MATEs FORUM

Afternoon all...

Just in case any of us do suffer from an 'Acute CV-19' experience, this article and subsequent video discusses what might be the likelihood of ongoing complications for those of us with an MPN.

While it does suggest greater fatality rates for MF patients, it also highlights Venous Thrombolelic Events (VTE) for those with Essential Thrombocythaemia (ET) too. It goes on to suggest the possibility of ongoing lingering or (Long Covid symptom burden), which incidentally appear to be primarily something that all if not most of us already know, Fatigue & other related MPN symptoms. Hence, the suggestion that this might happen in up to 40% of the patient cohort, might also be seen as MPN progression, in my view...

The overall rate of thromboembolic events in patients with MPN and COVID-19 was 8.6% (n = 14). Strikingly, most of these events were VTE, indicating an association of VTE events observed in this study with COVID-19 rather than MPN, where arterial thrombosis is more common. However, patients with ET and COVID-19 experienced significantly more VTEs compared with patients with PV and MF, where the event rate was similar to patients with COVID-19 but without MPN, who were treated on regular wards. Vascular events occurred shortly after hospitalization and were associated with shorter survival. Independent risk factors for thrombosis were an ET phenotype, elevated NLR, and transfer to ICU. While most thrombotic events occurred within 15 days of COVID-19 onset, bleeding events were more frequent ~2 weeks after COVID-19 onset.

. (Barbui et al,2021)


Be interested in your thoughts as always...

Best wishes, stay safe & well...

Steve





REFERENCE

Barbui T, De Stefano V, Alvarez-Larran A, et al. 2021."Among classic myeloproliferative neoplasms, essential thrombocythemia is associated with the greatest risk of venous thromboembolism during COVID-19." Blood Cancer J. 2021;11(2):21. DOI: 1038/s41408-021-00417-3
https://mpn-hub.com/medical-information ... g-covid-19


Barbui, T., Iurlo, A., Masciulli, A. et al. 2021. "Long-term follow-up of recovered MPN patients with COVID-19." Blood Cancer J. 11, 115 (2021). https://doi.org/10.1038/s41408-021-00509-0

Thanks for that Steve. It was very informative ( and eye opening I must say).
Mark

Thanks for posting this Steve.
An interesting preliminary study which, as the author suggests, was somewhat limited by the relatively small number of participants. There are so many variables with MPN patients e.g. MPN type, mutation type(s), therapeutic treatment, blood counts, medical history etc, that this study could only draw limited conclusions. Also, of course, the study occurred pre-vaccine availability so if it were repeated now there would be yet another set of variables to factor in. The take home message for me is to take every precaution to avoid catching Covid.
Keep safe
Allan

Afternoon Mark & Allan...

Yes, I found both articles of extreme interest simply because they both highlight the two most limiting factors concerning the longevity for the lives of us all, and especially so for those of us with the extra burden of an MPN...

VTE, is considered as a factor for those w/ ET, who might suffer from an attack of Covid-19...

I have recently had to pen a number of letters because I am Post ET / MF w/ the added complication of Von Willebrands Syndrome (VWS), which sees my acquired Von Willebrands Factor increase as I approach the 1 Million marker, which in turn places me a far greater risk of having yet another Stroke event...

VWS studies have revealed that I am at greater risk of further VTEs, and this renders the AZ vaccine as inappropriate, in my view...

My last Stroke event saw me forced to use a walking stick for almost two (2) weeks... I grew most apprehensive & was questioning whether or not this was "My new Life" post stroke event... Fortunately, & as you all know, I made a full recovery and completed my cycling challenge etc.

Due to both my MPN & my Immunosuppressive Treatment regimes, my studies indicate that the creation of seroconversion antibodies is most unlikely. In order to better facilitate their creation, however, I have recently ceased taking Methotrexate (MTX), as having both Ruxolitinib & MTX means that seroconversion is most unlikely...

...However, to do so places me a even greater risk of another Stroke, as the MTX has been keeping my Platelets slightly lowered. To compensate further, I have recently reverted to taking Dual Anti-Platelet Therapy (DAPT). This involves AM low dose daily Aspirin, & Clopidogrel PM every alternate day...

My next FBC this Monday will reveal how successful DAPT has been, if at all...?

All of this is premised upon being able to acquire an mRNA style vaccine, (& the jury is still out w/ very low stocks etc), as the AZ risk for me is too high & much like playing Russian Roulette...

However, again, my Specialist, (who previously offered me Pfzier), has recently taken leave, (told me she's applying for Kerry Chant's position?), and it means having to bring my next Specialist back up to speed on all things MPN... in relation to my own heterogenous MPN version etc...

Fun times...

Hope you guys & your family's are all safe, happy & well...

Best wishes

Steve

Hi Steve,

Thanks for posting the info on VTE. Not sure I wanted to know, having ET myself!!
Seriously though, it is wise to know these things so some precautions can be taken where possible.

You sound as if you are having a few problems of your own. Do hope things are not getting you down.

Best wishes to all our MPN ers and look forward to seeing you all on the next ‘coffee catchup’ Zoom .

Katie

Steve, you are having to make some big and challenging decisions re juggling your medications. You are doing a great job at maximising your health and wellness my friend. I agree with Katie - it will be good to catch up. Who knows, if the lockdown end in a couple of months, maybe we can have a face to face catch-up at Pattinsons in St Ives? Mark

Morning Katie & Mark...

Yes Katie, always good to stay abreast of some of these studies etc...

Mark, hopefully, into the "Not-too-distant..." a physical Cafe-Catchup might once more become possible... However, we may have to stick at the ZOOM variety for the interim...

I will make a new POST concerning having a ZOOM Cafe Catchup very shortly guys...

Best wishes

Steve