Covid protection advice/measures for Scleroderma

[bertie203]

I'm just curious: what kind of advice are you getting about Covid protection from your doctors - and more importantly, what measures do you actually follow?

I've got ILD, and take MMF. I've mostly received fairly generic advice - e.g. that I should wear masks whenever possible (specifically FFP2), and that reducing risks (e.g. working from home) is worthwhile. None of my doctors have really gone into much more detail than that - e.g. around personal social interactions and so on, and it's hard to tell if I'm being especially careful (I've pretty much avoided any indoor socialising all winter, get my groceries online, and have fortunately never had to go the office) or if my measures are normal for people with Scleroderma. I'm keen to hear what other people are doing.

[pino99]

Hi, I have the same issues and medication as you plus I am on retuximab. Had three jabs and waiting a few weeks after my last infusion to have the fourth. I work in education so have never worked from home. Have had covid twice, last time they gave me an infusion of neutralising antibodies at the hospital, which helped a lot. First time I was poorly for a couple of weeks, but it never went into my lungs. I have given up virtually all precautions except I don’t go to crowded places such as pubs and concerts. With the jabs and the new treatments I feel the risk is much lower now and not more than the flu or similar. My doctors have not given me any individual advice either, I think this is a personal decision based on your circumstances, perception of risk and level of risk you are prepared to accept.Best,

Pino

[johncot]

I take Mycophenolate and prednisolone. I avoid going to the shops when they are crowded and wear a mask when I do. I also try and maintain social distancing and use the hand sanitizer if its provided, although some shops have become lax in ensuring it is available so I also carry my.own.

Good luck

[Redwine53]

I think it’s all down to us to make our own decisions. My GP has not given me any advice and the rheumatologist says it’s fine to go on holiday! I wear my mask on public transport and in shops and try and keep my distance. Not many mask wearers about now, especially on the Tube, where I usually travel off peak and stand near the doors if I go out. I still have my supermarket deliveries.My friends are incredible and keep their distance, though a bit difficult if we eat out - quiet lunchtime places. So yes I am being careful, but balancing it with my mental health.

Good luck, sounds like you have a plan.

[bertie203 in reply to Redwine53]

Thanks, yeah I figure mental health is one of the major factors in the advice that is given. It hasn't been an issue for me so far, but I'm probably lucky - and it's certainly been a tough time for everyone, and even tougher for us with conditions.