Hello everyone. After two years of careful precautions I finally got Covid ten days ago. Needless to say I was pretty worried and knew I needed to get one of the new antiviral treatments rapidly even though I’ve had three vaccinations. The system to get these did not go smoothly. Day one: The team at Guys told me to call 111, who told me to call my GP, who said he had to refer me to my local hospital by filling in a form. The form didn’t mention MPNs and he was not certain that I’d qualify for the special treatment. I emailed a letter I’d received from the NHS plus the MPN advice and these were submitted in support of my case for the drugs.
Day two: unrelated to the GP referral 111 phoned again (I think via the positive test result) to say someone was going to phone me. Texts arrived from NHS telling me someone would call me. Hospital doctor eventually phoned and triaged me over the phone but as it was Friday and the IV team don’t work weekends he said I’d have to wait until day 5 before I could have the treatment. By now feeling very unwell in bed with bad flu symptoms. Over the weekend it got worse with tightening of chest and laboured breathing. Very worried.
Day 5 pm: spent two hours in a portacabin at Maidstone hospital with two very nice nurses who administered Sotrovimab intravenously. Made me feel more tired but otherwise ok. Day 6: the antivirals did seem to have had a positive effect. Day 7: bit of a dip but now at day 11 I am firmly in recovery. A bit of a cough but aching has gone. Mainly feeling wiped out (but we’re used to that eh?)
Conclusion: Covid makes you ill if you’ve got an MPN but antiviral treatment seems to help so request it. Be ready to speak to lots of people and remember to say you’ve got a ‘blood cancer’ as not many people seem to know about MPNs. If you’re on Ruxolitinib stress that it’s an immunosuppressant (another key word). Falling ill on a Friday is not advisable. The system worked after a fashion but the two days of uncertainty shredded my nerves as I was so worried about what Covid would do to me. But I think I’m coming out of the other end and much relieved.
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Rob58
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Well done for your persistence Rob, I don’t know that I would feel like doing all that if I was ill. Good that the anti virals helped you. I hope you soon recover.Best wishes
Glad to hear you were able to access the treatment. I did the same when I had COVID in January. I received Bamianivimab/Etesevimab infusion around day 7. It ended taking 12 days for the primary symptoms to clear. You do have to be persistent and know how to work the healthcare system to access care at times. Glad you were persistent.
Hi rob thanks for your post I have just this week had similar experience regarding the antivirals process. found out I had covid on Wednesday from a lateral flow test phoned 111 who also said phone gp, the gp then sent a urgent referral then nothing for 2 days , then a nearby hospital in Harlow called they asked many questions I stressed I a blood cancer had official email and that it was imperative I get antivirals they said someone would call me again and that was last I have heard apart from a letter which came Saturday about requesting anti virals.Luckily I think I have got over the worst of covid myself but with regards the whole process to get antivirals it’s a bit of a joke.
I hope you were not alone trying to get the antiviral meds, and you had someone to help. When my wife falls ill, it's normally on a Thursday or Friday, and getting hospital staff over the weekend is a nightmare. If she had to cope on her own, I think she'd have died many times over. She and I are still shielding. Happy for you that you are on the mend. I doubt Wales is up to speed on antiviral drugs and MPN yet.
Well done in getting them, I tried in vain with Covid last month bad was passed from pillar to post initially my Dr said that they hospital would call me back in 24hours … never did …. Had to go and get a pcr my haematology nurse said so once I got a positive result I called 111 to be told I was too late as on day 6 of symptoms ! You have to be before day 5So I fought it off myself and still feel weak plus my feet hurt like mad when I walk
Hi Rob, I’m another who was diagnosed on a Friday. I was v impressed with the nhs, a doc had called that evening and prescribed Strovitamib a monoclonal antibody, antivirals no good with Rux. I had wondered why I hadn’t heard re treatment. None on the weekends.Thank you
Hello Rob - glad you are on the mend, but really not good the hoops you had to jump through! - covid is still very much ‘out there’ + I will certainly be shouting very loudly should the need arise for antivirals (absolutely know what you mean about not getting ill on a Friday) - very best for your continued recovery. Anne-Marie.
So sorry to read about you getting Covid after 2 yrs of shielding and then the dreadful trouble accessing antiviral injection. Glad you’re feeling better now. It is very worrying for us looking at the trouble a lot of friends on here have experienced. I am just venturing carefully out now since my 4 th jab and I thought the letter received from NHS setting out details about doing your PCR test (which they sent to keep at home) looked straightforward as it implies once they receive your positive test they’ll phone you immediately with arrangements for antiviral treatment. It is worrying now to realise this may not be as simple as it sounds. Kind regards, Fran
If your immune response to the vax is a concern, you should ask your Dr whether you have access to Evusheld. It's taken *before* you're infected, is preventative similar to a vax, but doesn't require your body to create its own immune response. As seen below, it is not as well known yet as it should be.
<<The treatment could be lifesaving for many who cannot get protection from the vaccine, but confusion about the drug has made some doctors slow to prescribe it.>> <<Some patients and doctors do not know Evusheld exists>>
In the link below there is an up to date video of Claire Harrison discussing Covid antiviral options and guidance of how to access these.
Thanks to Rob58 we have been forewarned of the ‘pitfalls’ that we ‘may’ come up against, and unfortunately, I’m not surprised.
Should I get Covid and feel I need this treatment (not all do), I will persist through all the sources mentioned. I think it’s crucial to emphasise you have a ‘blood cancer’ in any discussion. Some healthcare professionals I have had conversations with (including a GP) thought ET was a blood disorder.
I did read somewhere recently that the free use of these antivirals as originally publicised is now being cut back for the same reasons as antibiotics are, that is if used indiscriminately the virus may develop resistance to their effect, and they will become uneffectual for those whose life may depend on them. I think they are now being prescribed only to those judged to really need them rather than just all with a blood cancer. It's presumably why one is triaged by doctors etc. By all means we should ask, but not expect them as an automatic right perhaps?
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