ET & Covid

[Alfiesarah]

Hi all..I was diagnosrd with ET and Jak2 positive and prescribed daily 500mg Hydroxycarbamide and 75mg aspirin..platelets 6 weeks ago at 565. I have just tested positive for Covid and.await a NHS call regarding antivirals. I just wondered if anyone here has had a similar experience and if antivirals should be taken? I currently have flu-like symptoms and needed to take sick leave from work but don't feel horrendous. I am weighing up benefits/risks of taking another unknown drug against riding the Covid storm for a few days without?

Thanks

[Ggrana3192]

my mpn specialist didn’t prescribe me antivirals when I had Covid in July .

[Alfiesarah in reply to Ggrana3192]

thank you for reply...what condition do you have?I received a letter from NHS in May stating as I had ET I was put on lis of high risk of serious illness if contracted Covid and therefore would be sent antivirals to protect against this. I have left message for my haem nurse to ring me back to confirm if at higher risk as I don't relish thought of taking even more meds if not necessary!

[HazeBlue in reply to Alfiesarah]

I opted for the infusion rather than the tablets . Was all fine I 30mins and I got better quite quickly .

[Alfiesarah in reply to HazeBlue]

Thank you..my haem nurse said didn't need them but do feel worse today..told just to keep eye on temp etc!

[HazeBlue in reply to Alfiesarah]

has to be given in first couple of days . Hope you recover well. I hesitant about the spikevax Moderna jab. Last five have been Pfizer . Reading about the new vaccine I’m not taking the risk. It’s not good for people with blood disorders .

[Alfiesarah in reply to HazeBlue]

Thank you..yes it does make you very guarded! As we don't need them for travel anymore, I doubt I will get vaccinated again! My blood disorder diagnosis followed 8 months after my very first vaccine jab in March 21..I had no health issues up to that point!

[azaelea in reply to HazeBlue]

I feel the same as you, Hazeblue. All previous Vac’s have been Pfizer and I am reluctant to have the spikevax Moderna as it seems to have bad side effects for some and uncertain how it affects our blood disorders. I believe Moderna is the only one being used this time in UK though USA have Pfizer.

[mhos61 in reply to azaelea]

Hi Fran, I have had the Pfizer bivalent this morning. Live in the UK.

[azaelea in reply to mhos61]

Oh that’s interesting. I’m in N.E Yorkshire /Tees area and heard that it’s Moderna here only. Could I ask what area you’re in? Thanks

[mhos61 in reply to azaelea]

I’m in Notts.

gov.uk/government/news/pfiz...

[azaelea in reply to mhos61]

thank you! I’ll have a look at the link you’ve sent.

[HazeBlue in reply to azaelea]

some people have had Pfizer . After seeking advice I will make appointment and see if they have Pfizer . Not having spikevax.

[azaelea in reply to HazeBlue]

yes, I think I will try and track Pfizer down if in my area at all. I managed to find it with the last one (5 th) eventually.

[HazeBlue in reply to azaelea]

wishing you all the best and stay healthy .

[azaelea in reply to HazeBlue]

Thanks. You too.

[hunter5582]

I had COVID in January. Having PV did not qualify me for monoclonal antibody treatment; however age>65 did qualify me. I opted for the treatment. The oral antivirals that are available now are more readily accessed than the monoclonal antibodies were. Whether to take them is not a black-and-white decision. It is really up to you to weigh the risks/benefits as it applies to your situation. It is your goals, risk tolerance, and preferences that should drive this decision. Given that this is not a black-and-white type decision, suggest you get some imput from your MPN Care team then make your own decision.

[Alfiesarah in reply to hunter5582]

Thank you. Yes, I am waiting for my Haematology nurse to return which could take a while given past experience ..Unfortunately I do not have access to MPN team. I will make a decision once I have something to go on...just wondered if members here have been in a similar position.

[hunter5582 in reply to Alfiesarah]

If you are in the NHS in the UK then you should have access to a MPN Specialist. It may require referral to another hospital but it certainly can be done. MPN expert consultation is needed for optimal MPN care. You need and deserve optimal care.

[Turfbeg]

Hi, I was almost 70 earlier this year when I had covid. By the time the hospital contacted me about my request for an antiviral I felt I was over the worst. This was about 2 and a half days after I first became ill with covid. I was right as I didn't deteriorate but did feel exhausted for about a week afterwards - I don't think the antiviral would have prevented this exhaustion. Perhaps I was fortunate as I never had a temperature or a cough just one bad night of not sleeping, a headache, tickly chest and a head cold. Hope this helps.

[Alfiesarah in reply to Turfbeg]

thank you..yes it helped..I have since had a chat with my Haematology nurse who checked my levels and how I was feeling. She came to conclusion that, unless I specifically requested them, she didn't think it was necessary. I am relieved as I didn't really want more medication if could be avoided! I don't feel great, tickly cough banging headache, sore throat and achey but nothing I can't handle!

Many thanks

[Exeter21]

I had Covid & on testing positive rang hospital as information for anti viral. I was refused them . I was very I’ll with Covid & bed for week. Dr had to prescribe antibiotics for chest infection created .

[Alfiesarah in reply to Exeter21]

Oh drar sorry to hear thst...I've not even heard from them but my haem nurse seemed to think I didn't need them. I do, however, feel worse today but hoping it is standard for day 3 of Covid. Been told to keep close eye on temp and revert to nurse if concerned! Thank you

[Plavers]

I’m a 72 year old with ET Jak 2 I had Covid and tried to get anti-virals but it took too long and I ran out of time for treatment, because it’s time sensitive. I must say I would have liked to have had them, in my brain I’m thinking‘can’t have too many antivirals. Hope you are feeling better soon Paul

[Alfiesarah in reply to Plavers]

Thanks for your reply; its been 6 days now and I still feel really quite poorly but thankfully it hasn't progressed to anything worse, just no better!

[Rockstone]

I heard nothing off them about antivirals so just got on with it. It was like a bad cold but I am still suffering symtoms 5 wk after and had to have antibiotics off doctor

[Alfiesarah in reply to Rockstone]

Soery to hear this...I am on day 8 and still feel rough...didn't have antivirals but still testing positive. When did you test negative and what symptoms di you still have? Mine seem to be shivers, aches, fatigue, headaches including sinuses, nausea etc! Fortunately my workplace are very understanding..I have been on sick leave for a week but don't feel ready to go back 🙄!