After more than 4 years of not eating out we finally ventured out once for dinner with old friends. Four days later I tested positive. I have 3 days to decide on Paxlovid. Do I go for it or not. I have heard good things and bad things about the drug but not from anyone with a mpn. I am extremely tired, HA's, temp 101, loss of taste and smell but don't really feel "sick" more like a bad cold.
What do you think? Ride it out or risk the side effects of the Paxlovid. The last two people who told me they took Paxlovid said "never again". Any advice? 74 with PV.
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Meatloaf9
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Sorry to hear about the COVID. When I got it a couple n of years ago I did monoclonal antibodies. I was glad that I did. I am not sure what I would do these days with Paxlovid in light of the milder variants most get in the current cycle.
We got Covid in July and our doctor prescribed Paxlovid. The only side effects were that we got better. I have MF so I wanted to knock it out as soon as possible.
I had already made a conscious decision not to take the anti virals should I get Covid. This was in part due to the virus being milder and being up to date with the vaccines. Also, my ET is pretty indolent and I have no comorbities.
I had a bit of a chesty cough, no other symptoms other than extreme tiredness. I slept most afternoons, I remained positive for ten days, but it took between two to three weeks to feel normal again.
It’s a decision you will have to make yourself, but it’s good to get input from others to help you make an informed decision.
ET/PV/PMF are comorbidities that up the risk for infections and poor outcomes from infections, sepsis included. And as both ET and PV significantly increase the risk for clotting, which is something that Covid-19 also does, that is a substantial risk increase for ET and PV complications such as thrombosis and bleeding, and sepsis. A read of the studies below shows that infections are never a good thing in MPNs.
it’s a difficult one really - paxlovid destroyed my gut 2 years ago and still having huge problems fixing it now and reacting to foods and would not normally - I have had Covid 2 more times since then and recovered okay without anti virals - the antibody treatment that Hunter mentioned sounds good and would have much preferred that option if offered at the time and might be worth enquiring about? Wishing you a speedy recovery and take care
Hi, the only option I was given by my Internist (GP) was Paxlovid. Glad you recovered from all especially without anti virals X 2. I don't think they still do the IV monoclonal Abs here unless you are hospitalized. Thanks for your reply.
Given that Paxlovid is recommended for people with MPNs and that despite current misinformation, newer variants are not milder, given that most countries that have a Covid-19 wave right now also have increases in hospital admissions due to Covid-19 (we do not see the wave of sickness and deaths from 2020 nowadays because many vulnerable people have sadly passed away due to Covid-19 early in the pandemic and people also have access to vaccines now), it would be wise not to risk poor health. People think only about the acute phase of Covid-19, but there also is a chronic phase, long covid, that can develop afterwards in up to 10% of the people (and older age, female sex, and comorbidities such as other chronic illness increase this risk even more), irrespective of how uneventful the acute phase was. And long covid is a serious condition. sciencedirect.com/science/a...
As data shows Paxlovid reduces the risks associated with Covid-19, both short-term risk of hospitalisation and long-term risk of chronic illness such as long covid, if you have access to it, it would be safer to take it. It is for 5 days and accounts below saying they were fine without it might reflect a biased view of the reality, in which those who were seriously impacted by Covid-19 do not have the health to be on this website and present their experiences.
If you have a specialist doctor for your MPN, it would be wiser to discuss this with them. Contrary to some beliefs, ET and PV are comorbidities that up the risk for infections and poor outcomes from infections, sepsis included. And as both ET and PV significantly increase the risk for clotting, which is something that Covid-19 also does, that is a substantial risk increase.
I know you want reassurance that your body can make it through without Paxlovid, but that is taking on a lot of risk unnecessarily, when you have something available that can reduce that risk. Talk to your hematologist/MPN specialist.
It’s well known current variants are milder and although there has been a recent increase in hospital admittance it a fraction of what it was back in 2020/2021.
I note one of the papers you posted was from 2021
Whereas it can be serious the majority with MPN and no other comorbities only experience cold like symptoms and recover quickly.
