The LLS study here suggests 97% of us should get some response from the initial vaccine set. My understanding is your WBC counts, esp Neut and Lyph, are important at the time of vaccine.
A while ago Paul123456 posted an antibody survey. Maybe a good time to do it again.
-Whether you had Covid before the 1st vax, either lab tested or even just if you know you had it.
-If you have any WBC data , esp Lymph and Neut, near the time of your vax.
-Which MPN you have.
-Which medication you took at the time of the vax.
Antibody Test (to the Spike Protein) taken 21 days after the second vaccine with ‘Testing for All’ (UK).
Anything above 0.8U/ml is positive for anti-SARS-CoV-2-s antibodies. My results were 2239.00U/ml out of a possible 2500.00U/ml.
Hope this gives you some insight!
Just a quick note, although the WBC were not in close proximity to the vaccine shots. The readings above are more or less consistent values throughout the five years of my diagnosis, although slightly raised Neutrophils for me on second reading!
Please could I ask what you mean when you say your neutrophils are especially important? My neutrophils have been a problem, a presumed side effect of hydroxycarbomide, they have now balanced out at 1.2 but we’re down to 0.8 . I have had both jabs and now wonder if I have any anti bodies at all. Thanks
My hope is that enough of us would respond here that we might informally learn details about our MPNs and vaccine response. Focused vaccine info for MPNs seems lacking. But we would need a good number of responses to get much info, looks unlikely. Probably not many have good antibody data, I don't.
My simplified understanding is Neut are for T-cells that are long term protection but slower acting and Lymph are for B cells that make antibodies for the first line of defense. So an antibody test should be sensitive to Lymph levels. Others here should know more than I do.
I was high on Nuet before starting HU , while Lymph was ok but a low % of the total since so much as Neut. All are in the range now.
So you would want both Lymph and Neut results.
Here is an update from LLS (Leukemia society) that discussed importance of B cells and thrid dose results. They have shifted their focus to conditions that don't include MPN since we are in a category they seem less concerned about. There are certain drugs that are a problem, HU and Jakafi are not mentioned. LLS does suggest the 3rd dose.
Thanks for the background. It seems timely to try again with so much new info and 3rd shots starting.
How would I bounce a post? I'm new to social media. I could also try a different presentation with reference to that post.
I see the old Paul123456 post. Not so many replies as you say. But it does point to Lymph being important. I was hoping the new info chart at the top would get more attention. But probably we have to leave it to the real researchers even as MPNs are not likely to be a priority for them.
Unfortunately I have not had the test. I can provide my Lynph and Neut for a few time points vs HU doses. See next reply.
I have some pain in my lymph nodes today after the 3rd Pf shot to days ago. It's a sign that the shot should be causing antibodies.
In the US I think you need to be part of a study, like LLS org, to get the quantified one with U/ml data. I think the "did you have it" test referred here is the less precise Yes/No test you can buy at the drugstore.
My original question was inspired by the Belgian study below. (It's hard to get the basic data from the text, but I summarized below) I don't think we can add much in general to this study, but we may have insights specific to MPN.
Some members here have posted elsewhere with zero antibody results. If these were the U/ml type data it would be good to hear.
If we get enough replies here I will try to summarize our results.
Regarding Moderna vs Pfizer, there are many sources starting from early summer that support its being better than Pfizer, both anitbody and outcome, in the current situation. The experts say the different dosing 100 vs 30 mcg could be a main reason. But if you've had covid based on the study below, either is similar at least for antibodies.
I am not aware of similar data for AZ, which is not available in the US. But UK also used longer time between initial doses for many which may give better results.
Some other info I read suggest having covid + vax gives resistance to all variants even SARS1 from 2003. That's if you had Covid circa late 2020-2021. They didn't test having the original Wuhan strain, which I had early March 2020, but I would expect similar. They are thus hopeful that a future vax may be able to cover many types of corona.
As promised, here are a few data points. Without the AB test unfortunately.
