Tested Positive - while on Rituximab - Serio... - Vasculitis UK

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Tested Positive - while on Rituximab - Seriously worried

Investigator1 profile image
18 Replies

Tested Positive - Got up yesterday felt a bit heady, ran my normal test and OMG - Positive. Rang my consultants admin they completed form and contacted yesterday by a snotty woman from NHS who didn’t have a clue about Vasculitis or GPA and the potential of getting seriously ill while on Rituximab. Finally she agreed to submit a prescription to the Hospital who are supposed to contact me today regarding anti viral treatment. Symptoms only slight at the mo pretty much the same as yesterday but waiting for the storm to come. Wife still negative. We were in a hotel for a few days, a horrible family were staying there, dirty kids in pyjamas at breakfast, coughing everywhere, I moved but it may have been too late. Just shows how easy it is to get it. Take care everybody.

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18 Replies
Main1234 profile image
Main1234

So sorry you now have tested positive. Hope they manage to sort out your antiviral infusion swiftly. Not what you need when feeling unwell, I did it for my OH as he was quite poorly at this stage. It seems so unfair when we have all been so careful and wish the government would sort out the Evosheld .

My OH also had Covid in March as I did. He continued to test positive for nearly 3 weeks which I understand is “normal “ for those are immune suppressed. His bloods at his routine blood tests were a bit off as well but the following month were fine.

He made good progress following infusion but took a few weeks to return to his “normal “

Wishing you well and a speedy uneventful recovery .

Investigator1 profile image
Investigator1 in reply to Main1234

Thanks Main1234, symptoms only slight at the moment but the hospital called this morning and I am booked in for 12 today.

Main1234 profile image
Main1234 in reply to Investigator1

Excellent news . It made such a difference when he had it. Hope your wife stays negative.

Investigator1 profile image
Investigator1 in reply to Main1234

Just had it, no after effects as yet, temp slightly up but levelled off and oxygen levels 97% we will wait and see.

Main1234 profile image
Main1234 in reply to Investigator1

So glad it’s done. The only side effect my OH had was because he was dehydrated it took 4 goes to get the cannula in!! His oxygen levels and blood pressure readings were better than usual !! Take care and rest up

Investigator1 profile image
Investigator1 in reply to Main1234

Hi again Main1234, I started feeling quite I’ll last night, got into bed and couldn’t settle by about midnight a thought “here we go” dizzy, sweating, fidgety, just feeling really bad. Managed to get off and at 2am woke and it was like somebody had turned the light on, felt so much better. It must have been the treatment kicking in. This morning it just feels like a have a cold. Nick

zoe69 profile image
zoe69AdministratorVolunteerVasculitis UK

I am sorry to hear that you got COVID, but glad you had your antivirals. This new variant seems to affect people more. Monitor yourself and if you oxygen levels drop or you feel very unwell seek medical help.Best wishes for a speedy recovery.

Investigator1 profile image
Investigator1

Apologies everybody it wasn’t technically Anti Virals they gave me it was Sotrovimab which is a monoclonal antibody, just checked my records but it looks like it has a high success rate of about 80% against hospitalisation or death.

May7 profile image
May7 in reply to Investigator1

Thank you so much for posting your experiences. They help justify my cautious behaviour during these more relaxed times. So glad you have turned a corner. Best wishes.

Investigator1 profile image
Investigator1 in reply to May7

Hope so May, to be honest taking it one day at a time. Something interesting they told me yesterday was that if and when I test negative if my wife is positive she could still reinfect me and they don’t know how effective the treatment would be. Secondly if she remains negative wait at least until she has at least 2 negative tests after my second negative.

May7 profile image
May7 in reply to Investigator1

Oh goodness, it could be like a never ending nightmare. Hope that doesn't happen. Just off to have my 5th jab now.

Mooka profile image
Mooka

So sorry to read you have Covid but pleased to hear you got some treatment quite promptly. I hope you have a good and speedy recovery and your wife continues to test negative. 🤗

M3LZY profile image
M3LZY

I'm so sorry your poorly on your holiday as well. Wishing you better very soon. 8 got vasculitis via covid. 1mth before I would have had vaccine. I haven't been good and haven't had the vaccine throufh fear of what spike in vaccine will fire off in me. I caught it March 21. Not antivax but scared to have it.

Investigator1 profile image
Investigator1 in reply to M3LZY

Hi M3LZY, I have had 5 jabs and my marker has still improved. It’s you choice of course but my advice would be have it!

Aviatrix profile image
Aviatrix

My anti-virals are all ready should I get Covid. At the first sign I just ring them and it's all good to go. I thought this was the norm for all immuno-suppressed patients?

Investigator1 profile image
Investigator1 in reply to Aviatrix

It should be but it isn’t, a lot of people who were told they would get treatments have had difficulty getting them and in some cases have been refused. It’s the same with anything being rolled out for the first time, different areas deal with it in different ways. When NHS England rang me they asked me about symptoms and I said they were slight the woman said “it looks like your managing your disease so maybe have the treatment in a few days” I said No! I need it now, and she got quite shirty and said “then say you would like it, don’t demand” I almost had to beg. So if you have all your ducks lines up then great but it’s not the same for everybody. Nick.

P123sue profile image
P123sue

Hi I tested positive 9 days ago admitted to Darlington hospital with breathing issues. Explained I neededanti virals on rituxamib as with you I idea, I was I four days they did t give them to me and Odis barged myself because the window to have them was closing , it was too late now , the gp is appalled and give me antibiotics

Investigator1 profile image
Investigator1 in reply to P123sue

Hi P123sue. So did you get them or not? Darlington, what a carry on I have had a few issues with them.

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