Molnupiravir: Molnupiravir has anyone in the uk... - CLL Support

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Molnupiravir

wmrxg08 profile image
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Molnupiravir has anyone in the uk had this new game changing treatment.

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wmrxg08 profile image
wmrxg08
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40 Replies
lankisterguy profile image
lankisterguyVolunteer

Hi wmrxg08,

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I'm sorry there have been no responses to your request. FYI- you may want to read more detail from our parent Charity ( cllsupport.org.uk ) here:

mailchi.mp/8d1cd429c3f6/cll...

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Len

whmk profile image
whmk

I don't really think this Merck drug is a game-changer. The best defense is still to get vaccinated. Vaccines will reduce deaths in the average person by 95% to 5% while the Merck antiviral is just 50% effective against deaths. Thus vaccines are still 10X more effective in preventing COVID-19 deaths. If you do catch COVID-19 after vaccination, Monoclonal antibodies are near 74% effective and should be your second line of defense. Should the new Pfizer anti-viral prove itself, it may offer a better COVID-19 defense.

pfizer.com/news/press-relea...

Justasheet1 profile image
Justasheet1 in reply to whmk

Problem is that the vaccine didn’t work for me as I’m on ibrutinib.

My go to is Regeneron but it’s nice to have a plan “B”.

whmk profile image
whmk in reply to Justasheet1

While the Merck pill should provide some protection for CLLers, there is no evidence to believe that the Merck antiviral works as well for us either. Immunocompromised people will always be more susceptible to infections than the average person and we are seldom included in clinical trials since we tend to bring the efficacy results down.

PaulaS profile image
PaulaSVolunteer in reply to whmk

Yes, immunocompromised people will always be more susceptible to infections than other people, but we do respond to anti-virals and antibiotics, better than most of us respond to vaccinations.

When CLL patients have shingles, the first thing they should be given are anti-virals. Some take longterm antiviral tablets as prophylactics against shingles, because Shingrix vaccination is good but not 100%.

Seems good to have a belt and braces approach and do all we can to reduce our risks. These new antivirals do give us some extra weapons in our battles with infections.

stevesmith1964 profile image
stevesmith1964 in reply to Justasheet1

HiThe vaccine probably has worked but not on the antibody side. Remember antibodies are only part of the immune response to the vaccine ... T cell , macrophages etc are also involved.

I was on Ibrutinib when I had my first covid in May , double jabbed NO Antibodies, and it was mild just a headache. I second covid infection was more like a cold and I have mild breathing issues on day 10 but SATS were 97%. As a precaution i was admitted to hospital via AE for monoclonal antibodies as a precaution. My consultant is extremely proactive with his patients. I was diagnosed stage 4 1 year ago so had Obinatuzamab and Ibrutinib immediately. Had my 3rd Jab still no antibodies and hope the NHS respond as well when I get Covid the next fee times.... as with 2 kids under 5 they pick it up from school and nursery.

Keep safe and remember the immune system is complex.

Justasheet1 profile image
Justasheet1 in reply to stevesmith1964

Steve,

Thanks for that encouraging and positive response. I’m sure that you put a smile on more than just my face with your post.

Covid twice already and going strong; you’re an animal. The problem with the vaccine is that it apparently doesn’t work for guys named Jeff like me and cajunjeff As your name is Steve, that is probably the reason for your good fortune 🤔😂👍🍻

Well done my friend.

Jeff

PaulaS profile image
PaulaSVolunteer in reply to whmk

Hi whmk,

The flaw in that thinking is that vaccines don't work so well for most CLL patients. It's even worse for those on Ibrutunib (as Justasheet1 as just said).

I'm sure vaccines will reduce deaths for CLLers to some extent, but none of us are the "average" person whose likelihood of Covid death will be reduced from 95% to 5% after vaccination. (Not sure where you get your figures from, as I don't think 95% death rate is correct even for the "average" person.)

However, I believe anti-virals DO work as well for the immuno-compromised as for other people. And as tablets they're likely to be more accessible for people, rather than the intravenous monoclonal antibodies - which are not easily available outside of the USA.

As you say, the new Pfizer antiviral Paxlovid sounds like an even better defence than Merck's Molnupiravir. It may also have less side effects. More tests need to be done but I'm hoping Paxlovid is proven safe and becomes available soon. I believe these new anti-virals really will become game changers.

Paula

JigFettler profile image
JigFettlerVolunteer in reply to PaulaS

If approved or authorized, PAXLOVID™, which originated in Pfizer’s laboratories, would be the first oral antiviral of its kind, a specifically designed SARS-CoV-2-3CL protease inhibitor. Upon successful completion of the remainder of the EPIC clinical development program and subject to approval or authorization, it could be prescribed more broadly as an at-home treatment to help reduce illness severity, hospitalizations, and deaths, as well as reduce the probability of infection following exposure, among adults. It has demonstrated potent antiviral in vitro activity against circulating variants of concern, as well as other known coronaviruses, suggesting its potential as a therapeutic for multiple types of coronavirus infections.

pfizer.com/news/press-relea...

