MATEs FORUM

Afternoon all...

Just wanted to share this small piece of news... After, creating and composing a rather long & detailed letter, (providing scientific peer-reviewed articles for support), my medical team finally accepted that I should be vaccinated w/ Pfizer in preference to AZ...

Interestingly, the ATAGI advice suggests that anyone w/ my condition, (list of variables), should NOT be vaccinated w/ any vaccine at all...

However, after much research concerning CV-19, and particularly in relation to my own MPN & Treatment regimes, I am fully convinced that CV-19 could quite possibly convert me to becoming part of future statistical analysis... Or in other words, that I might not survive the Ride...

In any event, the 1st vaccination was uneventful apart from a touch of light-headedness, headache & a low dull ache on my right shoulder...

My GP has agreed to perform an Anti-body test, a couple of weeks after my 2nd inoculation, in order to ascertain whether or not there had been any seroconversion at all... That will be an interesting finding indeed...

In order to undergo this procedure, I have had to change my Treatment regime, reducing Ruxolitinib, cessation of MTX, and recommencement of Dual Anti-Platelet Therapy (DAPT).

My last Bloods showed a small reduction in Platelets, (860 down from low 900s). However, I suspect that one unintended consequences of Ruxoltinib reduction from 25mg bd to 20 mg bd meant that I experienced an influx of 'Inflammation' I suspect made possible by that said Ruxolitinib reduction... (?)

In any event, so far so good, and I will have my next on October 1st. Naturally, I will provide updates of anything worth mentioning etc...

Hope that you are staying safe & well...

Steve

Thanks for the update Steve. Will be interesting to see the results. My own Pfizer journey was a little easier here in WA but I did suffer side effects after my second dose, I believe related to a flare in inflammation of my psoriatic arthritis which caused costochondritis ie chest pain and shortness of breath. Lasted for two weeks but am fully recovered now. Hoping it means I had a good immune response. Of course I am not taking any immune lowering medication at present. Anyway keep us updated and keep on keeping on Merry

Well Steve. I think you’ve made the right decision and you have been careful your research in coming to your decision. Well Done. Mark

Well done Steve!
It’s a big decision but the right one I am sure.
Keep us posted as you get your second vaccination before I do. Glad you did not have a severe reaction to the first one.

Positive thoughts,
Katie

Evening Katie...

Would have preferred Prof. Petrovky's alternate, however, life does not tarry...

The question concerning possible "seroconversion" is an interesting one given everything I have researched at this juncture.

Nevertheless, the medication alterations might help alleviate that issue (?) One lives in Limbo, does one not? )

Best wishes & please convey my regards to Jerry, Katie...

Steve

Pleased to hear you've had your first jab, Steve. I agree that you are probably at greater risk from Covid than from the vaccine, and with the numbers on this side of the city being what they are and the planned easing of restrictions in 6 weeks, life will get very tricky for the unvaccinated. Incidentally today I received confirmation of a positive immune response to the Pfizer vaccine so I'm quite pleased about that.
Stay safe
Allan

Evening Allan...

Yes, that is most encouraging to learn that you have managed some seroconversion...

Hopefully, with the recent modifications to my treatment regimes, I might be emulating your achievements very soon...

One of the fundamental issues for me is that I also suffer from Acquired Von Willebrands Syndrome (VWS), or Von Willebrands Factor (VWF), if you prefer...

