Hi,
Having tested positive for Covid for the first time I contacted the NHS regarding anti virals, I was not offered them as they said I no longer needed them and the powers that be had changed the criteria.
I have ET Calr taking peginterferon.
Has anyone else been told this ?
Would appreciate your views.
Thanks Lynn
just an update to say I have contacted my specialist nurse who advised me I should still be getting the anti virals. I am still within the 5 day window so if things don’t improve I will contact 111 again. Hopefully this may help someone else who find themselves in the same situation. Fingers crossed all goes well. Lynn
How are you doing? Like a bad cold or getting worse?
Thankyou for your reply, chest feels tighter and hurts when I cough, headache not so bad, am going to go back to CMDU unit today to advise them what the specialist nurse has said. I am not breathless but feel more achy around the rib area. See what today brings.
Fingers crossed for you, can you keep us posted how you get on 🤞🏻
hello . I had covid on 17th March 23 and was informed I would be contacted by a nurse within 24 hours and if not, to contact my GP/111/or treating hospital in that order of response . Haematology responded and confirmed they recommend antivirals but couldn’t prescribe unless I was a in patient. After 36 hours from onset, I was contacted by a nurse from the covid centre at Manchester Royal to assess . A dr rang the next day and prescribed an anti viral which was delivered that afternoon from another hospital, along with an oximeter. The next day I was contacted by a virtual covid ward who monitored me daily. I was asked to report my oxygen and pulse rate on a dedicated App , daily at 10a.m. If my oxygen was 95 or below I was contacted within the hour by a nurse . If 94 or below a Dr. This carried on for ten days until I tested negative and oxygen returned to normal . I live alone and felt totally reassured . The antivirals markedly improved unpleasant symptoms within 48 hours . The only problem was antivirals are unsuitable for patients with lactose intolerance but the benefits were ‘ a price worth paying’
Thankyou for your response, it sounds like your treatment and monitoring was exceptional once it kicked into place. I have contacted 111 again this morning as I do feel things are not getting better and I should be getting the anti virals, they are making another referral to CMDU, still waiting for a response. Getting vaccines and now anti virals has been a bit of a task for us, let’s hope things get easier. I have also ordered myself an Oximeter. Lynn
I have ET with CALR and am on Pegasys.
I got Covid for the first time in February and was prescribed Paxlovid quickly after I reported my positive test.
My symptoms remained mild and I got no side effects from Paxlovid except a bitter taste in my mouth, so would definitely take it again.
Thankyou for your response, it sounds like your treatment and monitoring was exceptional once it kicked into place. I have contacted 111 again this morning as I do feel things are not getting better and I should be getting the anti virals, they are making another referral to CMDU, still waiting for a response. Getting vaccines and now anti virals has been a bit of a task for us, let’s hope things get easier. I have also ordered myself an Oximeter. Lynn
I felt worried without response for 36 hours but once in the system, it ran smoothly . I think the weekend slowed things up too. The haematologist recommended Paxlovid and that’s the drug the ‘covid centre ‘ dispensed . Good luck
It’s all a bit of a lottery with the NHS isn’t it. I’m sorry you are suffering with both Covid and getting the antiviral meds.
Had Covid October last year. Logged on NHS app. They said someone would be in touch in 24 to 48 hours regarding antivirals. Still waiting. Fortunately I wasn't too bad. Felt like mega hay-fever. Maybe be didn't get antivirals as on venesections and aspirin. PV for 15 years.
Thanks everyone for your messages and concerns. The CMDU has now agreed that I can have the Anti Virals, just picked them up, told by the doc there that their Info/ guidance was not up to date. On ringing 111 they kept saying Thrombocytopenia not Thrombocythemia, not sure if this was where any confusion came in. Anyway, now I have got them and hopefully they will help.
It really should not be a battle though for everything we are entitled to. If your not your own advocate these days you just don’t get the support that’s needed. If you find yourself in this position please question the responses you get.
Thankyou Lynn
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