I am on high dose Rux for PV , Rux is allegedly a immune suppressant, my partner who is perfectly healthy caught Covid and I didn’t. I’ve only had 3 vaccines and she had about 6
I write this to re assure (and not uneccasirily scare ) those with MPN re Covid.
Sure back in 2020/2021 it was more dangerous but much less so now.
Personally I wear a FFP3 mask on planes and try to avoid airless restaurants etc, I also nebulise after high risk environments, I havnt caught it yet.
It is good that you take measures, and you were lucky that your well vaccinated spouse did not shed much virus during her infection and you were protected. Every single step in prevention matters.
As I already mentioned in my post, severe acute illness and death are not the only bad outcomes from a SARS-COV2 infection, chronic illness in the form of long covid (described well in one of the studies linked: sciencedirect.com/science/a... is also an outcome. And Paxlovid can reduce the risk of developing the chronic form of covid, long covid.
There is also the matter of increased risk with each reinfection:
"The evidence shows that reinfection further increases risks of death, hospitalization and sequelae in multiple organ systems in the acute and postacute phase. Reducing overall burden of death and disease due to SARS-CoV-2 will require strategies for reinfection prevention."
Given how many more recent studies point that chronic blood cancer patients are still at risk of infected with SARS-COV2, this is not something that should be trivialised. Given that there is a way to prevent severity, one should not discard it.
Another aspect that needs pointing out is that even in the absence of cytoreductive medication or immunosuppressive medication, the immune system in MPNs is affected.
This can result in higher likelihood of infections in MPN patients, and higher likelihood of poorer outcomes in MPN patients when infected:
"These novel findings of an overall increased risk of infections in MPN patients, irrespective of common cytoreductive treatments, suggest the increased risk of infection is inherent to the MPN."
"MPN patients may have lower responses to vaccines due to reduced immunological competence that is related to both the hematological disease and the immunosuppressive and/or myelotoxic effects of the treatments."
"We found that prior to vaccination, MPN patients had reduced numbers of naive CD4 T cells. Furthermore, at 3-weeks and 3-months post-vaccination there was evidence of both delayed and impaired B- and T-memory cells responses. Thus, although, the immune systems of MPN patients can 'recognise' the Influenza A vaccine, the response appears inferior compared to healthy controls."
Immune dysfunction is an integral part of MPNs, and it can contribute to both higher risk for infections and to chronic inflammation:
"In the present review, we focus on the immune landscape in patients with MPNs – the role of inflammation in disease pathogenesis, susceptibility to infection and emerging strategies for therapeutic immune modulation. Further detailed work is required to delineate immune perturbation more precisely in MPNs to determine how and why vulnerability to infection differs between clinical subtypes and to better understand how inflammation results in a competitive advantage for the MPN clone."
"Myeloproliferative neoplasms are burdened by a reduced life expectancy mostly due to an increased risk of thrombo-hemorrhagic events, fibrotic progression/leukemic evolution, and infections. Indeed, an intrinsic MPN propensity to infectious complications was firstly suggested by Swedish investigations performed before JAK inhibitors’ introduction. In a cohort of 9.285 MPN subjects, the 10-year probability of death from infections was 4.6% in PV, 2.5% in ET, and 10.4% in PMF compared to 2.3% in 35.769 matched controls (39). In a further study including 8.363 MPN cases and 32.405 controls, the hazard ratio (HR) of any infection was 2.0. According to MPN subtypes, the HR was 3.7 in PMF, and 1.7 in both PV and ET, with no significant difference between untreated patients and subjects treated during the years 2006–2013 with HU, IFN-α, or anagrelide. During the follow-up, however, the rate of infections raised in patients subsequently treated with ruxolitinib (40)."
Being informed is not fearmongering. It is knowing what the risks are and taking precautions. Some infections are easier to prevent, or at least there is medication that can reduce their severity.
