Experience of Covid with no antibodies!

[Main1234]

I thought it might be helpful/ reassuring for some to write about our experience with Covid.

Last week we had visitors, they were fully vaccinated and has done a LF before their visit. We saw them outside in our garden. The next day they informed us they had Covid confirmed by positive LF. So we waited !!

3 days later my OH tested positive on his LF and sent his priority PCR off ( results received by that night) a friend said it was best to contact GP (she is a nurse as well ) for referral for antivirals which I did after taking a copy of the e-mail received. My OH was quite poorly on day 1 not being able to stand, high temperature and certainly not eating or drinking much. Very slight improvement on day 2 and 3 . We still had not heard from 111 or 119 and the GP sent another referral ( think on reflection they had “lost “ it ) Day 4 he was rung by the hospital and booked for infusion next day ( day 5) The infusion went well and today (day 6) he is certainly making progress.

I also caught Covid but thankfully have not been ill.

He has had all 4 jabs and is on RTX, MMF and 3 mgs prednisone but has no antibodies at all. We had been so very careful for 2 years- I even left work to protect him. Think it shows how contagious this strain is. The people who visited us were well on the day and had done all we asked to protect us.

I just wanted to let people know that the antivirals were a life changer for us and we are very grateful we were able to receive them in a timely fashion.

Take care and stay safe.

[Nadine99]

Thank you for that insight. It's amazing that no matter how careful we are, we can still catch it. Let's hope that it's now possible to get on top of it when it catches up with us. My husband was hospitalised with it in Nov and we thought he might not make it out, so we're still being careful but ready to spring into action if he catches it again. Glad to hear it's all working out for you, best wishes

[PMRpro]

Really interesting.

Ironically, after 2 years of escaping it, my son in law caught it last weekend - my daughter was CEV for the first lockdowns as she is front line NHS in the ED so they have been careful until very recently although she has been back at work for a long time. He went to a stag do - and tested positive 3/4 days later and she tested every day, positive this morning. We always expected her to get it and she has had several positive patients that she has spent a lot of time with during the diagnosis process. But that it was OH is really ironic!!!

[Main1234 in reply to PMRpro]

Hope they make an uneventful recovery. Everyone we know seems to have had it or just recovering.

I was also fully vaccinated , feel a bit invincible now !!

[PMRpro in reply to Main1234]

I've had 3 jabs - the entitlement is toally different here in Italy, 4th jabs so far only for the very elderly. But masks remain mandatory in many places even now other measures have been relaxed - don't see me giving up my mask inside any time soon. I find the FFP2 masks we must use quite comfortable in fact.

[Boss302Fan in reply to PMRpro]

Some of us are not in the UK. I know PCR stands for the polymerase chain reaction test, but what heck is LF? What is MMT, CEV, NHS , and ED ( if not Emergency Department, we use the term Emergency Room). If LF is some shorthand for the so-called fast test I wonder if people understand it’s prone to false negatives due to it being less sensitive, might pick up an asymptomatic infection, but more effective for those who are displaying signs of some kind of infection and want to discern if Covid-19 or not. No false positives with this test. The PCR based test is just the opposite. Extremely unlikely to have a false negative, but prone to false positives because it is so sensitive it can discern fragments of Sars-cov-2 that are not viable.

Anyway, glad to hear the antivirals work as indicated.

[PMRpro in reply to Boss302Fan]

LF - lateral flow tests.RTX - rituximab

MMT - I suspect mofetil mycophenolate but I may be wrong

CEV - clinically extremely vulnerable

NHS - National Health Service

ED Emergency Department, also known as A&E, Accident and Emergency

These forums are based in the UK - I don't get shirty when you use US terms here.

[Boss302Fan in reply to PMRpro]

Sorry, didn’t mean to offend, I honestly didn’t know what the terms meant and had gone back and deleted RTX when it was described elsewhere, but before you read the post. Also, I don’t believe I’ve used shorthand without spelling it out first, unless preceding posts mention it or the term (eg Pred, MTX, ..) is regularly used.

[PMRpro in reply to Boss302Fan]

I added the RTX from the original post. The terms will have been used on other threads over time. I suppose you get particularly used to the contractions used in your own field. As I say, not entirely sure about MMT - it is usually MMF that is used - but I know that Main's husband was on MMF some time ago,

PS - not offended, just saying! Thought you knew me by now

[Main1234 in reply to PMRpro]

Apologies I did mean MMF ( have just edited post to save any further confusion) I always think it’s a UK site but guess should not have used abbreviations.

[PMRpro in reply to Main1234]

No problems - it is so easy to mistype - I do it all the time and my typing is usually good!

[gilders]

Thanks for reporting. It is reassuring to hear that the antivirals seem effective for people severely immune-suppressed.

[Main1234 in reply to gilders]

I wanted to let people hear a more positive story.

[Galaxy2]

Thank you for posting, I do hope your OH continues to improve. It does seem to be everywhere at the moment but knowing these antiviral treatments are available is so reassuring

[Main1234 in reply to Galaxy2]

He has improved quite quickly since the infusion and hopefully will continue over the next week or 2 . It’s certainly given us hope that we can get though this pandemic .

[SheffieldJane]

Thank you! It is helpful and reassuring to read about your experience.

[Mooka]

Thank you for sharing. I hope your OH makes a quick and full recovery. 💐

[HappyLung]

Hi Main1234. I maybe in a similar path in the vasculitis journey as your husband, although thankfully not had Corona virus. I've had 3 doses of vaccination,the last one one in December the 21st., am currently on 5mg of Prednisolone and had my 3rd Rituximab infusion on the 3rd of March 2022. The one question I often ask my consultant is how vulnerable am I to catching infection, disease, etc. and I never get a straight answer. As matter of interest, when did your husband have his last RTX infusion? I might help me to ascertain my own level of immunity. Thank you and best wishes.

[Main1234 in reply to HappyLung]

He had his last RTX infusion in November last year, he has been having it for the last 18 months and technically is on a 2 year program with one more RTX to go. We had been so very, very cautious over last 2 years . All shopping on line etc and as both retired not going into work. FFP2 masks worn for hospital appointments etc.

this virus appears to be very contagious but maybe not as deadly for all.

Take care of yourself as numbers are very high at the moment.

Please feel free to ask any questions .

[Dancerina]

My son and I have both recently received Evusheld from UCLA Medical Center. He has vasculitis/ GPA and we both have Common Variable Immunodeficiency (and do IgG replacement at home.). Rituximab killed his B cells. Yesterday we attended a big church event (indoor) for the first time since last summer before Delta & Omicron surges. My family was the only one wearing masks. I feel like one of those WW2 Japanese soldiers who hid in the jungle to avoid the end of the war… emerging to a different world. Son has three surgeries since August 2021, so we have been shielding very carefully as we didn’t want any COVID complications to delay his March surgery. It’s hard to know what’s safe to do, but the Evusheld will help. Glad the anti vitals are working.