I thought I’d been so careful, shielding, not allowing friends and family to visit. Have food delivery & detol spraying everything delivered. I had a few Amazon deliveries, again told the delivery man to leave parcels in the summer house & sprayed Detol on the contents, then washed my hands and threw away the disposable gloves. So when I started having a dry cough day and night I assumed it was a cold or flu, but then came the horrendous chest pains, it’s like breathing & coughing with broken ribs. Then the fatigue kicked in, I thought I knew fatigue, but this was in another league, I found it hard to walk from the bedroom to the bathroom. I normally run 5k at the gym. By day five and and a temperature of 40.2c and probably higher during the night. My wife contacted 111 as she said I was delirious during saying all sorts of weird religious stuff and shaking so violently it looked like a scene from The Exorcist. The team at NHS 111 said it looked like typical Covid 19 and said they would send an an ambulance, which arrived surprisingly quick, the ambulance crew threw open the windows pulled back the duvet, they said my temperature was over 40c. They wanted to take me in, but I was breathing ok, very painful but breathing ok, sats were ok, so I didn’t want to occupy a hospital bed. They said ok, but if your breathing gets worse call back, this time no choice you come in do I said ok. I was supposed to take my Pegasys 3 days ago, I normally feel a bit tired fatigued the next day. As I am already feeling absolutely dreadful, I’m worried as I really can’t cope with anything additional. But I have been told Pegasys may actually help with Covid 19 as the active substance in Pegasys, peginterferon Interferons are natural substances produced by the body that help it fight infections caused by viruses. The exact way alfa interferons work in viral diseases in not fully understood, but it is thought that they act as immunomodulators (substances that modify how the immune system, the body’s defence system, works). Alfa interferons may also block the multiplication of viruses. So it sounds like it may help me to take it but I feel so rubbish, I’m apprehensive. What do you think? Raff
I have Covid 19 - I’ m worried about taking my P... - MPN Voice
I have Covid 19 - I’ m worried about taking my Peg medication.
So, you've not actually been tested for COVID19 I assume? I would contact my consultant heamatologist and ask for guidance but in the meantime the advice is to carry on taking your medication until told otherwise. I do worry about your wife because if you went to hospital you would have been tested and had a definitive answer. Is their anyone else in you household? I hope your soon on your feet. Sending you warm wishes and get well soon.tina.x🤗
Yes I did think it would be nice to know 100%, I did discuss it with my haematologist, she said Covid 19 had quite a unique set of symptoms, and as far as she is concerned I have. This was also echoed by the 5 people I ended up chatting to on NHS 111 & the Ambulance crew. They kept ringing every back. I’m hoping to get a test kit from Amazon or Boots. My sisters daughter is a critical care nurse and she said day 12 has been the day that most have been feeling better. I’m on day 9.
Good luck Raphael. Tina.🤗
It is highly likely that my sister and husband have had the virus too, but it cannot be confirmed through lack of testing.
My sisters husband is a community matron in London, so his job makes him particularly vulnerable. He believes strongly that they have had Coronavirus-19. The one symptom that sticks out for them was the very high temperature they endured.
They are both making a strong recovery.
Yes it took a lot of paracetamol and open windows to get below 40c. My worst issue is taste buds have gone and when I breathe it feels like I Have broken ribs
I hope both are fine now Mary, this is the problem mary the lack of testing. Hope you keeping safe. Any luck on the delivery front? Warm wishes. tina.🤗
Yes Tina, lack of testing is a huge issue, especially for front line NHS.
No luck with online shopping, so had to brave the supermarket, but it wasn’t too bad, social distancing was clearly evident, wore surgical gloves and cleaned packaging, washed hands etc etc. Got a home delivery next week too from my daughter, so can relax a bit now.
Hope you’re ok shielding too. I think we’re all getting more comfort from this forum than ever now.
Take Care
Mary xx
HI Raff, sounds awful, I hope you are feeling a bit better now, but you really do need to contact your haematologist for advice on this. Best wishes, Maz
Thank you Maz, I will talk with my Haematologist, Dr Harrison, he’s always helpful. (No relation to Claire)
Really sorry to hear this.
You need to speak with your haematologist as a matter of urgency. I understand your thinking with regards to Pegasys and how it may help your situation, but only an expert can advise you. Please push to get hold of your team. You need their support now more than ever.
Wishing you all the best
Mary xx
To be honest I thought the NHS completely overwhelmed, so I was just going to just keep safe at home, but I have been getting help and advice.
