for us all once a week?

Yes so long as they are careful, keep distance, handwashing when they get in. We are leaving stuff in bags overnight then wiping down...

I’m glad to have found you all here too. I have RA and take hydroxychloroquine and 20mg methotrexate by injection.
I had a rare appointment with GP on Friday and was told to self isolate for 12 weeks.
I find it all really strange as I am normally fit and well, my RA is well controlled and few people know I have it. I feel a bit of a fraud. However I do realise we are at more risk with a weak immune system, also my DH is frontline NHS so our family are all at more risk.
It’s going to be a long 12 weeks though.

Well let's keep talking. Nice to see you on here Kitten! I suppose anyway, I'd rather no one I knew had to take any of these tablets!

That's exactly what I feel like! A fraud! That's what happens when you have an invisible illness I guess.

On the upside folks. Relaxing and looking after yourself, is exactly what our diseases tell us to do, but we just keep on going and never give up.

And with the added bonus of having Kitten on here, we'll know how long it'll be, before we can enjoy some good weather!