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?

They give you three months at a time?? I only get a month.
Having stopped it twice before I know that just as it takes 3 months to fully work, it also takes 3 months to wear off.

I'm sorry to hear that Quirrels. You must be feeling pretty upset by it.
I'm prescribed mine through the hospital and have an appointment every three months or so. Unfortunately the next appointment has been postponed indefinitely, so I'm going to have to call and hope that the nurse service still exists in order to get my next prescription and blood test forms.

Sorry, just checked. There's 56 in a box, so not 3 months, but still pretty much 2 months.

I'm not sure if this is any help to anyone but after I came across this thread I looked into methotrexate further as we were totally unaware of the issues surrounding it.

Dh is on the injection for RA. I first contacted arthritis Ireland and they confirmed with me that it does lower the immune system and people on it are more likely to pick up coronavirus. He was advised to either work from home or practice social distancing in his job if not possible to work from home. He was told he must take regular breaks in work, no contact with people and no public transport. As dhs job involves working with the public and taking public transport and he can't do it from home he knew he may have to stop working.

Dh rang his gp and they did a consultation over the phone, the gp insisted dh not stop his medication, he wrote his job a letter explaining about the methotrexate and how it effects the immune system. The gp then signed him off work and this allowed dh to claim illness benefit.

Thank you Lipz. . Glad your DH has the proof he needs to stay safe.

It seems it largely depends on your local trust rules really. I live on the boarder of 2 and one of my RA friends is with the other one to me.

She was diagnosed pretty much at the same time as me and yet her care is vastly different to me. She has to go to the hospital every month for her medication, whilst I transferred to doctor care a year ago and I just need to get a blood test every 3 months and then order a repeat prescription. I only see my consultant once a year, unless I need her sooner.

Methotrexate care is different too. My friend takes exactly the same tablets and dose as me, but she's told under no circumstances should she touch them! She has to count them into a pot and tip them straight in her mouth!. Mine says, 'take 6 tablets'. That's it!

I think the safest thing we can all do, is absolutely minimise the time outside near anybody.

Strangely, living on my own, I feel infinitely safer because nothing is getting in to my house! I have a sign for the door, if I'm expecting a delivery'. Please knock and leave on the doorstep.' I then collect, wearing a pair of gloves, empty and throw away packaging and throw gloves and wash my hands.

Sadly, I have to treat DD the same, when she delivers things, but I do open the door to speak to her, once she's standing back at her car!

I phoned up the clinic. Apparently it hasn't been postphoned, just converted to a phone appointment. So I'm glad I checked. I'm to keep taking my medication as prescribed. It was so nice to talk briefly to a lovely medical member of staff. I felt like we haven't been abandoned.

I've also checked that my sharps bin will be collected as normal.

Can I just ask if people are still going for their regular blood tests due to being on methotrexate? My son is due for his and I don’t want to take him to a hospital at all but his consultant is saying he needs to have it done.

It is really important that he has it done, even more than ever. One of the things they look at is the effect on the immune system - you really want to know how that is holding up.

I'm dreading having mine after avoiding people for so long. But it will need to be done and hopefully the phlebotomy service will be taking great precautions.

I literally had my bloods done the week before lock down, so I'm OK until the beginning of June now.

I had a text message from the Government this morning, to say that I'm in the vulnerable group and need to stay in. It explains why I got an email from Asda on Saturday to say that I've been given a reoccurring priority slot too. I guess my doctors or hospital consultant have recorded me somewhere.

The only thing that's particularly vulnerable is my index finger that keeps pressing 'buy now' on Amazon or EBay!

I wonder if I'll get a message then? Is it because of your methotrexate Mo? I'm on a much higher dose than you.

actually, I'm not that much higher than you in dose, but on the injectable sort.

I'm not really sure why I got it! I assume it's because my NHS trust thought I was worthy! I'd phone them, but really they've probably got more pressing queries to answer!

I'm just grateful for the fact I don't have to ask DD to fetch and carry for me quite so much now.

I got another Government text message overnight to say I'm not even supposed to go outside to put the bins out! I assume I'm allowed in my garden. It's completely surrounded by 6 foot fences and a locked gate, so I assume that's OK.

Crikey, I'm glad that I'm not on the list.

Is this your first text @MaureenMLove ?

If you dont mind me asking. How many mg of methotrexate are you on and do you take other meds with it?

I'm wondering if they are now only just sending out more texts now.

