I have PV and when COVID hit I asked my hem if I was higher risk, but he did not know. But we have elevated cytokines already, right? And, for me, my platelets are way above normal so it made sense to me that I'm already at risk for blood clots so the virus wouldn't have to work to hard.
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Elizka
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Thanks for Posting this Link to the Lancet. I actually found the whole article on Lancet, and it does tend to confirm the findings of people specifically in the UK MPN cohort, were more likely to have more severe infections... However, there were many Limitations mentioned too...
I have also previously made a Post or two on the Topic, and found another equally interesting article that suggested that those who stay relatively healthy & fit through a good diet & exercise were probably in a much better place 'physically' to overcome and recover from a CV-19 infection...
Yes, I do take supplements, as I have found that people in general being treated w/ Ruxolitinib, (Jakavi), often suffer from a Vitamin 'D' deficiency... I find it rather peculiar because I do spend a great deal of time outdoors cycling... However, prior to taking a daily supplement, whenever I was tested my 'D' levels were always very low. Apparently, B12 is another one worth keeping an eye on too...
Since recommencing a 'full-on' Plant-based diet, I am also taking a Multi-vitamin every other day... just to be sure that i am not missing anything...
Steve, search on "The Most Dangerous Food You Can Eat For Your Immune System" for it's effect on vitamin D. I haven't cross checked it yet so do followup on it.
Do you have a Reference for the Paper, or are you talking about just a straight out 'Google' search? Beware of Dr Google buddy...
For the Plant-Based Diet I referenced earlier, there are Papers available from their website too, (Gamechnagers.com), which I also flagged, but not much there about Vit. 'D' in particular.
Apparently, the Ruxolitinib (Jakavi) has something to do w/ why the 'D' levels are affected, so in my more simple mind, I just take a 1000IU daily D supplement, and it has returned my D levels back into the normal range...
Steve, I'm becoming reluctant to attach a link because of internet compromises. A search on that title, there are Google alternatives, will take you to a youtube video conducted by an individual who also has a number of subjects that may be of interest to you. Also, do a non-Google search on the effect NAC and glutathione together has on fibrosis. There is an online article titled "Oxidative stress and glutathione in TGF-β-mediated fibrogenesis" you can search on that is one of them. If you haven't done so already, learn the function and creation of each and then together.
I take a long list of supplements and reviews Dr. Rhonda Patrick's research on different supplements. During COVID I have increased my intake of Vitamin D and magnesium as well as C and Zinc.
I only have my 'D' Test done every 6 months now that I know the supplement is actually working. I don't really feel I need anything else as I consume loads of various fruits and eat tons of vegetables, love them too...
There was indeed a good deal of alarm initially about the impact of COVID on people with blood cancers including MPNs. However just to dampen down any unnecessary anxieties in a time of raging anxieties ......
If you listen back to the second MPN Voice webinar update on MPNs and COVID (MAZ - is this still available online???) you will note that Prof Harrison highlighted that MPN patients with ET and PV were no more likely to be at risk from severe disease than the next person. There was some discussion about those patients on drug intervention like Hydroxy and opinion was divided as to whether even that group were more at risk.
The bottom line was that having ET or PV did not by itself put you at risk of severe illness. Age, gender, coronary disease and other compromising health factors were a more useful predictor of outcomes.
Furthermore, in terms of blood clotting issues, Prof pointed out that MPN patients are already reducing those risks and that management of clotting was one of the first interventions for anyone admitted to hospital with COVID.
But this makes no sense even to a layperson. I have elevated platelets. How can I not be at more risk for a blood clout with COVID since I'm already at risk more than the general population? And I have elevated cytokines which it seems to me means a cytokine storm is more likely.
We all need to be safe as we are, but IMO MPN res need to be extra careful. Doctors don't know enough to advise us on this subject. Too early.
I think the point that was being made is that MPN patients are aware of their risks of clotting and that those risks are already being managed. In that sense it seems we are already ‘ahead of the game’.
It is true that there is much that is still not understood about the impact of COVID and that new understandings are emerging all the time. Hence the change in advice with regards to blood cancer patients. And in particular the recognition that not all blood cancer patients (and likewise not all categories of MPN patients) are equally at risk of severe COVID related illness.
I’m inclined to trust the views expressed by the clinicians featured in the MPN Voice seminar. And I’m sure as more evidence emerges those views will be further refined which will further reassure MPN patients.
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