Covid Again - Watch this Space - Summary

[Investigator1]

Well here we are 27 days since my original post, having 2 x Negative tests in a row. Here are the summary points of what I have learnt.

1/ You can get through if immune suppressed it but it’s a long journey. And a lot will depend on your Viral Load. I personally don’t think mine was very high because my wife didn’t catch it but it was still bad enough. I never thought I was going into hospital but it kept coming and going so you never know. The last 2 weeks it’s been more like a head cold but before that blimey I felt rough.

2/ If your offered Anti Vitals take them! The system in the NHS does work where I live but there a general reluctance to prescribe them. GPs can’t prescribe them (so my GP says) so are a total waste of time if you need them. NHS 111 will just say go to A&E. They will only act at A&E if yyou’reon Deaths Door.

3/ Get plenty of Tests and if you suspect you have it then test, and if positive get hold of NHS straight away, unlike me who waited too long giving the NHS a good excuse not to give Antivirals to me.

4/ I have had Anti Virals so trust me the effect they have isn’t nice but over with in 5 days what’s worse is having Covid dragged out for 5 weeks not knowing what the next day or week would bring, the only advantage as I see it is that you can build up your own antibodies.

So there’s my summary. I’m still here, I have navigated myself through it on my own and there are my thoughts. I’ll leave it to you to make your own decisions. Nick.

[Varp]

Good to hear you are finally feeling brighter

[Dazler99]

Nick,

Glad to hear you are on the mend. Reading your update I wonder if I’ve had covid as my symptoms are similar. I felt rough about a month ago and for the past few weeks have had a really heavy head cold - completely blocked and producing thick green mucus from my nose and coughing up the same, particularly in the mornings. I tested for covid but was negative but I understand the new covid strain does not always show positive. I visited the hospital walk in centre who said my chest was clear and it was an upper respiratory issue and prescribed Amoxicillin which made no difference. I hope that this just clears itself up.

Regards

Darin

[Investigator1 in reply to Dazler99]

Hi Dazler99, it sounds the same as me and I had a couple of what looked like negative tests. I’ll tell you something though I went out on my push bike yesterday and had difficulty getting my breath so I am back taking the Brown inhaler twice a day until it settles down.

[Dazler99]

Hi Nick,

Based on what you said I tested again today and positive!!! Contacted 111 and, due to the GPA, they are hopefully prescribing anti-viral drugs for me.

I played golf yesterday and walked off after seven holes as I was struggling.

We’ve got to keep ☺️ smiling.

Regards

Darin

[Investigator1 in reply to Dazler99]

Wow Darin mate! Yes keep smiling, I had to get up at about 2am I started with a coughing fit and just couldn’t get my breath. Had a blast on y grey inhaler and ok now. My specialist said to me after my last bout of Covid in October last year that the Virus can promote an influx of white “B” cells even if undergoing treatment, although short lived they can temporarily raise ANCA levels so it’s something to think about. Tell you what my friend if 111 get you the antivirals let me know, it’s vitally important.

Have you thought it could be “Covid Rebound” that’s what I was told by the NHS, where you don’t feel too bad get a negative test and then it hits you, apparently it’s quite common in GPA patients. Take care, please let me know the state of play

Nick

[Dazler99 in reply to Investigator1]

Nick,

I was prescribed Molnupiravir anti-viral through the 111 service and the drugs will be delivered to me today. I was advised that Molnupiravir was not the most effective anti-viral but is the safest for me as other anti-virals interact with my Avacopan drugs.

Based on my symptoms, the Doctor believes that I have probably got Covid on top of another infection and wants me to attend hospital on Monday to provide a mucus sample for analysis.

Interesting what you say about “B” cells as I have Rituximab infusions every 6 months that target and kill off protein linked to GPA that attach to “B” cells. I am due my next infusion in September but I guess I will need to wait until I’ve got the Covid and any infections out of the system.

We both carry on fighting and we will win!!!

Regards

Darin

[Investigator1 in reply to Dazler99]

Really pleased for you Darin, that’s a route I will try if there is a next time, I am assuming you spoke to an Operator who referred you to a Doctor who got in touch. I am still perplexed that GPs can’t (or so they say) prescribe anti virals. Hope they do the trick. Let us know how you get on. Nick.

[Mooka]

Good to know you’ve come through this now. I hope you recover soon but remember to pace yourself!

[Investigator1 in reply to Mooka]

Really good point that Mooka, im a bit of a silly beggar when it comes to that. Straight back out at it, I will take your advice and just take things steady, I am really bushed I have to admit, we all think negative back to normal and it doesent work like that.

[Mooka in reply to Investigator1]

We’re all as bad doing too much, but you pay the price for not doing so. Take care.

[Main1234]

hi Nick

You have certainly been on a journey !

Thank you for your update and hope you continue to improve. Definitely antivirals all the way. On a side line I wonder if anyone has had any delivered and not used , maybe “put away” until next Covid infection ??

[Investigator1 in reply to Main1234]

Y’know I remember us having this conversation last October when I got it. It would be so tempting to get through it and keep them. What I have learnt through this is on balance to just take them, last time I felt fine and it was tempting but if I knew what I know now after the past 5 weeks is it’s not worth it. I also think my recovery is going to be more protracted and bumpy, I think if you have a “journey” you just have to learn from it, at least you get something from it. Nick.

[Main1234]

well said as usual Nick

[BlueTheCat]

This is the first time I have knowingly had Covid. I tested positive for it last Thursday.

It does not seem to have been a particularly severe infection for me. Headache (brought under control with paracetamol), sore throat and cough.

I did contact 111 to look to see if I could get antivirals. I went through the first triage, and the lady said she would need to hand me off to a clinical team who would ring me back. They duly did ring back, but towards the end of the questioning she seemed confused that I was not diabetic, and asked why I was looking to get them. So I explained about Vasculitis GPA and Rituximab and being immune supressed at which point she said she needed to hand me off to another team who would get back to me later on that Thursday. This team did not call me back.

I'll confess I did not pursue it after this as my symptoms did not seem to be getting worse and on the Friday morning I actually felt OK, though had a bit of a cough and crusty/snotty nose.

I am still testing positive as of Monday morning.

[Investigator1 in reply to BlueTheCat]

That was the same for me symptoms wise, but still pursue those antivirals because I have been in that situation and felt ok but as time goes on you just start feeling worse, and I still feel pretty crappy even after 5 weeks, they may come back now and say it’s over 5 days so you can’t have them but push them and don’t go through the ordeal that I have experienced. Nick.

[OldTed60]

Yes it’s good to gather that you’re getting there at last. We had it around same time I think but I was testing negative after ten days but still totally wiped out and felt dizzy, faint with the runs (and a new stoma) right up until late last week - a month after it started. At my rheumatology appointment 3 weeks after testing positive first day - they took bloods for starting Rituximab and my CRP was +120 where it’s normally under 10 these days. Platelets were high too where usually normal to low. It also knocked my albumin well below range but this and low sodium are my normal these days due to malabsorption from scleroderma gut. Anyway I’m getting my first Rituximab infusion two weeks today so hopefully will stay out of trouble until then!