Hi, I 'only' take 15mg a week of Mx and then hydroxychloroquine every day. As I say, I wonder if it's something my doctor has reported. Maybe although it's mostly under control, I quite often still suffer with flares and your immune system is even lower when you're having a flare?

Again I think, it depends on the vigilance of your own NHS Trust.

I bet it's because you are on a combo.

Hi, I also got the government text yesterday, saying to stay in for 12 weeks (with the bins message today!). I'm on 20mg MTX and nothing else. I'm confused because on Friday I got a detailed letter from the NHS where you had to self-score your risk level and I got a score of 1 (as in low) out of a possible 3. The outcome was that I had to observe "strict social distancing". Then a few days later, this text, which is asking for full on shielding. So I'm a bit confused. In any case, we all know there could be some extra risk and should apply common sense - easier if work and responsibilities allow of course!! I'm in Oxfordshire under the Nuffield Orthopaedic Centre.

I'm actually keen to know if anyone else on MTX has experienced this: - I frequently experience that fighting off a virus feeling as part of the condition. Since being on MTX, I feel like I'm "coming down with something" very regularly, but actually, the exhaustion and fatigue lasts around 24 hours and I rarely get the cold or virus. So all in all, things are positive. A week before lockdown, I had this feeling, but much much stronger than ever before (with prickly grabbing feeling in my throat, and a moderate burning sensation in my lungs, along with usual headache and jet lag feeling) and it lasted for a week. I have it again now. I'm wondering if I'm fighting off COVID19 and if anyone else had felt the same. Could all be in my head of course. I have no temperature or cough but really just want to lie down in bed.

Thanks for responding.

Hmmm I actually take the same meds as you @MaureenMLove mine are 15mg of methotrexate weekly with 400mg of hydroxychloroquine daily. No text or letter here though and I am still having 3-6 months visits with my consultant at hospital even though they just passed over my blood tests to gp am still having to see consultant.

My flare ups are constant too

It sounds like it might be down to consultants discretion, with some consultants erring on the side of caution.
So when did the 12 week shielding actually start? Or is 12 weeks bogus? Some people started a couple of weeks ago.
I've not had any info about my next appointment converting to a telephone call. Its in three weeks, so hopefully it will do so.

How do you two feel about being on Trumps favourite cure? Maybe you are at less risk

That's the irony Kitten! I am known at work for being the only member of staff who has not had a day off for the whole 13 years I've been there. My job is about staff absence. And now, if Trump, comes up 'trumps' with the hydroxychloroquine, how ironic would it be that I've been immune the whole time!

It's not clear whether the 12 weeks starts now or 3 weeks ago tbh, but given that I think we're all going to be very restricted for a good few weeks yet, I'll not worry about it!

Sorry @Hunchmum1 totally overlooked your post. Methotrexate does make you very tired especially for me when I first started and also the day and day after I take it. I dont ever feel like I'm fighting off a virus though. I just get some nausea but my folic acid got increased which helped that a bit. I suggest you rest up but also contact your consultant or gp if you feel worse. They are the only ones who can advise you and I always say go with your gut instinct it is never usually wrong imho!

@OhYouBadBadKitten I think you are very right. It must come down to consultants. I just got my meds before the lockdown and think I may have a blood test coming up I'm terrified to go get it. Getting to and from whenever they are giving it is not actually shielding and also the others going to get theirs hmmm. Oh and Trump says that about hydroxychloroquine but if this was true we wouldnt have all these people dying so I take that with a pinch of salt.

So the answer is my doctor deemed me vulnerable. I've had a letter from them this morning. The line from them is, 'those on immunosuppressants, sufficient to significantly increase the risk of infection.'

My son has just received a letter from our GP saying he must shield for 12 weeks, he has juvenile arthritis and is on 25mg methotrexate once a week which he injects. I was only speaking to the hospital 2 weeks ago as he was due his blood test and I hoped they would postpone it but they said he needed it doing. So took him last Tuesday and then got this letter today which is dated last Tuesday saying he shouldn’t be going out anywhere! So now I’m worrying as up until then he hadn’t even been out for a walk since the week before schools closed.

DS is on azathioprine and Humera for UC and received a text weeks ago saying he was to stay at home for 12 weeks as he was in the shielded group.

I’m on 20mg Metho and have had the same advice from my consultant as Gemma above.

It puts me in the medium (not high) risk category. I’m avoiding public transport/shops but take dd for a walk in park/streets. Consultant thought that was fine.