I really needed somewhere just to have a little (or big) panic but thanks to Twitter I've just read that the hospital I'm due to have my second Rituximab infusion at tomorrow is treating patients with the Coronavirus in their infectious diseases unit. I was worried about the infusion anyway but my anxiety is climbing towards the roof. All the info on their website says they're still advising patients to attend outpatient appointments but I'm still freaked out. What would you do in my place?
Thanks in advance for any replies xx
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BookishVibes
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If it’s imperative that you have it now, then I’d have it and watch them closely, for cross contamination, etc. If it can wait I’d have it done through home-care. That’s how I have my IVIG now. Hope it goes well.
If a patient is in an infectious diseases unit then ABSOLUTE precautions on that unit will be taken.
You are probably more safe in that hospital, despite a patient with Covid-19 being there, than you are from the general public outside.
It's up to you but if your treatment helps then I wouldn't delay it. Keep washing your hands. Avoid touching your face.
There is alot of panic going on and while this situation needs to be taken very seriously I believe that people are beginning to go into panic mode. For example, by wearing over the counter facemasks etc. They are only effective if you are showing symptoms and are trying to avoid contamination of others. They are not a protective measure and only encourage face touching.
If it were me, I would still go to your infusion. You need to keep your lupus under control while covid-19 is about so you don't get sick in any other way. My friend is still having her chemo treatments, just take all the correct measures to keep your hands clean. I would consider wearing gloves if going by public transport and taking a little bag to put them in your handbag.
I agree: i’m still due @my Univ Hospital Infusion Clinic for immunology’s ongoing 3-weekly IVIG infusions which involve 4 hours with all sorts of other patients at v high risk of any type of infection...infectious diseases are an immunology speciality: my feeling is that we high risk patients can rely on immunologists at a time like this..i certainly am: indeed, am off to Addenbrookes for IVIG next week because my type of ‘boy in the bubble’ Primary Immunodeficiency Disease needs Immunoglobulin G Replacement Therapy...That’s That!🍀❤️🍀 ❤️ Coco
I'm still under investigation by joint immunology and ID. But one day I do wonder if we'll be sitting next to each other having a chat during IVIG infusions.
Good luck Coco. Our stories have so many similarities and your positive attitude keeps me going. Thank goodness for our consultants!
Infectious disease units are sealed. By their very name they have to be.
It would not impact you. Stick to your treatment as a delay could lead to further complications. We risk catching some much each day, this is just another thing.
Hi, I wouldn’t worry at all about the fact they’re treating coronavirus patients on the ID ward. They are specialists with this and will be kept isolated and very safe procedures. We are far more likely to pick it up on public transport etc.
I was hospitalised at the start of U.K. coronavirus cases and in the same ward with the coronavirus cases, as the infection ward is shared with rheumatology (for some very strange reason!). I know the staff well after many stays on that ward and they are so careful. It’s now been closed to all patients except those with coronavirus and they won’t be allowed into the rest of the hospital (it’s a locked ward anyway). I’m presuming you’re the same hospital as me or a similar one with good procedures.
A bigger concern is that the rituximab will reduce your immunity a bit, but not as much as some of the other immunosuppressants because it only removes a small part of the immune system.
It’s always a difficult balance for us but it depends on what you’re having the rituximab for. If it’s organs or low blood counts, then your rheumy will probably say it’s important to have but maybe can wait if it’s skin, joints etc.
If it was me I’d go and presume your rheumy/ a rheumy registrar comes first to check bloods/ check you’re ok for the infusion? You can then go over it all with them and decide?
My rheumy is quite insistent I attend rheumy appointments every couple of weeks (and he is very cautious) so he must think it’s ok at the moment to go to the hospital.
As number of cases here rises then going to the hospitals for our treatments/ clinics may become more difficult just because of mixing with lots of people.
