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?

My consultant eventually wrote to me and suggested shielding, but it's not official and my gp thinks that I should still go out for walks. As my gp has a more holistic view of me I'm choosing to go with his advice.

How is everyone doing?

I'm doing OK, Kitten.

I'm almost half way through my time. Still managing to find enough to do every day to keep me going. Contact with parents and school helps to feel part of the school community.

I still feel like a bit of a fraud, being shielded, but I've come to the conclusion that I'm very lucky that my GP is efficient enough to look after me!

The week before last, I completely took advantage of the nice weather and sat in the garden for most of it! DD came by a few times and sat at the end of my garden, until the shadows came across, then left! She brought her own drink in a flask, but couldn't drink too much, in case she needed the loo and she wasn't coming in to my house to use mine!

This week, the weather has been rubbish, but I'm hoping that will change, oh wise one??

Yes, the weather does look like it's gently on the up :) I'm quite hopeful about towards the end of next week being lovely.
Today has been nice. A little cool, but I'm working in the garden in a t shirt. (stopping for tea at the moment.

Does anyone know if people on methotrexate are included on the new revised extremely vulnerable list? The new one issued by the government

Is there a new document? I don't know. I honestly don't think I'm that much more vulnerable than anyone else, I just think my GP is being extra cautious. That said, my brother who is with the same surgery, has T1 diabetes and hasn't had a letter.

I really want to know where we're going with the 12 week shielding thing, once BJ makes some changes to social distancing on Sunday.

I didn't know there was a new document.
i think the same Mo, I think it is over caution as well. I pick up bacterial infections more easily than most, but I don't seem to pick up viral infections very often.

What on earth is going to happen next? I don't know if we even know when shielding ends for people given randomized dates that people seem to have.

Exactly, when will I be let out? It is only a 'strongly advise', so I'm thinking if school will let me, I'm going back with everyone else.

Despite the medication I take and the fact that I have a low immune system, I am never bloody ill! I'm the first point of call for 1500 snotty, sick teenagers and never catch anything!

I will proceed with caution, of course, but I need to see my colleagues and be useful again, before we break officially for summer.

(There's only so many crochet things I can make, before I turn into that crazy old woman who crochets and talks to all the cats in the neighbourhood )

I got a shielded text today to tell me I'd been identified as someone who should be unless a health professional says otherwise, I'll be getting a letter in the post and to remain shielded until 30th June.

I didn't see this thread before.

I'm on a biologic with mtx and I never got a text or letter.

It seems to be totally random wether people get one.

I forgot to come back and say I got a shielded letter also. It said 12 weeks from the letters date.

On the plus side, I definitely know which way the i and the e go in the word 'shielded' now

I am so confused.

I got the text yesterday and another today advising me to eat, sleep and bathe alone etc. I didn’t receive anything at the beginning of lockdown.

All previous advice had put me at increased but not high risk. I’m on 20mg methotrexate but no other medication, for PA. No other conditions, I’m 41.

I can’t social distance from my children!

I think you just have to take it, that the Government are sending these letters out as insurance for them now. If the worst should happen and you fall ill with it and god forbid the worst happens, you were warned. It's just so random now.

According to my daily diary that I started on my first day of lockdown, I am on day 48, with 47 days to go until the Government advises that I can go out. Of course, all along they've said 'at least' 12 weeks, so that could change. Who knows.

I don't believe BJ is going to make that many changes tomorrow to be honest. I think it'll be more about getting businesses up and running again and not about social distancing being relaxed.

I managed to adjust my supermarket delivery slot yesterday. I had it for 10am on a Friday morning and it occurred to me that even if I am allowed back to work, I would still want the delivery, as I have no idea how the supermarkets are running because I've not been in one for months! I've got it for 4pm now, so after work, should I ever get back there!

Did you manage to get the slot through the shielding list? At the moment mine are still very spotty. I've managed to get one for two weeks time.

I agree, I don't think there will be many changes tomorrow. I think there were going to be, but they got new data in.

Well although Asda emailed you say I was priority, it also said that there still might not be slots available.. Think I was just lucky that my erratic sleep pattern meant I was awake at the right time one day!

Completely off topic for a minute - a memory from 9 years ago has just come up on my Facebook. It says, 'I've just been chatting to Sir Steve Redgrave!' I believe you were there too Kitten! .

My son is on methotrexate (12.5mg) for eczema and psoriasis and I still haven't had an answer on if he should be shielding. I've called all the numbers and his nurse at his last bloods said the consultants have stated patients should only leave the house for blood tests or to collect medication if it can't be delivered. Based on everything I've read and the advise out there he should have got a shielding letter.