The following article expresses some of the associated problems for anyone contracting CV-19, in association w/ VWF, and highlights that the 'Anti-Platelet' abilities of Aspirin is less effective, when considered alongside 'Clopidogrel'

Patients infected with SARS-CoV-2 are noted to have an endotheliopathy (11,12). Under inflammatory conditions, platelet- endothelium cross-talk exacerbates inflammation and aberrant immunity and impairs the ability of ECs to maintain vascular homeostasis. The interconnection between platelets and the vascu-lature in COVID-19 is supported by autopsy data showing platelet- rich thrombi in macro- and microvasculature (26), characterized by platelet activation and adhesion to the endothelium (Fig.1,EandF), increased vascular dysfunction, and thrombosis (6,7,10,23,26,27). Recent data demonstrate that direct endothelial infection of SARS-CoV-2 is unlikely to occur (14), suggesting an indirect mechanism. Thus, we investigated platelet-EC interactions in the setting of COVID-19 (Barrett et al, 2021: pp. 2)

In vitro experiments found that P2Y12 inhi-bition significantly attenuated the COVID-19 platelet–mediated EC activation. The ability of aspirin to attenuate the platelet-EC interaction was less pronounced. The benefit of reducing platelet MRP8/14 release via targeting of P2Y12 is supported by murine studies, which found that the antithrombotic effect of the S100A9 vaccination is equivalent to that with clopidogrel (55). Furthermore, given evidence that P2Y12 inhibitors reduce platelet release of proinflammatory a-granule contents (56) and the formation of platelet-leukocyte aggregates (57), the beneficial effect of this approach is hypothesized to be multifaceted. These data collectively suggest that P2Y12 inhibition will mitigate platelet activation, reduce platelet-released MRP8/14, and ultimately suppress platelet activity and EC activation and improve clinical outcomes linked to COVID-19 thromboinflammation (Barrett et al, 2021: pp. 11)

REFERENCE

BARRETT et al. 2021. "Platelets amplify endotheliopathy in COVID-19" SCIENCE ADVANCES, 8 Sep 2021:Vol 7, Issue 37
DOI: 10.1126/sciadv.abh2434

PDF Link: https://www.science.org/doi/epdf/10.1126/sciadv.abh2434

Hi Steve,

Glad you managed to get jabbed with a vaccine that does not pose a clot risk to add to your other risk factors. I had my Pfizer jabs quite early on after having discussions with the National Covid Hotline and health SA and convincing them that it should be made available to people with an underlying clot risk. I had significant symptoms after my first dose including mild gastro but almost no side effects from the second dose and recovered within a day or two which is not unlike the rest of the population so I know my immune system at least reacted to the vaccine which is a great sign. I didn't get checked for Ab titre but I am not on any suppressants so did not think I needed to. I hope your seroconversion is good and that we can all look forward to a smoother booster experience later. I am hopeful it will be easier to get the vaccine of your choice once most of the population in Oz has had their initial doses.
The risk of clotting with the disease was enough to convince me that I should get vaccinated and seeing your other post with info on ET patients with Covid-19 makes me even more convinced that it was the way to go for me as I have already had a couple of major venous clots that have caused issues (one in my early 20's and one in late 40's).
As always, thanks for sharing the info you dig up.

Cheers,
SilverET

Hey SilverET...

Lovely to be hearing from you too...

Not so certain I remain, where these vaccines are concerned. Apparently, (& after much research on my part ~ this is something which our governments should provide all the relevant information for... such as they seem to do in a few other countries). Nevertheless, and according to an ATAGI release that I have somewheres here abouts...(?) Anyone, w/ a condition akin to my own should not be having any of these vaccines. Then there's the case of; on the other hand, is the suggestion that any level of protection that "might" be derived by having one of the vaccines, could prove to be better than the obvious alternative of running the gauntlet, indefinitely... one might add...(?)

Hence, my new Med's regime reductions, (& MTX cessations), and like the person in joke: A person is asked repeatedly how they're doing after diving off the parapet of a 50 storey building, and as they passed each floor in descending they replied: "So far, so good..."

My hopefully unrealised fear shall remain just that, & I do not suffer from yet another 'Stroke-like' event...

BTW, i have in my possession a rather interesting very recent study of a particularly large cohort entitled:

"Risk prediction of covid-19 related death and hospital admission in adults after covid-19 vaccination: national prospective cohort study"


I will create a Post for it shortly, as I am sure that most will find it quite interesting, from an alleviating perspective...

Best wishes, stay safe, happy & well...

Steve