FIRST of its kind... I wonder what sort of push back this novel antiviral will evoke.

BUT(!) it offers us hope and that is worth a lot.

... I am thinking - will this antiviral medicine tech extend to other viral infections in due course.

Jig

PaulaS profile image
PaulaSVolunteer in reply to JigFettler

It would be great if it was effective against other viral infections as well, Jig.

For now they just seem to say it may be effective against other corona viruses, but who knows???

Paula

whmk profile image
whmk in reply to PaulaS

Paxlovid could be a real game-changercbsnews.com/news/pfizer-cov...

PaulaS profile image
PaulaSVolunteer in reply to whmk

Yes, it certainly looks like a possible gamechanger, whmk :-) We live in hope....

Paula

Annie1920 profile image
Annie1920 in reply to whmk

Are you sure the poster was proposing this as a first line treatment? I was tested for antibodies with spike and neucleocapsid test after 3x jabs and the result was negative so any possibility of a treatment should I get Covid is encouraging in extreme

whmk profile image
whmk in reply to Annie1920

Don't know but many anti-vaxxers are proposing this as a game-changing alternative without fully understanding the math or science. Of the available products, the best choice is still vaccines and then MAB as a backup.

Annie1920 profile image
Annie1920 in reply to whmk

Of course that is the right route.. But since I have had 3x jabs O+V which I'm on, depleats tells and I have had a negative antibody test it certainly holds out a bit of hope to me 😊😊❤️

bennevisplace profile image
bennevisplace

I have to agree with whmk healthunlocked.com/cllsuppo... that Molnupiravir is not a game changer for people with CLL. As an early stage treatment to prevent progression to severe Covid its 50 % efficacy is no match for monoclonal antibodies from Regeneron, GSK and Pfizer - based on clinical trials at least.

The UK bought 480,000 courses of Molnupiravir and the NHS has yet to announce how the drug will be deployed. In the US the regulator is certainly not rushing to authorize its emergency use.

Mijoed profile image
Mijoed

There is also Evusheld (monoclonal antibodies) from Astra Zenica that is waiting approval. The trial of that was apparently quite successful.

bennevisplace profile image
bennevisplace in reply to Mijoed

Yes it was, as a pre-exposure prophylactic - the only such MAb to have been trialled on that basis. The kind of protection CLLers have been dreaming of.

Bahrain is the first country to license Evusheld (aka AZD7442) for emergency use, and it's in the regulators' sights in the US, EU and Australia. In the UK, unfortunately, the future availability of Evusheld is in doubt.

Mijoed profile image
Mijoed in reply to bennevisplace

Yes, there was the Provent trial that I joined. Eleven months later I still have antibodies, although levels are dropping. I’ve had quite a few antibody tests and that drop doesn’t seem to have been interrupted at all by the three vaccine doses. There was also a post exposure Stormchaser trial, but I don’t know how successful that was.

bennevisplace profile image
bennevisplace in reply to Mijoed

Good to hear, what does the latest quantitative Ab test say?I am also in the PROVENT trial, but disappointingly in the control group ☹️

Re Storm chaser: healthunlocked.com/cllsuppo...

Mijoed profile image
Mijoed in reply to bennevisplace

The first month was>2500 U/ml. This has gradually declined over the months to 131 U/ml, tested a few weeks ago. They report anything over 0.8 U/ml as positive

KatieBlue profile image
KatieBlue

Unfortunately molnupiravir is mutagenic to mammalian cells. Links below for information and the extent of what I know regarding molnupiravir at this time.

Molnupiravir

academic.oup.com/jid/articl...

twitter.com/rolandbakeriii/...

twitter.com/r_h_ebright/sta...

twitter.com/christosargyrop...

twitter.com/deepakdeepak/st...

twitter.com/christosargyrop...

washingtonpost.com/opinions...

Edited to add 2 more links -

forbes.com/sites/williamhas...

forbes.com/sites/williamhas...

Etheldreda profile image
Etheldreda in reply to KatieBlue

Thank you very much for these links which are saying that molnupiravir is carcinogenic. They are saying that we could be saved from Covid, but die later of cancer!? We need more information on this! Maybe we don't need to fight for access to it.....

Annie1920 profile image
Annie1920 in reply to Etheldreda

Think I believe health experts over twitter posts any day myself

PaulaS profile image
PaulaSVolunteer in reply to KatieBlue

Thanks for sharing these links, KatieBlue. I haven't read every one (left out most of the Twitters), but the science seems extremely complicated.

I couldn't follow most of the first link, but at the end it says (drugs like Molnupiravir) "represent a potentially important drug for use in the current and future pandemics. However, the risks for the host may not be zero and these risks need to be carefully evaluated..."

In reality, there are hardly any medications where "Risks for the host" are completely zero. But it's certainly a concern.

