Mycophenolate and possible Covid

[OldTed60]

Hello. Wonder if anyone knows whether it’s advised to keep taking Mycophenolate if someone in my household has just tested positive for Covid? I did phone the number on my letter and told to phone and start process to access anti virals if I’m positive but so far today and yesterday negative. But so was my husband until this morning despite symptoms all day yesterday.

I have a registered PCR kit so got courier coming tomorrow and will keep at lat flow of course but couldn’t get answer about whether to keep taking Mycophenolate meanwhile? I’m on the maximum dose and yes a bit symptomatic but then it’s hard to tell as always am ie dry cough silent reflux headaches flu like sniffles due to weather and hay fever etc

Have scleroderma/ MCTD/ Sjogrens so will ask this on lupus site too as more people there so thought best to ask on both. None of phone line people could answer this of course and Sunday so no one else to ask. I’ve taken my morning dose as don’t want a flare up.

[Hollyhobbie]

Hi, I'm in a simular position . OH is positive and I'm still negative. I've stopped mycophenolate on my own accord. I'm like you have cold symptoms anyway , coughing sneezing etc.

[OldTed60 in reply to Hollyhobbie]

Thanks. So far still testing negative and husband is not so bad so I’m hiding from him while he goes about his daily business and we mask up if in same room. I did a lateral flow and my PCR home test kit today but lay flow very negative. I’m keeping low profile as I really want my Iloprost a week on Wednesday. Despite heat it’s not that warm where I live in Scotland and yesterday I was the only one walking dogs with white /blue hands and long sleeves - got some very odd looks!

[LucyJean]

Hi there, if you get covid then I am sure they will advise you to stop the mycophenolate and start the anti virals. But realistically if you stop taking it then it would take several weeks of not taking it to have your immune system more active again and by that time you would already have got it anyway if you were going to.. We all know when you start these things it takes up to 12 weeks to know if it is having any effect. It takes time to get into your system and so it also takes time to get out of your system. It is a rock and a hard place situation! My friend has banished her husband to another bedroom and is avoiding him as much as possible, hand hygiene and mask wearing has also been introduced. She just stopped short of moving out and leaving him to it with instructions to disinfect everything. I would do all sensible measures to stop yourself getting it, keep testing with your lateral flow tests, I would call your special nurse if the hospital you are with has an advice line or you could call the rheumatology department you are with to get advice, or I think the Royal Free might have an advice line you can use. If you go onto the Royal Free website and search scleroderma you will see they have dedicated pages. There is lots of info about covid but also some telephone numbers.

Hope that helps and I hope you don't get it!

All my best

Lucy xxx

[OldTed60 in reply to LucyJean]

Thank-you Lucy. Yes - since writing this we have decided same as your friend. I’m still testing negative today and we are keeping good distance observing all the strict rules we all know now so we’ll re hygiene and masks. Fortunately my husband seems to have Covid lite and is actually feeling better than me I think - so he’s outside digging! I had terrible silent reflux cough night despite meds so I’m hiding and he’s got the run of house! I think I can avoid this thing now if I haven’t got it off him yet as we spent a lot of time in car and same room unmasked in days prior to his positive test - so if I was going to have it from exposure to him then I think I’d be positive by now. Fingers crossed I can avoid it and go ahead with it Iloprost a week on Wednesday as my toes are a bit ulcerated just now.

I’ll phone my rheumatology help desk in an hour just to give them heads up as slightly complicated for me as GPs are under a different NHS board to my hospital and I fall under GP postcode for anti virals - in another hospital much further away where they don’t have any of my notes. Fingers crossed I won’t need the anti virals this time but it’s good to know who to contact if I do in future. X

[Jen3131]

Hi, When I had Covid, I checked with my rheumatology dept and I was told to stop taking Mycophenolate for 2 weeks. I guess it’s always best to check with your rheumatologist as we are all individual with our condition/medication regimes etc. I did not qualify for anti-virals as my dose/meds did not meet the criteria. Take care.

[Feelingpants]

Your going to need anti virals & stay well away from the person with covid contact your rheumatology consultant asap I'm also on mycrophenolate

[OldTed60 in reply to Feelingpants]

So far I’m testing negative so hoping I can stay this way by staying away from my other half. I’ll contact rheumatology dept when they open later 🙏🏻😊

[Redwine53]

I am on the myositis Facebook site and everyone who gets Covid has been told to stop mycophenolate for one or two weeks, as well as taking antivirals.

[OldTed60 in reply to Redwine53]

Thanks - yes I’m a silent member of that community too and read the same. But was wondering what to do if not yet testing positive despite exposure to family member who is very positive. I’m not getting anywhere with finding out how to access anti virals either as I sit between healthboards and my GP practice says nothing to do with them. One board favours monoclonals while the other favours paxcovid but both advise that, as I’m a “very complex patient”, I should be guided by my consultant if i test positive - who is away on annual leave presently and is under a different healthboard to my GP practice.

So I think I’d better just avoid getting it if humanly possible😷😷😷!

[Redwine53]

That sounds so complicated OldTed60 and let’s hope you avoid Covid. Do you have a rheumy nurse you can contact who may be able to help?

[OldTed60 in reply to Redwine53]

Thanks. Yes I was contacted by a rheumatology nurse (never been assigned to one so she didn't know anything about me) this afternoon. She gave me a number to phone if I test positive so I feel less anxious about this now.

[Redwine53]

That’s a relief, thank goodness.