Covid. Do we still have to receive Antiviral med... - MPN Voice

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Covid. Do we still have to receive Antiviral medication?

azaelea profile image
20 Replies

I have just tested positive with Covid after Husband started with symptoms. I went onto NHS website to report it but it informs that this is no longer necessary. I wonder if we still have to request Antiviral treatment through 111 or GP. I have ET JAK2 Pos.

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azaelea profile image
azaelea
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20 Replies
Exeter21 profile image
Exeter21

No reporting anymore but if you got very sick ring 111. My friend who is a triple heart kidney lung transplant had it last week but was told not necessary for any treatment. It was gone after 48hrs . So it appears to be much weaker than original strain now . Julia 👌

azaelea profile image
azaelea in reply toExeter21

Thank you for your information!

TTA_ profile image
TTA_ in reply toExeter21

If your friend is a triple heart, kidney and lung transplant recipient, given the medication they need to stop the body from rejecting the the transplant, which has to put their body's immune system down, your friend is very vulnerable to infections. Transplant recipients are some of the patients most vulnerable to infections. The only reason for which they might have been told to wait with taking Paxlovid is that Paxlovid could interact with their immunosuppressive medication and result in complications.

This is a study looking at the risk for severe Covid-19 outcomes in solid organ transplant recipients:

"Solid organ transplant recipients (SOTRs) receive lifelong immunosuppressive drugs, drastically limiting the risk of transplant organ rejection. Because of their immunosuppression combined with comorbidities, SOTRs are considered to be at high risk for severe forms of COVID-19. Several studies have reported an increased risk of severe disease or death related to COVID-19 in SOTRs compared with the general population. In their studies of the French population, Semenzato et al. report an increased risk of developing severe SARS-CoV-2 infection not only in SOTRs unvaccinated against SARS-CoV-2 in 2020 but also in those with complete vaccination in 2021."

jamanetwork.com/journals/ja...

Also, because in transplant recipients the immune system is put down via immunosuppressive medication to stop the body to attack the transplanted organs, they often seem like they have fewer symptoms, because their body objectively cannot amount the immune response needed. Symptoms are our bodies trying to fight the virus. Some cannot clear the virus from their system for months:

"Prolonged viral replication in immunosuppressed patients presents the risk of future variant generation and concern for transmission."

link.springer.com/article/1...

I hope your friend truly recovered, as it is not true the newer variants are "milder." If anything, more and more hospitals in other countries reinstated the use of masks as their wards are starting to refill with Covid-19 patients this summer:

" “The elderly and immunosuppressed are particularly vulnerable to new subvariants due to their weakened immune responses to vaccination and natural infection," says Liu. He explains that experts recommend that these groups receive booster shots including the XBB.1.5 monovalent vaccine. This was designed to target the Omicron XBB 1.5 subvariant of Covid-19, which emerged in 2022."

bbc.com/future/article/2024...

Also, newer strains are not "milder" than original strain, there is no scientific support for that. People have more immunity to the virus generally, both via vaccines and, sadly, via infection, which means we see less the devastation that the original strain did before vaccine. Also, and this is very tragic, many old and many vulnerable people lost their lives to this virus, so whoever claims the virus is milder now because not many people lose their lives to it have survivorship bias.

Phantasia profile image
Phantasia in reply toExeter21

My London living sister just had it and she was quite sick. Said it was worse than her first infection two years ago. A triple transplant recipient being told they don't need treatment doesn't sound right to me.

Very odd that.

Exeter21 profile image
Exeter21 in reply toPhantasia

Yes amazingly tested positive & after 24 hrs she felt fine . Had all the Covid injections . She is also a Dr. Seems to be affecting a lot differently. My other friend was bed 3 days wiped out . .

They refused me antivirals too when I had it last , which suggests they are not that confident on them. 👌

TTA_ profile image
TTA_ in reply toExeter21

I do not know what gave you the impression that doctors do not have confidence in Paxlovid when NICE has confidence and intends to broaden the categories of illness that should receive Paxlovid.

If your health care refused to prescribe you Paxlovid they were playing Russian roulette with your health and the only reason for them not prescribing it was the fact that NICE was in the process of issuing new guidelines and this took months and not enough funds were secured in the process.

“Our review of the evidence on the use of Paxlovid has found it offers value for money for a wider group of patients. This is good news for people who may contract covid-19 in the coming months and will help alleviate pressure on the health service.”

bmj.com/content/384/bmj.q59

Exeter21 profile image
Exeter21 in reply toTTA_

My experience was first hand of having Covid & the refusal of anti virus drug . Also a discussion as to why not deemed advisable . We all live in different areas & NHS differs in whoever the luck of the draw you see as happened also in my lack of diagnosis of ET until I rocked the boat after many times asking for proper blood tests 👌

azaelea profile image
azaelea in reply toExeter21

Hi Exeter, I’ve put another post on here thanking everyone for their input and updating my experience.