My husband is severely asthmatic and only got his letter this week. He called the gp and the receptionist said she has never heard of shielding and had no clue what he was going on about. I had to call them too when I read that immunocompromised patients experience different symptoms of covid to other people and to call the dr for more advise. I had to guide the receptionist over the phone to which section on the nhs website stated this information and she printed it off to ask a dr and distribute to other staff.

I wish they would sing from the same hymn sheet. There is so much conflicting advise. I don't know if I should be allowing my son to go out for a walk with us or if he shouldn't be leaving the house at all except for his bloods? He has another test on Monday but I doubt there will be any more advise his nurse could give us.

I have come to the worrying conclusion that nobody knows anything at all about the risks level and it is all total guesswork. That makes sense really, considering this is a new situation. I would prefer honesty if that’s the case. If my doctor said “to be honest, we don’t know how high risk you are, be as cautious as possible until we have more research” that would be better than this.

I agree, I'd rather the professionals said, 'we're not really sure'. I've come to the conclusion that you and your level of hygiene has to be the thing you focus on.

I am advised by the powers that be not to go out at all. However, my condition means I need to move for longer than 5 minutes up and down the stairs and around the house and doing TV workouts are too hard for me. I need to get my joints moving for at least half an hour and walking is the only thing I can do comfortably.

I am therefore going for a long walk, most days, but I do not touch a thing or get within even 5 metres, let alone 2 metres of anyone. I can open my front door, without touching anything and in any case, no one has touched the handle on my door! I wash my hands regardless, as soon as I come in and to be honest, because I've just been for a long power walk, I get straight in the shower!

DD has been sitting in my garden. She doesn't touch anything I touch, she brings her own drink and doesn't sit near me. Another couple of friends also stopped by for a drink yesterday. They brought their own, sat in the garden and left before they were desperate for the loo, putting their rubbish in the wheelie bin as they left.

I do not believe I am putting myself at risk by doing this, but I do believe that my mental health is better, for having some real life company!

As an aside, how many times over the last 20 years or so, can you count where the weather has been bloody glorious for both Easter and May Holidays!! Bloody typical!

Not sure if this is helpful (I hope it’s reassuring), but I’m on another biological, Infliximab and had Coronavirus 7 weeks ago. I only felt really dizzy and fluey one day and the cough wasn’t too bad. Shortness of breath was a bit scary as I’d never experienced it before. Anyway, my symptoms were pretty much gone after 2 weeks. So although I was told by consultant to consider myself moderately vulnerable, I actually had the virus mildly. On the other hand my very fit, 100% school attendance child aged 11 year old had far worse symptoms and is still suffering from post viral effects now.

@Scampersaur did you have a Covid-19 test?

Just received an email from my Rheumatologist.

He said that some of the government advice has been confusing but that if I am taking one drug (mtx) and I have no other co-morbidities then I should be social distancing, not shielding, in line with BSR advice.

Feeling much better now. I hope this advice applies to some of you too.

Only just seen this but I'm on 20mg of mtx for RA. I've had so many confusing messages about which category I should be in! I thought I was in the more vulnerable category, but not shielding, so was surprised to get an email from my GP to say I was to shield. When I queried this with them I was told that it was because I was on mtx. I spoke to the practice nurse when I had my blood test and she said she didn't think I should be. I then got the government text message last week to say I should, so total confusion!

I had been looking at the BSR website which shows it is not the case according to their risk stratification guide, if you are only on mtx and it is well-controlled, which mine is, as it puts you in the middle group, as some others have said, not shielding. I finally managed to speak to my rheumatology nurse who said I was not in the shielding category and my GP also confirmed the same. I am more vulnerable, but do not need to shield. She said there was confusion at first when the government mentioned 'immuno-suppressants', hence the GP sending the first letter to everyone on an immuno-suppressant drug.

It does seem that there has been a lot of conflicting advice about this. I guess it does vary from person to person, but am glad I finally seem to have got some clarity!

@cookiemonster05 I am on 15mg for eczema, asthmatic too, and didn't get a letter.

I am presuming mx in my case was too reduce an overactive immune system, and carrying on with just the usual restrictions

I've suddenly got cabin fever.

If he hasn't suggested any relaxing of the social gatherings thing, to at least a few select people before July, he's not going to relax the shielded group any sooner is he?

I can't stand the thought of not seeing any of my colleagues before September! I love school, I love my colleagues and I love going to work.

That's really tough. I'm not surprised that you are feeling stuck at the moment Maureen. To see everyone else being allowed a little more movement, but not being able to join in is tough. I think we need to be prepared to go through til the end of June, then revisit the idea. That's just next month and we are nearly half way through this month. Hang in there.