Hope you get to speak one of the rheumy’s about it as they’ll know your case but it’s your decision too
Delaying treatments like rituximab can cause flares so be very cautious going down that route. Delaying for the sake of the virus also is unlikely to be helpful unless you delay for a long time as the number of people infected will continue to increase for some time therefore increasing your risk of infection. Use hand sanitiser/hand washing & not touching your face is the best way to reduce risk
The patients in the infectious diseases unit are being barrier nursed - they are the least of your problem. It is the person you meet anywhere else to worry about. It is now being said by some experts that something like 50-80% of people have so few symptoms it isn't even noticed - they are the ones spreading it without knowing. That is why social distancing and hand washing, handwashing, hand washing, is so important.
This isn't a "week or two" delay - this is going to take months to calm down and will get a lot worse before it gets better. Look at us in Italy. Go - because it might be a very long time before it is any better.
I’m in exactly the same position going on Thursday for the second of my infusions at a hospital also treating Covid-19 but I have no intention of delaying my treatment, but I understand you are nervous
We’re at no greater risk of contracting this virus than anyone else and as someone said a hospital is probably one of the safest places
There is a lot of panic at the moment over the virus as long as everyone is sensible then I cannot see a risk for either of us if you need treatment you need treatment if there was any risk the hospital would cancel appointments- I should probably say I’m not a health professional just a regular lupus sufferer with all the worries and concerns as everyone else but because of my job am up to speed with all the latest info and I think we need to trust the professionals and also the stress of worrying isn’t good for us
It’s your call at the end of the day all we can do is support 👍🏼
To put things in perspective, sepsis kills 46,000 people a year in the UK. Many reasonably healthy people go into hospital for straightforward treatment and die of sepsis.
In 2017, 5,000 elderly people died as a result of falling down stairs.
My Dad is currently in the Acute Coronary Care in Wrexham. The treatment is excellent and the preparation for the virus is everywhere. One thing that I have noticed in A&E is the walk ins for minor ailments, earaches, sore throats is minimal; they are obviously concerned that they may catch something!! Best wishes Kevin
Thank you to everyone for taking the time to reply. I really appreciate it. After much tossing and turning I decided to go ahead with my infusion. I did consider asking to delay it but the problem with that is we don't know when the Coronavirus is going to start dying out so who knows how long I would have to delay it for? Also, as others have pointed out, I need to keep my autoimmune diseases under control, if they're poorly controlled that in itself makes me more vulnerable. So I'm actually at the hospital right now having the infusion, along with 4 other patients. I pray I have made the right decision. Thanks so much again for taking the trouble to respond to me. xx
I should also add, my dad used to work at the hospital I have my treatment at (in an admin capacity) and pointed out the infectious diseases unit is nearly the opposite side of the building from the rheumatology unit, so that helped me feel a little better too!
You did the right thing 100% (in my opinion). Delaying your lupus treatment could mean your immune system having its own party which would put you at greater risk of not being able to fight the virus if you were to catch it.
Patients with Lupus are deemed in the high risk category. Other than the usual government advice about handwashing etc, keeping chronic health conditions under control is vital.
Nice one for being brave. Keep calm and carry on x
Hi. You could always call the dept/unit you will be attending to check that you should still attend. However I can only imagine that the hospital will be taking the utmost precautions.
And, of course, if the virus is spreading within the community (as I believe is starting to occur, with experts saying that some people experience/will experience only mild cases and therefore not be aware that it is Covid-19), just getting out and about probably now carries a risk in itself. I think the thing is not to worry too much and to try to take sensible precautions.
I have a number of hospital appointments this month - not at your hospital I would imagine but possibly at one where an infected patient or two is being treated - and my plan of action is to use the hand sanitiser on going in, to have tied my hair back and not touch my face, to sit or stand at least 6 feet away from other people whilst waiting for my appointment, to wash my hands rigorously before leaving the building, use hand sanitiser again on getting into the car, then to wash my hands as the first thing I do on entering the house. I will also be putting my trousers and fleece on to wash at 60 degrees, then be washing my hands again! A rigmarole but there we are.
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Lupus and Coronavirus (COVID-19) - UPDATED 25/03/2020