Nov 2020 before Dx------------------------Neut=10,139(WayHi) -Lymph=1.9
Nov 2020, before Dx:----------------------Neut= 9.4(High--------- Lymph=1.88
Dec 2020 (just days into HU 1000/day -Neut=6.44-------------- Lymph=1.87
2 doses Pfizer March 2021
Apr 2021 HU 1000/day) -----------------Neut= 2.16--------------- Lymph=1.42
Aug 2021 HU ~500/day since Apr------Neut= 3.12 --------------Lymph=1.63
3rd dose Sept 2021
Has anyone else had so high Neut before treatment? They say severe covid can cause that, I had a medium case but heavy long hauler up to my Dx and still some.
Based on the tiny sample size we have so far and the Belgian study below, I likely have very good AB results to the vax.
Hi. Yes it is a good idea but i think the lack of response is due to people not having all the information. I speak to a different Haematologist every appointment and they all present their information differently and an awful lot goes over my head.
I had my Pfizer vaccines on 31 Jan 21 and 9 April 21.
I have never had covid-19
I am on aspirin and hydroxy 500mg / 1000mg alternate days
My blood results are:
16 Feb 21 - WCC 40.2 x 10 9/L Neutrophils 34.3 x 10 9/L
13 April 21 - WCC 34.1 Neutophils 29.4
25 May 21 - WCC 34.1 x 10 9/L
Unfortunately I dont have the specific results prior to 16 Feb as the hospital have only recently started to copy me in with the letters to my GP, but my white cell count has not changed much over the past year or two. Hydroxy doesn't seem to affect my WCC (trying not to freak out how high mine is compared to everyone else!)
I did have an antibody test at my GP surgery. I specifically asked for the test to identify if my vaccine had worked and not if I had had covid. I was given the result of "no antibodies detected". When I queried this further my GP told me that I was given the test which detects whether I had had covid. My GP told me there is no other test on the NHS and he was not aware that a test to identify vaccine efficacy even existed. So I have no idea whether I am protected or not, I am treating it as though I havent.
Do you have Lymph data? That is supposed to be the key for antibodies
Your antibody U/ml and Lymph results would be quite interesting since your doses were spaced apart for so long and you're no-covid . Of course a real study needs far more data, but still would be interesting.
That is a good idea to take the difference. I tried that but found it's not accurate since there are many other WBC's in a standard US CBC test Below are the typical items listed on my tests. If I subtract all the "other" WBC's I do get the correct Lymph. So you need more info to get this important Lymph number.
Just realised you are in the States? In the UK, people vaccinated in the first few cohorts were given vaccines between 10 and 12 weeks apart. This has now been reduced to 8 weeks.
I recall that UK delayed the 2nd shot when there was shortage. But it seems to be a good idea even still. Currently in US Pf is 3 weeks, Mod is 4 weeks. There is some speculation that Mod is working better partly from the longer delay. (and its 3X size of dose)
“No serological evidence of past SARS Cov-2 infection.”
After numerous requests to have this antibody test following my second Vac, I was eventually given a date for it at the hospital. I have only last week received the copy of results after telephoning on 4 occasions to Haematology only to discover they have done the wrong test, which I thought may have happened. They haven’t done the spike test to determine if the vaccine has produced any antibodies. I am therefore still at a loss to know if this means I have no antibodies.
It will be good to see the antibody results you are waiting for.
I know the antibody tests can distinguish between infection and vax, but I would think they would check both, strange. In the US research quality antibody tests are not standard for most.
Do you have Neut and Lymph results? This is what you would want to know for this idea.
I am not awaiting any antibody test results. They only did the above mentioned one. This was at my request as they are not doing the tests as routine in UK either. I don’t receive full blood test results from Haematology. and they don’t normally show Neutrophils. However from the last blood test on 12th August when they sent the results via their letter to GP this time Neutrophils are given which are given as 8. No Lymph results .
Thanks. Your data would be very interesting since your doses are so far apart. But as you say, you got only the "did I have it" test.
Strange that Lymph and Neut results are not broken out. Esp these days it's well worth having. In the US I believe the standard CBC test always has that. You should ask if possible.
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