Why are we classed as extremely vulnerable to Covid? I read we may need a 4th booster and we are eligible for the meds should we get Covid. I know it’s because we have a blood cancer but what are the actual risks from Covid if we have ET which is well controlled with Hydroxy and Aspirin? Is it blood clots? Wondering if anyone knows what current research tells us now that we are nearly two years into the pandemic.
With the milder Omicron being the main variant now, are we still at risk of being hospitalised? I work in a primary school and am wondering if I should retire because of the risks of Covid. I don’t want to as I still love it!
Would be interested to know if many ET and PV patients have had to be hospitalised due to Covid?
Sorry about all the questions. I am slightly anxious that I am taking too many risks by working in a classroom of primary school children. I have been lucky so far to have avoided Covid but am thinking it’s going to be hard to dodge with current numbers!
Thanks everyone.
Take care.
Suzy
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I had to contact my GP's as hadn't had one. I was working from home so not particularly needed but i felt better to have for future.
I think the GP's were by and large responsible for who was on the lists, I had to spell it out to them why I needed to be, I have had a running battle with them previously when they refused to sign off my free prescription because it wasn't 'Cancer' in their opinion.
The GP told me then he knew of the new rulings (2008) but he was old school, so I suspect many in our positions may be suffering from narrow minded GP's who refuse to be up to date, and this is 'possibly' why some people were left off when they should have been on.
My sister has ET and never had a shielding letter, and wasn't in the 'Clinically vulnerable' who got the vaccine first, and this was even after she challenged it with her consultant.
Its annoying when medical professionals, even when presented with black and white information, refuse to do the right thing, probably putting their own pride before a patients welfare.
Hi Suzy , , in my view of things it's not so much my underlying issues but the fact I'm still taking an immuno-suppressant. There's a bit of a clue in that "Update for MPN Patients" posted by Maz where it states that Covid treatment drugs will only be sent out to those taking drugs for their MPN not including Aspirin or venesections.
So the fact that you're on HU does unfortunately increase your risk. As for additional risks because of ones ET, PV or MF will depend on a number of factors including other underlying issues one might have (ie COPD) and the Covid strain along with its severity. I believe Omicron in most cases especially for those vaccinated isn't as serious.
I did see a report that said research in Italy showed a fourth dose / booster increased antibody response 5 fold though obviously that was for people not on immuno-suppressant. But it gave me hope that many of us may get a better response than before.
Please don't retire I'm sure your class would miss you. I understand your concerns as there's no doubt schools are high risk but you could catch it going to the shops. Get your booster at the earliest opportunity and make sure that the door is open for you to get the anti viral drug support should you unfortunately test positive.
To echo the above post , hydroxy does reduce the production of platelets but it is a relatively blunt tool and reduces production of all types of blood including the white blood cells which fight infection, so our immune system is considered suppressed
I would still love to know what our actual risk is if we catch Covid. I think I read an article in one of the blood cancer journals that patients with ET have a higher risk of blood clots if we get Covid. Has anyone else looked at any research? I’ll ask my haematologist next appointment.
Hydroxy is keeping all my blood counts within the norm presently so I am wondering why I am classed as more at risk. I would understand if my white cell count was too low.
Perhaps we don’t produce as many antibodies to the vaccine if we are on Hydroxy?
Hi SuzyI am currently in isolation with Covid 19I have myleofibrosis and take Ruxo
I am double vaccinated but as yet not had a boooster.
If it’s any comfort I feel like I have a bad cold but nothing unmanageable just headache, sore throat and a cough. After 7 days I still don’t feel 100 percent but definitely on my up
Not everyone gets seriously ill and no one puts the good news stories out there .
Good to see you're on the up, hope you're soon fully fit (MF apart !) with no lasting effects.
You're right that mostly we hear the doom and gloom and it's been hard throughout to sometimes get a balanced overview particularly earlier on when the mortality rate was so high. There seems to be a consensus that this variant isn't as severe in most cases and many in hospital are unvaccinated or have other health issues.
There have been posts on the Voice about antibody levels and MPNs. Most get a good response. Many UK members have paid for the antibody level test, it's been discussed here.
You would want the "vaccine immunity test" possibly right now and/or after your 4th jab. With a good result you may feel more confident.
Shame we don't have this sort of thing easily in the US.
Regarding MPN and Covid risk, my attitude is every health issue is more interesting with an MPN. I had Covid Mar 2020 before my MPn Dx, then long covid blended with the simmering MPN condition for six months.
Hi I’ve had my three jabs and tested positive a few weeks back. I’m only on aspirin, watch and wait, but will be 60 in a couple of months and my platelets are around 785 to 800 I’ll probably go on Hydroxy soon. Like you I work in a school. To be honest I only felt like I had a bad cold or mild flu. The symptoms stayed for a week or so and even now My taste and smell comes and goes. Beyond that I’m fine !! Also I’d been around kids for a year and never got it and my partner never got it!!? And we live in a very small flat !!? So to be honest you could get it anywhere !! ? not just at the schools. I think I got it when I went for my third vaccine!? But who knows! And most people I’ve heard of just feels like a bad cold if they get it. I’ve been wondering how many of us with ET have had Covid!!? But I am glad I’ve had the vaccines.
Good to hear from a fellow school worker! I think you’re right- we are at risk anywhere, not just schools. Comforted by the fact we all have to do twice weekly LFTs and we wear masks and the classrooms are well ventilated brrrr!It’s also comforting to hear that lots of MPNers have had Covid not too badly, so thank you for your info.
Yes, I’m glad I’ve had the three vaccines and hopefully a booster soon.
Hi, I am now 83 and been on Hydrox for 10 years. After shielding for over a year went to Chester for a weekend and thereafter spent a week in hospital but had Covid fairly mildly. That was back in July. Since then I have spent a month in hospital with my COPD! This sent my FBC high but I am well looked after by my Haemo. Elsie R
Hi Suzy,I have PV Jak2 positive and had Covid in March 2021. Taking HU and baby aspirin along with phlebotomy when needed. Once or twice a year.
When I got Covid I was not vaxxed and did get the monoclonal antibodies as a precaution. The cold I had prior year 2020 which was Covid negative was worse. Perhaps it was Covid too but there were no tests and subsequently I was negative for antibodies.
Not sure if I had Delta in March 2021or the prior variant but overall I did well. Thank God.
My daughter 15 years old, got it at the same time and is a Leukemia survivor 4 years. She also did ok. No meds other then over the counter Dimeatap.
Just to give a little hope my son 11 years old, just tested positive over the holidays and he had sniffles for one day then nothing. Still had him quarantine and no one else in the house got it despite my daughter and I (both previously infected) driving with him unmasked for 2. 1/2 hours.
My antibodies are checked every 2 months and they are currently at 120.
I think our conditions are related and she had an anaphylactic shock to a treatment which contains PEG which is also in the vaccine so we have both opted out of that.
I also had Covid last October (ET, JAK2+, on HU and now Pegasys). I tested negative when I developed symptoms, so assumed it was just a cold. Five days later I re-tested and it was positive. Well, at least I had five days of blissful ignorance, having previously feared ‘Covid-plus-MPN’! I’ve honestly had worse colds in the past; my haem reiterated the risk of blood clots, but thankfully I was okay.
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