Mycophenolate

[Lichfield]

Hi,

I’be recently started taking Mycophenolate. I have concerns about mixing with other people and precautions I take. I try to be extremely careful, but how do you get on with family members and friends meeting up indoors. I’m very mindful of covid/ common colds etc

I choose to limit the close contact I have with people to reduce as much risk as possible. I would be very interested in your views please.

Best wishes

[GGhere]

Hello Lichfield, I've been taking micophenolate for a year now and share your concerns about close contact with family and friends especially now when many people have already thrown caution to the wind even though the new Covid variant is circulating. I avoid crowds and always wear a mask to go into a shop - I don't shop very often as I do my groceries online and other things too. When it comes to family gatherings - I play it by ear - I don't want to offend anyone but I'm lucky as my family are considerate and aware that I'm on the extremely vulnerable list so there's not too much hugging etc and they've all been double jabbed. I assume you live in Lichfield - we sometimes go there to visit our grandson. We're in south staffs too.

[Lichfield in reply to GGhere]

Hello Betsie,Thank you very much for your reply.

It sounds like we’re all doing the same which makes me feel better and that I’m not being over cautious. The infection rates are still quite high and concerning.

My family are very considerate too which is a great help, very little hugging but everyone understands.

Best wishes to you

Take care

[Redwine53]

Hello Lichfield, I have been on mycophenolate for two years and I also don’t go out and mix very much. Like Betsie I do my grocery shopping online and wear a mask if I go on the bus or local train, where most people wear masks. The tube is horrendous though! I live in N London.If my daughters visit they take a lateral flow test first, as people at small family gatherings do. The doors to outside, and windows are kept open too.

It is still a worrying time as research seems to be saying that us on mycophenolate do not make many if any antibodies, so let’s hope the booster becomes available soon.

Take care Sue

[Lichfield in reply to Redwine53]

Hello Redwine53,

Thank you for you reply, very much appreciated.

Like I said to Betsie it’s all still so concerning and it looks like we’re all stuck with the same regime.

I’ve recently been put on mycophenolate so it’s all quite new to me. Thank you for your info.

Best wishes

Take care

Brenda

[hawkinse]

hi . i am a nurse and work in a care home .i wear a mask at all times people use me as an example of why PPE etc excists. i wear mask mask when out do lft 3 times a week and pcr swab weekly as part of my job anyway. i wont let the disease slow me down covid is yet another fustration added to the challenges of sc;eraderma and my outlook is not good and i do the best i can each day i get to wake up and look after othersgoodluck

[Lichfield in reply to hawkinse]

Hi Hawkinse,

Thank you for your reply.

Sending you my very best wishes to you.

I agree testing and PPE are essential.

Take care, stay safe and keep up the good work.

[johncot]

I've been taking mycophenolate for 2 years. 2 gm/dayI avoid crowds and always wear a mask in shops and public transport. I recently took an antibody test which showed I hadn't produced many covid antibodies following 2 jabs. I also saw on the news that this wasn't unusual for immunosuppressed patients. I just take sensible precautions. Good luck

😊

[Lichfield in reply to johncot]

Hi Johncot,

Thanks for your reply.

As you say, we’ve all got to take sensible precautions.

Best wishes to you

[bertie203]

I realise I'm a bit late, but I figured I might as well post in case it helps.

I'm mostly avoiding people ever since the pandemic started. The exceptions to that rule are: going to the doctors, and (at times when numbers were lower) meeting family members outside with masks on. I'm not sure if I'm being too cautious - but I figured it's better to be safe than sorry for now (after all, Covid will hopefully die down eventually... although it seems more like a question of years rather than months sadly - so I might as well avoid dying for the time being). And for the occasions when I do need to go indoors (i.e. doctors visits), I'm wearing FFP2 masks. (I know that opinions on FFP2 masks are mixed, but as long as you're conscious about not touching your mask and learn how to make it seal properly it should do more good than harm relative to a surgical or - forbid - a cloth mask.)

Unfortunately there's very little data on vaccine effectiveness for people like us, and the data I have seen isn't too reassuring (something like 50% of mycophenolate users don't get many or any antibodies). So I pretty much haven't changed a thing since getting vaccinated.

Now the thing is: I got my diagnosis last year, after Covid had already started. So I don't have any experience living in "normal" times. My current thinking is that even during normal times I would probably try to avoid public transport and open-plan offices during the flu season (which is why I'm trying to find a fully remote job), but I have to say my doctors actually aren't all that worried about me.

For a while now I've been joking about moving to New Zealand to be able to live normally again... but I don't think they're keen to take in people with expensive medical conditions (and mycophenolate isn't exactly cheap).