To be honest raff I will probably stay at home if I was unfortunate to go down ill with it.I don't want the choice taken out of my hands. All getting a bit scary with figures climbing every day. Tina.🤗
The paramedics were very helpful they said their choice would be to go in to hospital but it’s at the point where you can decide if you decide not to go to hospital you can always ring back and change your mind. It’s very uncomfortable but I can breath so I don’t want to use a bed that someone may need aspirating.
Oh no Raff, so sorry to read this... I hope the symptoms start subsiding soon and you start feeling better, without the need to go to hospital 🙏🏻🙏🏻🙏🏻 Also hoping your wife does not get it. You might have been exposed to the virus before you started shielding given the incubation period - seems very unlikely you would get it from a delivery, particularly given how careful you’ve been desinfecting. Re: Pegasys, I would phone the haematology clinic at the hospital and seek advice. I would have thought it is fine to take it for the reasons you mention but best to get a professional opinion. Healing thoughts and lots of love xxx
Thanks Susana, I will do that, I have been told to take it as normal, I suppose I’m just a bit worried about feeling any worse. So far my wife seems ok, I have tried to use different bathrooms/bedrooms. Hopefully she will be ok. Hope you are safe and well. X
Hi Raph ,
This sounds horrendous, I hope you are well on the way to recovery now. I think I would rather stay at home too if at all possible.
I can’t help with the Peg , but agree with others you should definitely get hold of your haematologist.
Keep a close eye on your wife as well.
Best wishes to you both
Judy x
Thanks Judy, at the moment just saying in bed. I was told day 12 I should start to feel better, not long to go I’m on day 9.
Wishing you all the best
Wishing you all the best
Hi Raff,
I echo what has been said, I’m so sorry to hear you have been affected..
I’m assuming you are of strong constitution, you run daily and clearly have done a great job at Self Caring at home...
As a Nurse, all temperatures of this level, need cooling down, absolutely essential..
Windows Open , or a Fan, Duvet pulled back and Tepid Water Sponging is good..
Always bring the Temp down, sounds as though you have done an Excellent job ..
Increase your Fluid Intake preferably Water, to compensate for Fluid Evaporation with High Temps..
Good Luck it sounds like the worst is over and thank you for sharing this experience with us..
Your precautions in place are efficient and good example of what we all need to do..
You were simply unlucky, keep an eye on your wife, just in case.. 🤞
As Maz said you need to speak to your Haematologist ASAP. with regards to Peg...
Keep improving, slow but sure, out of interest Raff, what age are you ?
My apologies in advance for asking.
All the Best to You & Yours
Maria 😊
Hi Raph ,
So sorry to hear this .
Glad you are starting to feel better. Sounds like you have had good advice and support which is great.
I would just like to share that I received a letter yesterday from hospital consultant team- on high risk advised to shield , am 57, ( PVFor 6 yrs),
No other underlying condition, been on peg int over a year . Doing fine , feeling well.
In the letter i was informed Pegasys is immune suppression and can worsen symptoms of Coronavirus. If I develop symptoms to temporarily withhold the pegasys in this situation and contact oncology service for advice.
I am aware we are all different but thought I would share this information.
Wishing you well and best wishes to you and your wife.
Hello Raph
So sorry for what you are having to go through - scary stuff - I hope you can continue to stay home while you recover and you start to improve soon. Glad to hear you have contact with your haem team - hopefully they will give you advice about whether or not to pause with the meds. Wishing you well. Anne-Marie x
So sorry to hear you have been floored by the Virus and hope you are now on the way to recovery. . Best wishes for a quick recovery now and hope your wife keeps safe. Fran
Just wanted to say I hope you get better soon.
So sorry to learn this news. The good news is that the majority of people survive. I’m sure you will be one of them. I read that you should be drinking lots of warm fluids to break up the phlegm. You don’t want it to go to your lungs. Please take care of yourself and feel better soon.
Greetings from Fleetwood England.
You are having it rough, continuation of your medication is one which should be discussed with your team. I wish you well.
So sorry to hear this, especially when you have been so careful, this is extremely worrying. I did read that the Interferon on trial had been tweaked so it's not the Interferon in the state that we take it, which can make the virus worse. Although I don't think you can trust most things you read these days. Please seek advice from your consultant and I hope you feel better soon. Take care.
Jane
Best wishes for a speedy recovery Raff...
I have heard something similar about Interferons, and that they were being trialled as a COVID-19 Vaccine too... A re-purposing as it were etc... (?)
In any event, I would be consulting your MPN medical team for any and all advice, if I were you... Not taking your medication would most likely have many unwanted side-effects too...
Very best wishes on clobbering the COVID! 
Stay strong, & healthy buddy...
Steve
Absolutely horrendous! I am so glad you are getting through it.