I find it surprising that the UK government has already approved Molnupiravir, if the science behind it is so uncertain. They are usually very slow in that way. But when lives are at imminent risk, it can make a difference. If I had just been diagnosed with Covid and couldn't access monoclonal antibodies, I think I'd be happy to take Molnupiravir.

As Etheldreda has said, we need more information on this.

Paula

P.S. Your last link to Washington Post was much more positive, about Paxlovid. :-)

JigFettler profile image
JigFettlerVolunteer in reply to KatieBlue

More or less mutagenic than FCR I wonder? Albeit but different routes...

hutampico profile image
hutampico

Can't say for the U.K., but I read a report that the "new" Merck antiviral is basically a reworked iteration of,... of all things,... Mercks' Ivermectin. Nothing concrete.. I need to look into that angle some more... I CAN say that I have been taking Artemisimax 150mg. once to twice a day since June or July of 2020 after 5-6 days of it wiped out my lymphocytosis in my peripheral blood in early April of that year... Aussie Niel some time back posted a cautionary post regarding as to how C.B.D. had done the same to some folks, but that, whereas CLL cells are vulnerable to various such things in the circulatory system, while alternately that it was suspected that CLL cells may sequester themselves in the lymph nodes, or perhaps the bone marrow via creating a protective "microbiom" in those regions versus the peripheral blood. I haven't had a C.B.C. since my last Merchant Marine physical in June, but I was still presenting NO lymphocytosis as of that time... I figure tomorrow I'll go to Quest Diagnostics for another C.B.C. to show my hematologist in Reynosa, Mexico when I visit down there.

AussieNeil profile image
AussieNeilPartnerFounder Admin in reply to hutampico

"Merck and Pfizer are each developing a new oral antiviral drug that might prevent or treat COVID-19. The pills are very different from the antiparasitic medication ivermectin, contrary to claims online that they are “suspiciously similar” or that the companies are “repackaging” ivermectin in a ploy to increase profits."

factcheck.org/2021/10/scich...

hutampico profile image
hutampico in reply to AussieNeil

I'm just continuing the Artemisimax 150 MG once or twice a day combined with Quercetin, D-3/K2, Zinc, etc. as part of my normal regimen. I initially took the Artemisinin for its' antiviral/anti-inflamatory action in early April 2020 having studied such reports as the Max Plank Institutes' studies, and Mateons' ongoing Covid-19/Artemisinin trials in India. The disappearance of lymphocytosis in the peripheral blood the past 18 months has been just a,... hopefully,... fortuitous development.

Strech51 profile image
Strech51

Hi. I have just been tested positive for COVID. Yesterday I tried to get hold of Miolnupiravir spoke to GP and CLL specialist nurse both are not really aware if it. GP is going to see if there pharmacy distributer has a supply. But I have also heard that is not being rolled out until December. It seems like everything else loads of publicity when a drug is found but then we have to wait. Disappointing.

bennevisplace profile image
bennevisplace in reply to Strech51

How Lagevrio (Molnupiravir) is to be deployed is yet to be announced, but I'm surprised doctors haven't even heard of it.

Did you ask about treatment with Ronapreve?

JigFettler profile image
JigFettlerVolunteer in reply to Strech51

I hope you do well with Covid! Not great hearing a positive Covid test is your own!

Have you contacted your Haematology Team? Cons, Sec, CNS, the Day Case unit, the Haematology Ward... in your search for prophylactic?

Jig

Strech51 profile image
Strech51 in reply to JigFettler

I have contacted the Triage department who basically said come back when it gets worse. The triage department is also part of the hospital which deals with CLL and doesn't have an A&E. COVID is dealt with in A&E. I am not sure whether they would link up. Its just a case in trusting the NHS .

Regards Steve

JigFettler profile image
JigFettlerVolunteer in reply to Strech51

OK?

What is worse? Unless you're medically qualified, do they tell you?

Hope you have your oxygen saturation monitors ready.

Just wishing you the best!

Jig

Strech51 profile image
Strech51 in reply to JigFettler

Thanks JIg. Yes go it ready as well as my thermometer. Going into battle with those for now.

Regards Steve

JigFettler profile image
JigFettlerVolunteer in reply to Strech51

Stay in touch.

Go well.

Jig

Strech51 profile image
Strech51 in reply to JigFettler

Will do.

Regards Steve

wmrxg08 profile image
wmrxg08

Rang 111, put onto local pharmacy they contacted there wholsaler, drug not available, past into my GP receptionist never heard of the drug but arranged a telephone consultation next Monday which is just outside my Covid isolation period. The good news is I'm feeling a lot better just coughing . So looks like in my case the vaccines have prevented severe illness.I have written to my local MP asking for the health secretary to be taken to tasks for making sweeping statements in parliament about game changing drugs.

bennevisplace profile image
bennevisplace in reply to wmrxg08

A recent article in Nature about two "Covid pills", Molnupiravir and Paxlovid. nature.com/articles/d41586-...

FarmerJacks profile image
FarmerJacks

Yes, I was interested in this. It was reported as approved on 4th Nov here bbc.co.uk/news/health-59163899

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