Covid 19 Vaccine

[mark382]

I see on the list of priorities for the vaccine, blood cancers have been mentioned, but it says like leukaemia, myeloma, lymphoma and the bone marrow. There is never any mention of MPNs. Has anyone found any concrete evidence that we will be included in this priority list. Hope you are all keeping safe.

[Superwoman]

I had my letter today that states that I have been identified as being vulnerable, and I will be invited to have the injections within the next couple of weeks, so will wait and see.

[mark382 in reply to Superwoman]

Excellent news for you. Do you think this based purely on MPN.

[Superwoman in reply to mark382]

Not sure, I have ET but as you say I have not seen anywhere that mentions MPNs being vulnerable, my Haematologist said to me that he thought I would not get the vaccine until middle of January, so not holding my breath even though I have got a letter.

[Tico in reply to mark382]

Hi mark. I think its down to your consultant or Gp on whether they consider you more vunerable with an Mpn, I think with Superwoman being 71 it puts her in the vunerable group, therefore higher priority. I'm classed as extremely clinically vunerable, nothing to do with my Et but because of my respiratory condition. You would need to discuss this with your Consultant. During lockdown did you get an email or letter or both about being in the clinically vunerable group? Tina.🤗

[mark382 in reply to Tico]

I didn't get a shielding letter. But when I looked on this forum at the time of shielding it looked to be quite hit and miss who got one. Some on full medication got a shielding letter whilst others didn't. From memory there where some on no medication and only a watching brief an they got letters. I think to compound the issue it depends which UK country you live in. Hopefully we all get the letter we want. Stay safe everyone.

[Ovingite in reply to Superwoman]

Same here. Got an email a few days ago and confirmation letter today. I have no other conditions that would put me into the extremely vulnerable group, so it must be ET

Stay safe

John

[Chaz1]

Hubby's consultant confirmed she'd put him on the list

[mhos61]

I think they may use the former ‘Shielding list’ to determine where MPNs fit with regards to vaccine priority groups. That’s just my take on it, we’ll see!

I never received a Shielding letter, even though I have ET, so I’m expecting to be in the age 65 group.

Interestingly, in the original letter between my haematologist to GP with regards to my ET diagnosis, it clearly states, ET is deemed a cancer of the ‘bone marrow’ so I could argue the point I suppose...

[mark382 in reply to mhos61]

I didn't receive a shielding letter, with PV and asthma. At 64 I'm quite away down the list. Be interesting to see what happens as in a few months I'm 65.

[mhos61 in reply to mark382]

I think with PV and Asthma you definitely should have received a ‘Shielding letter’ but it was all a bit haphazard at the time. Did you push for a Shielding letter at the time? I didn’t! I would make your argument with your GP to be in the ‘clinical extremely vulnerable’ group.

[mark382 in reply to mhos61]

I didn't receive a letter and I didn't push for one as I'm retired, so didn't need it for work purposes. I sort of shielded myself. If I had to have shielded it could have caused more problems than it helped as my wife is disabled and relies on me. As I live in Wales, there was no facility to register with as extremely vulnerable. Trying to get through to the GP for something other than an appointment was nigh on impossible.

[mhos61 in reply to mark382]

Yes Mark, I was in a similar position. I care for my 94 year old Mum, and saw it as an obstacle to that in a way.

[Tico in reply to mark382]

Yes mark. Mary is correct is stating you should have received a shielding letter because of your Asthma alone because its a respiratory condition. I was diagnosed with Asthma many years ago, since been diagnosed with Copd, thats why i'm on shielding list. It might be an oversight on your Gps part but I would discuss it with my Gp as you are more at risk with a respiratory condition and catching the virus could compound an already serious condition. Stay safe. Tina.🤗

[mark382 in reply to Tico]

I was so intrigued about shielding letter and also having more time on my hands due to lock down I actually found a note to medics on how they identified shielding people. With regard to asthma I satisfied 2 out of 3 criteria. I'm on a combined preventer and tablets. I failed, if that's the right word, in that I hadn't been hospitalized a couple of times in 6 months and I'd only had one course of steroids in a 12 month period. With regard to PV, if it had been coded properly it look as if it met the criteria, but under the main code there were sub codes, which were medical things I couldn't get a handle on. Anyway, he ho, I'm still here and hopefully there aren't too many bends in the tunnel so we can see the light. Keep safe.