It is alarming that you have had it with being so careful. I do hope that your wife escapes it and indeed it would be of great interest to hear if she does, or does not get it because I would like to know if it is guaranteed that the other person in the house will get it or not. 💐
Best wishes for a speedy recovery!
Hi wishing you better best wishes Poppy
Hi Raph. It just shows this virus knows no boundaries. I wish you a speedy recovery. Thankyou for posting as it gives us all hope that we can get through it. Jx
Hi Raphel hope your feeling better soonx
Hi Sorry to hear you have had such a rough time, hope you feel better very soon. Best wishes Karen x
Wishing you well Raff, let’s hope when you get to day twelve you start to feel better.
I had my bloods done just over a week ago, then had a phone call more or less as I got home, my Haematologist called to say that my white platelets had Spiked which was an indication of an infection and how was I feeling, I explained to him that the previous four weeks I had the most horrendous cold, did not think it was flu as had the jab back in September, which would of helped if it was flu, but had felt really unwell with a sore throat, cough, headache, temperature, and ached all over, lost my appetite, very sore eyes, and generally felt really unwell, blamed it on my husband as he had been in the city socialising a couple of time since December and he picked up what we thought was a cold, he also was really unwell, and he never gets ill. After explaining this to my Haematologist he felt that I might of been experiencing a mild form of Covid 19 if that was mild then I know how you must be feeling. But I unfortunately I will never know for sure unless I was tested.
I now have an appointment to go back to get more bloods done in June, just hoping that the infection has gone, but It was suggested that I must self isolate for three months, well as I had been so unwell I had already stayed indoors for nearly three weeks, and left the shopping to the old man, but make him put his cloths straight in the wash, and then shower.
I am normally quite a positive person, but this has knocked me for six and a little frightened, plus I did not receive a letter regarding being an extremely vulnerable person.
Let’s hope you start to feel better soon, and that Day twelve you start to turn the corner with this nasty virus, and that this storm will pass.
Jean
Sorry you have contracted this disease. Sounds like you did everything properly and still got infected. Also sounds like you are now on the road to recovery after going thru hell. Stay strong, keep nourished and well hydrated. Did they offer you Plaquenil as a treatment?
Thank you for publishing your course of this disease it may help others when they contract the virus. I am sure many of us will become infected. Please continue to keep us advised of how you are doing and any treatments you are advised to take. Best of luck to you.
Hi Raff. So sorry to hear this. I hope you are feeling very much better and making a speedy recovery
Sandy x
Hello Raph, been hoping that you have been able to shake this and that you were able to stay at home to recover - wishing you all the best. Anne-Marie.
Hi Raphael, sorry to hear how unwell you are, hopefully you are steadily recovering and we will hear from you soon. Turfbeg
Hey there Raf, I just read your post & see you never replied after that 9th day. Please write & let us know you’re ok. Thanks, Katie
Hi Katie, I was hospitalised for 9 days, had all sorts of post Covid complications. Water around the heart and lungs, had 5 drips in my arm to stop it all becoming pneumonia which would have been extremely serious as I wasn’t too well. After 6 weeks I’m feeling human again and eating again, lost 2 stone, probably a good thing for me as I’m a bit of a chunky chap, still have follow up appointments as my heart rhythms are still a bit wonky and my resting heart rate has doubled was 60 before I got Covid but all in all I feel pretty good. How are you doing? Raff
Hello Raph - so glad to hear you are finally on the mend and now back at home - all good wishes for your continued recovery. Anne-Marie. x
Ahh thank you Ann-Marie, hope you are well and staying safe.
Hi Raph. I’m so pleased that you’re on the mend. Wishing you a speedy recovery back to full health. Mel x
Ahh thank you Mel. Hope you are safe and well x
Thank you for reassuring us that you survived Covid, I was afraid you hadn’t. But boy you’ve had a tough time of it. I hope all these problems disappear & you return to the level of health you had. You’re clearly a real warrior. My best to you. Katie
I’m pleased you didn’t leave this site. Stay safe
Hi Raphael,
Really good to know you are on the mend, so very pleased for you and your loved ones...
I can see you have been through the wringer, always so good to hear of a success story combined with the care you received.
Yes we are disadvantaged from the onset with our MPN status.
Between your body fighting back and our NHS staff fighting for you, the Battle was Won !
Take Care of Yourself during this ongoing recovery stage..
All the Best & Stay Safe.
Maria 😊
Glad to hear your on the mend Raph. Take care and hope your back to full health very soon.
Mandy
Ahh thank you Mandy
Questions about AEs on Interferons w.r.t. liver enzymes
On bone marrow biopsy (BMB)?
immune system