Your first statement, that it is well known that current variants are milder in themselves is not based on science. It is an assumption based on lower mortality than earlier during the pandemic. Several factors contribute to lower mortality, and none of them is linked to the virus being mild:
1. The big loss of life due to Covid-19 in 2020-2021 means that there is a survivorship bias - many vulnerable people are not alive anymore;
2. Better treatment means better survival;
3. Vaccines that reduce severity of infections;
4. Vulnerable people learned to keep themselves safe.
The article below is clear about the fact that severity of illness depends less on the variant and more on whether a person is susceptible or not:
"There is no conclusive information yet about whether a COVID illness will be more severe with the new variants or how symptoms might change. Because everyone is different, a person’s symptoms and the severity of their COVID disease usually depend less on which variant they are infected with and more on their immunity and overall health, the CDC says."
You also refer there to the general population in your statement, while the risk for susceptible populations is still subtantial:
"And yet, while these waves are becoming smaller, they are still having the greatest impact on our susceptible populations: the elderly, people who are immunocompromised and those with other secondary medical conditions. Everyone can play a role in protecting those populations that remain the highest-risk when new variants cause an uptick in cases."
You wrote ""Your first statement, that it is well known that current variants are milder in themselves is not based on science. It is an assumption based on lower mortality than earlier during the pandemic."
That part of what you wrote is correct, what I said wasnt based on any science I read but on what I hear from , doctors, nurses on the front line and people who have had covid recently ie on the ground reality.
I encounter quite a few medical people for various things and I usually ask them how Covid is going , certainly for the last year or so all I hear is its not so severe as it was, still around but symptoms more like a cold. Ive read some of the science you refer to on recent strains but so far the medics tell me its much less of a problem than it was.
I was extremely wary of Covid in the early days and to an extent still am hence I keep a close eye , but the message so far from any medics I encounter is the EFFECT of any covid is much milder and thats what matters.
I believe us with MPN and in particular primary MF should still be careful though. I know quite few people with and without MPN who have had covid recently and it certainly APPEARS they had much milder illness than some I know who had it back in 2020/2021 , some of which are still suffering.
I recently had covid and took paxlovid no side effects apart from a funny taste in the mouth, I still didn't feel that well and tested positive for around 10 days but I also had covid a year ago and although up to date with vaccinations felt absolutely awful in my experience I wouldn't hesitate taking the paxlovid again if I needed to
Hi there, sorry you are having Covid. For me I will always take Paxlovid or the anti-viral. I am patient with ET JAK2+ and for me Paxlovid did the miracles with in two days. I have taken it three time in three different continents. The only side effect is a bitter test while you are on it, for five days. Also, the quicker you take it the more affective it is and it works faster. Wishing you well.
it’s mixed , Paxlovid works very well for some but some get the rebound from it eg Biden.
There were some better treatments on offer at the height of Covid, some intravenous which I heard were good, it maybe worth checking if still available. If Paxlovid is the only one available, personally I would try it but that’s just my personal view only
Hello, I’m in UK and like you got Covid for the first time at the end of July. My husband started with symptoms before me. As I have ET I decided to ask if I should be given Anti Viral treatment. I am 88 and after a phone conversation with NHS Covid Hub I received, not Paxlovid, but another antiviral , Molnupiravir. The Dr. who prescribed this 5 day course warned me they could make me feel sick. On taking the four capsules together morning and night (8) I immediately felt dreadfully nauseous and I could not eat anything, only drink water. Far from improving theCovid symptoms, I just became worse and worse until the 7th day, I was taken to hospital where I spent 2 days on a drip. My experience with Antivirals is therefore I will never touch one again. I took 17 days till I tested negative and am still weak. I don’t know why I was not given Paxlovid. I do admit to a great mistake on my part in that I didn’t have the Spring booster Vax as I couldn’t get Pfizer which I had had 8 times before and didn’t like what I read about Moderna. I have never regretted so much in my life! This is my experience and I agree it is personal choice. This latest strain is definitely not just like a bad cold. Both my husband and I felt like death.
Sounds like you have had a terrible time with Covid and with the anti viral you received. I am so glad that you recovered and are doing well now. I agree with you that this is not just a bad cold. Thank you for replying and hope you are both feeling normal again. Best always.