[Tico in reply to mhos61]

Hi Mary, I think its the Consultants who are a bit confused. My letter after consultation always state no Chemotherapy given but then goes on to say keep taking the same dose of Hydroxycarbamide as before and as we know Hydrea is Chemotherapy and the dose is small in comparison with intravenous chemo but its a toxic drug all the same and informs us on the leaflet its a chemotherapy drug. Maybe some Consultants need reminding of that and the fact its a cancer of the bone marrow! Leaving that aside I hope you and the family had a nice christmas and sending warm wishes for the new year to you and the family and lets hope 2021 is the year of light out of the darkness of 2020. Tina.xx🤗

[mhos61 in reply to Tico]

Thanks Tina.

We had a very quiet but meaningful Xmas. So grateful we’ve all come this far, so many haven’t.

We haven’t seen our daughter since Boxing Day 2019. Just when we think ‘maybe’ there’s some restriction.

I’m sorry you couldn’t be with your family for Xmas day, being on your own must have been hard.

Hope you’re feeling better now.

All the best for 2021. Stay safe, we’re almost there. Xx

[Wyebird in reply to mhos61]

It really seems luck of the draw. I have ET. I had a shielding letter from the government . I think I had one from the hospital too but not from my GP. I had a stroke years ago so maybe that buys me in a higher risk .

[mark382]

So far it appears to be people with ET that have received vaccination letters. Has anyone with PV and no other underlying conditions had a letter.

[NewBloom]

Hi PV and no letter. Consultant and GP advised back in April that as under 65 and PV under control ,I wasn't required to shield but was vuntable. Advised to take more care than general public, stay away from busier areas and limit shopping or avoid.

[Whatsisname]

Hi, PV patient here, on Pegasys and aspirin with no other co-morbidity. I received a shielding letter in June - bit late you may think ! I had a follow up one about 3 weeks ago, but as I live in a Tier 1 ( now 3 from tonight! ) my risk is low. I haven’t received a vax letter yet, but as I’m classified as extremely vulnerable assume I will getting one soon being a few weeks off my 70 th birthday as well.

[azaelea]

I’ve had shielding letters each time . I have ET and am 85 . I had my first vaccination yesterday at local hospital and return for 2nd in 3 weeks. My GPS surgery rang and offered the vaccine to myself and my husband although he isn’t on the extremely vulnerable list. Probably to shield me and because we’re both ancient! Hoping all my fellow MPNers get their vaccinations as soon as possible. Best wishes all for the coming year! Fran x

[mhos61 in reply to azaelea]

Glad to hear that, wish they’d get a move on with my Mum🙁xx

[mark382 in reply to azaelea]

Really pleased that you and your husband are having the vaccine. Keep safe.

[mhos61 in reply to azaelea]

Azaelea, do you know which vaccine you received?

[azaelea in reply to mhos61]

Yes it is the Pfizer vaccine. 2nd one on 20th Jan.

[Spirit123]

Doing in age groups. Over 80 then 75-79 then 70-74 then over 65 makes no difference if have mpn or any other health issue. It’s age that puts us at risk.

[mark382 in reply to Spirit123]

Looking at how it's going, I tend to agree with you.

[mhos61 in reply to Spirit123]

People who are deemed ‘clinically extremely vulnerable’ ie received a ‘Shielding letter’ will be put in the same group as 70-74 age group.

[GardenGal3]

Looks like the UK has it's act together. Not so here in the US. My mom at 91 ought to get her first vaccine in January. I have ET but am not 65 yet, so who knows?!? GA is not one of the more active states in getting things done!

[Devilgirl]

I've had a shielding letter/ email each time - have ET & aged 60. Think it will quite a while before I get the vaccine though as there appears to be some supply issues where I live. My parents both in their late 80s/early 90s are also having to wait as the town where they live hasn't received any vaccine yet.

[mark382 in reply to Devilgirl]

The shielding letters appear to be so random. I have PV and asthma and 64 years young😀😀. Perhaps it's because I'm only on aspirin and venesections, plus asthma inhalers and meds. Hope they sort the vaccine shortage out for your parents.