PH256 profile image
PH256

My mum who has also ET and a Jak2 mutation tested covid positive last January as did our whole family.. It was like a common cold or even lighter than that. She was just told to check out her oxygen level which was within normal range. My dad who has multiple health issues was told to watch his symptoms too. His GP told him that antiviral meds can have serious side effects. Thank God the virus was light and it stayed in the upper respiratory system. What really helped me was eating garlic.. We were negative after 10 days. Hope it will be as light for you too! Take care

HazeBlue profile image
HazeBlue in reply toPH256

I had covid a few weeks ago . I rang Haematology they referred me to covid response and then Response team rang and asked how I was . Within 1 hour a courier deliver anti viral capsules to my door . So report the covid case to haematology and they will arrange meds for your husband if he needs them .

RomaJG profile image
RomaJG

I tested positive for Covid last week. I’m CALR. I called my clinical nurse specialist who arranged for the local Covid hub to call me. They asked a series of questions and determined I should have the ant-viral medication which was delivered by the local pharmacy. Hope you’re on the mend soon.

Sharkdive1 profile image
Sharkdive1

I tested positive July 1st and I’m still sick. My husband and kids took about 2 1/2 weeks to get better but still have a left over cough. Last time I had Covid I took the antiviral and it made me sicker and I also ended up with Covid rebound and then long Covid. Needless to say I wasn’t very happy to get it again. I definitely wasn’t going to take the antiviral this time. Some of our family and friends are sick too with Covid. Some were 2 weeks and others are still sick. They all had the antiviral. The antiviral is always pushed. I feel so many people have it because of lack of recording it. I hope you get rid of it quicker and feel better soon.

ainslie profile image
ainslie in reply toSharkdive1

Can I ask you which anti viral you had

Sharkdive1 profile image
Sharkdive1 in reply toainslie

Paxlovid.

ainslie profile image
ainslie in reply toSharkdive1

I have heard about the rebound etc with that one, they used to offer a different /betterone by infusion but I don’t know if that’s still available

Sharkdive1 profile image
Sharkdive1 in reply toainslie

I’m not sure. I know my parents were given an injectable one, but I don’t know what it was.

AndyT profile image
AndyT

In theory antiviral treatments are still available through GP, 111 or hospital clinic but in practice I’ve heard of people struggling to access them and being passed in a circle between the above!

I took Paxlovid when I had Covid last year and would try to get it again as I do think it helped me get over it quickly.

finlay2106 profile image
finlay2106

I had covid about 7 weeks ago. I'm told there is another wave going round which is hardly being publicised. I have PV and so am on the immunocompromised list. My hospital/haematology team advised me to ring NHS 111 which I did. After various triaging and being asked quite a few questions (I was very clear in explaining my MPN situation) they confirmed I'd get the antivirals (Paxlovid) which was delivered by taxi from the hospital I'm under. They also advised me to check blood oxygen level which was just ok.

You have to be very careful with this med if on other medication (apart from Hydroxy and aspirin) as there's a long list of meds that can cause adverse reactions. I had to stop taking 2 of mine - Tamsulosin and Atorvastatin. I also got 'Paxlovid mouth' straight away where you get a metallic taste in your mouth although this did fade. I think this drug also exacerbated my itchy skin issues after a few days. The side effects of the Covid didn't seem too bad (very runny nose, bit of a cough and brain fog) and I don't know how I would have been without the Paxlovid. I'd also had the spring vaccination booster (my ninth vaccination) which probably helped suppress it.

As previously it seems to affect people in different ways with different symptoms and severity. And yes, you can't report positive test results any more.

So as for having to request anti-viral treatment, I guess it's personal choice as there's no obligation to request it. I also believe that you have to request it within 5 days of testing positive or perhaps first symptoms, not sure which now. After testing negative I was able to go to the local chemist and get a free box of lateral flow tests after showing a recent clinic letter proving I had PV.

Good luck.

TTA_ profile image
TTA_

NHS is just trying to save money by not outright recommending Paxlovid to vulnerable people (Paxlovid is expensive). The science did not change. Vulnerable people still need Paxlovid when infected with SARS-CoV-2 to avoid hospitalisation. It is better to call your MPN specialist and talk to them to get this medication.

The fact that some people got lucky and Covid-19 resolved without events for them does not change the fact that for many vulnerable people Covid-19 is still quite problematic and could lead to hospitalisation. And research shows Paxlovid reduces this risk if taken in the first 5 days after first symptoms.

light profile image
light

Hi, I just had same experience on Thursday, when I asked my GP and they even did not know what that is, but an answer was NO. Then I called 111 and end up in A&E, long story short ,but was told by doctor that they don't give antiviral/Paxlovid due to not being effective. I challenged her by saying that from my own experience it was very good for me three times when tested positive for Covid. Still did not get it when they tested me there again I was negative. However I think we need to go to our MPN team and request it from them. Wishing you well.

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