A month ago I got Covid for the first time (M68). I got it while traveling to be on vacation with my family. I didn’t feel super sick, more like the flu, but I decided (after checking with my MPN doctor) to take Paxlovid. I got better quickly. How much of that was the Paxlovid I’ll never know.
About ten days later I got Covid again! Maybe a better term is, I got Paxlovid rebound, which apparently about 20% of people that take Paxlovid experience. Other people with more knowledge have weighed in here, but if I get the type of Covid strains that are currently out there, I would not take Paxlovid.
When I had Covid in 2022 I took the Paxlovid and not only did I get Covid rebound but also ended up with long Covid. So now when I just had it last month, I chose to not take it this time. I can say that my whole family, in laws, friends and husbands co-workers have all gotten it recently and it wasn’t mild for any of us. Of course this is all just my experience.
Thank you for sharing your experience, I am leaning toward just riding it out as I am feeling a little better, temp is falling and not sleeping as much. Still testing positive. Thanks and best to you always.
Just got over Covid last week. I opted for Paxlovid at the start of symptoms. It worked really fast - felt better abour 12 hours after first dose. No side effects. My oncologist/hemo prescribed over the phone. No co-pay in the USA, either.
My husband (75 yrs) had equally fast results. He is high risk for covid complications. We decided not to do paxlovid for my son (28 with Down syndrome) as he had zero symptoms but tested positive. His youth, extremely robust good health were the reason though technically, he is considered high risk due to his disability.
I had it last year for the first and last time I hope. I took Paxlovid and I have an MPN, Sjogren’s, heart disease, and Hashimoto’s. It helped tremendously! I did have the rebound several days after testing negative for about another week, but no long Covid and no complications, so I would not hesitate to take it again if I ever get it again.
My mum has ET.. My family got Covid last January. My dad who also has many health problems got it and his GP told him to watch his symptoms and measure the oxygen levels. He said antivirals cause severe side effects. My mum's symptoms were very light.. I was also afraid cos I have asthma. It was much easier than any other cold.. For all of us it was like a mild case of the common cold. We were all told by docs to watch our oxygen levels.. Bear in mind that me with the asthma had better oxygen levels at that time than now that I am fine. The last variants thank God affect the upper respiratory system. Hope you will feel better soon! Take care..
Hi, I got COVID twice, causing high temperatures, took Paxlovid both times, felt better within a day. The only side effect was metal taste in mouth. In my case it worked extremely well. Good luck!
hi there. I had covid in June with no symptoms exceprt for sore eyes. I felt completely healthy but blood tests showed that my white blood cells were decreasing and my ‘neutrofils’…. Whatever they are were reading 0.8 very look. I was kept in the acute medical ward in hospital for a week with intravenous antibiotics and offered a 5 day oral course of PAXLOVID which I took and in my case, had no side effects. All good again. I have ET and am in Ireland. Good luck with your decision and your recovery🤞🤞🤞
Thanks for sharing your experience. I decided not to take the paxlovid. I am getting better every day so far with no temp for 3 days, still feel more tired than usual and I am still testing positive. Hopefully things will continue improving. Thanks again, best to you.
After a 4 day short break in Istanbul last year I had Covid, with terrible breathing. I was in hospital for 2 nights and had antibiotic infusion and then given 5 days of Paxolivd with consent of the haematology team, but was told to stop taking Ruxolitinib for 5 days. My chest cleared up well, but I took 26 days to become negative! No side effects in my case I'm pleased to say. I've been on Ruxolitinib since 2013 and hydroxycarbamide before that since 1983.Which ever way you choose I hope all goes well.
Wow, it sounds like you had a very rough time. I have not had any breathing issues just a mild cough early on so I decided not to take the Paxlovid. It seems that it goes both ways and that there have probably been more positive comments on Paxlovid than negative. I'm glad that everything worked out well for you, best to you going forward.
So sorry to hear of the passing of your mom. I did not take the paxlovid, I am still testing positive for covid but improving. God bless you and your mom. Best always
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