Isolating with Actemra and Pred

[Bummed24]

I am curious to know how those of you taking Actemra and Prednisone manage events such as theater shows, movies, etc. in light of our immune suppression. I have been very careful over the past months, but am wishing to attend a few Christmas shows. Currently, flu and Covid rates are low in my area. It's a risk to attend. But sometimes I wonder if it could be relatively safe if I mask, and avoid mingling in the crowd.

[PMRpro Ambassador]

I haven't yet knowingly had Covid. I have been on pred for 16 years and Actemra for nearly 3. I have been on the train/buses regularly and while I don't travel much by air I flew from Innsbruck to Manchester via Frankfurt and back with several hours in a crowded Frankfurt airport this time last year. I went to a large and packed Edinburgh Fringe event this summer. When on transport I used to wear an FFP2 mask but gave up several months ago. I used one on the plane but totally forgot for the Edinburgh event. I do usually have one in my bag now if I felt the need.

It depends on the person of course but I don't think we are anything like as badly immunocompromised as we often fear. And using an FFP2 mask reduces the risk by over 90%. And employing the other measures like hand washing and not getting too close to people with "colds" helps too.

[Bummed24 in reply to PMRpro]

Awesome and encouraging! So glad you have stayed healthy.

[Koalajane]

I still go to the theatre and on planes etc. I haven’t yet caught anything from these events. I don’t seem to get colds so try to enjoy my life as much as is possible

[Bummed24]

Even more good news! So glad you can enjoy some of the events that make life worthwhile.

[LemonZest11]

I have been on Actemra since 2020 and pred since 2018, with the exception of one pred-free year recently, back on it now. I have had covid twice and each time the impact on my health was minimal. I have mentioned before that I’d rather have covid than the flu. Apart from covid I have had not one event of infection or illness. I go wherever I choose, public transport, overseas travel, cinema, concerts, etc., and it’s been absolutely fine. That’s not to say that everyone might be so fortunate. Actemra gives me a ridiculously low neutrophil count but a haematologist, just last week, explained that what I do have are “healthy” neutrophils, unlike those of recovering cancer chemo patients and that I shouldn’t worry at all. So it’s up to you but it seems that most of us on Actemra have been just fine.

[PMRpro Ambassador in reply to LemonZest11]

That's interesting - apparently mine have never fallen. But one doctor wanted to use a painkiller that also lowers neutrophils and I though that was a bit risky.

[LemonZest11 in reply to PMRpro]

I guess if it works ... The Rheumatologist was concerned about how low they get, hence the Haematologist referral. He explained that cancer patients don't reproduce "healthy" neutrophils and so they are quite vulnerable to infections. On the other hand, an otherwise healthy patient continues to produce effective neutrophils, albeit, less of them. Mine usually improve after around 3 weeks but they'repretty low at the moment. If you have a fbc among your regular bloods, you would know by now. I'd try the pain killer, it might not even affect yours.

[PMRpro Ambassador in reply to LemonZest11]

Oh I do - I just can't be bothered to look before seeing Christian, means going online and its a pain. He tells me if it is of any interest. My cholesterol is now 120 instead of over 200 ...

Despite my usual non-reaction to paracetamol it is actually better than the Novalgin stuff, I stocked up on very cheap paracetamol in the UK but this week Christian gave me 2 steroid injections for bursitis - and I have had 2 days almost entirely pain-free. Don't pay for them - painkillers I do, not covered by state insurance, and you can only buy the posh versions from the pharmacy. Unlike the UK where every supermarket has megacheap stuff! 16x500mg tablets in Tesco or Lidle is about 50 cents, more like 6 euros here.

[LemonZest11 in reply to PMRpro]

Haha, paracetamol is cheap here too, would you like me to send you some?

[PMRpro Ambassador in reply to LemonZest11]

No ta - I have enough until the next trip to the UK and if the steroid injections I had on Wednesday work as long as the last one - I'm pain-free at present WITHOUT paracetamol!!

[LemonZest11 in reply to PMRpro]

💪 🥳

[Paulagcl]

I am on Kevara and until recently also prednisone. I went about my life normally, just wore a mask when in an airport or a crowded situation, though not always. I did catch Covid a couple of months ago and was given the anti-viral, which worked. But there was alot of it around then (seems to have calmed down now that weather is getting cooler -- I live in Los Angeles).

[S4ndy]

I have been going to the theatre. I arrived early and taken my seat and then don't mingle. I stay in the theatre for the interval and wait until the crowd rushes out before leaving. This way I avoid being around the general crowd. I also book a step free access seat as these are slightly offset from the main area but still with a good view. Also, should I need the loo there's direct access to a disabled loo without going through the main entrance. I am also vigilant about washing my hands and using hand sanitiser. So far so good!

I did contract COVID visiting a supermarket last Christmas and once at the swimming pool. Both times it took 2 weeks to clear up. However, I had an infection which was not COVID but had me coughing for 2 months which I think I picked up at a coffee morning! I think that it's almost impossible to avoid all infections and still lead an enjoyable life!

[LemonZest11 in reply to S4ndy]

True, we have to live our best lives, and sometimes that means we have a few hiccups.

[PMRpro Ambassador in reply to S4ndy]

Masks help with all infections - but not very practical for a coffee morning!

[Quintius]

I have been on pred and actemra for combined a little more than two years. Go wherever I like, public transportation, football matches etc. Have not experience a rise in illnesses and infections. Rather the contrary. Knock on wood.

[Balletomane]

You may, perhaps, already have suspected from my name that I am a keen theatre goer, particularly ballet. As soon as the vaccinations became available, I was back where I needed to be for my quality of life. I keep stocked up with a variety of FFP2 and FFP3 masks, different colours, which I try to match with what I'm wearing. I wear a mask while travelling, and in the auditorium/cinema etc, but not during intervals when I join friends for conversation/drinks.

Enjoy your outings

[Bummed24 in reply to Balletomane]

Thanks to all of you who have responded. I am taking your experiences to heart. Encouraging !

[KASHMIRI1]

I go out now and occasionally meet friends in a cafe but I wouldn't go to a crowded overheated event like a theatre or cinema etc. People just don't want to stay home and miss something they have booked and paid for. As for taking their kids out while they are ill don't get me started.

[TandemTime]

Having suffered from chest infections all my life I was very nervous about Covid. I have had it once may be twice, it was very unpleasant but got through it with a lot of rest etc.Now I always carry an F2 or 3 mask, just in case I end up sitting next to someone with a streaming cold on the train etc.

I also use it for the que at an airport as there are no open windows and you can be stuck in a tunnel for 10 /15 minutes with no ventilation. Ventilation is key for me..anyway who wants to go on holiday and then not be well. As already mentioned people travel with bugs or not. Planes have Hepa filters but if you sit next to someone who is coughing it's a big ask for them to work that hard.

If I am at a friends house for a meal and then find another guest has a cold, I ask if I can crank a window open just a bit. With Covid I believe we learnt, it's the loading of the amount of virus you recieve, less loading less of an issue.

[PMRpro Ambassador in reply to TandemTime]

Requesting airport assistance helps - no standing in queues, the staff get to go to the front! Though security at Manchester was horrendous ...