Hi I live in Northern Ireland I was wondering what everyone’s status is with regard to covid boosters. I have had my 2 primary vaccines and 1 booster last November, my GP hasn’t called me for further boosters, and I have been told I’m not on the vulnerable category list, although I was during lock down, I have received a date for my flu jab. I have ET jak2 and I take hydroxy 2 per day mon through Friday and 1 Saturday and Sunday I am 63 and reasonably fit. Should I be in the vulnerable category?
Thanks everyone
Pauline
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Roxy1959
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Hi I’ve just had my 6th Covid19 vaccination I live in Wales have ET triple negative & have been on the vulnerable list throughout Covid so have always been sent appointments for the vaccinations. Each one has made me ill though including this latest one so I’m really not sure about having more going forward as I’m fed up of them making me ill when I’m normally fit and well.
I live in England and have just had my 6th injection, with my flu jab at the same time. I had to push early on for the vaccinations (producing the letter on the MPN voice website helped) but after that I was always invited or not refused when I called up to ask. I am 62, ET JAK2+ and take same dose of hydroxy as you. It does seen strange if you were previously in the vulnerable category. For info, I was OK after the double injections (Moderna bivalvent and flu). Two sore arms and tired/under the weather the day after but then OK. I had more side effects after injections 4 and 5 (both Moderna). This time last year I had Pfizer and flu together with a similar reaction to this time.
Do you have a nurse specialist, consultant or someone on your hospital team you can ask?
I am in the USA and have PV. My PV status did not qualify as intrinsic high risk, however, age >65 did. I also have mildly decreased leukocyte count, which is a mild risk factor. Since Hydroxy can depress leukocytes you might qualify as higher risk. You would have to check your CBC to find out.
There is no problems accessing vaccines here. I have had 3 primaries, 1 booster, and last week the new bivalent booster. In the USA we do not wait for a GP to order the vaccines, we just schedule it ourselves at a local pharmacy when we are eligible based on the current guidelines. I can usually have a vaccine no later than next day.
Some people are getting their COVID booster the same day as the flu vaccine. Not my preference due to increased risk of side effects from potentiation of 2 vaccines at same time.
Hope you access the COVID vaccine ASAP if that is your preference.
You are classed as being clinically extremely vulnerable because you take HU which makes you immune suppressed. Therefore, you should actually be on your 6th jab!
I would suggest looking on blood cancer UK’s website, Facebook group, the guidance clearly states that having an MPN’s places us on the covid vulnerable list and enables us to access all the boosters (we’re upto dose number 6) and antivirals should we contract covid.
My understanding is that GP’s are responsible for the coding of patients. You should also request that your GP’s lost anyone you live with as a career, this enables them to also access the vaccines in a more timely manor. Our GP’s we’re good and suggested this to us very early on, both my husband and kids have been able to access vaccines that they wouldn’t be able to otherwise so soon.
I hope you get sorted without too many further problems x
Thank you for replying. I will definitely look at the web site and good advice re household members being listed as carers. I was on with GP surgery yesterday and have made them aware that I haven’t had any vaccine since last November, so fingers crossed they look into it.
I would attend Yr local vaccination centre with your medical details and evidence. Have a chat with the clinic lead. I think you will be entitled to an autumn booster
Hi Roxy - I live in Northern Ireland also and find it very hard to get the relevant information - sort of "secret service". I could not even find out what boosters were being used here no matter how hard I tried. I got in touch with MPN voice and asked which booster would be best and they told me to take either - whatever was offered.
I should be on the "at risk" register. I am Jak2 positive ET and 80 years of age and I also take hydroxy 500 mg. daily. I asked my GP about this way back and she said she knew nothing about it and did not help. I was diagnosed just at the start of Covid and probably missed being put on the register but I cannot find out how to be added in. Like you I was told by my GP to ask haem. team (Ulster Hospital) about the extra boosters and they denied all knowledge and said to ask my GP. She told me she did not know and to ask my haem. team!!!!
I needed a booster some time earlier this year and had read not to take the Moderna as it was being given half strength as a booster and was not good for MPN patients. (This information was in fact correct.) I told GP this and she said " I know nothing about this and if you want the Pfizer you can just phone around yourself to find it". Where did all the caring helpful GPs get to?
Where are you based and what hospital do you attend so that you and I can share any information which comes our way.
I am going for Flu jab on Saturday and may also be offered covid which I have decided I will take.
I live in England, but had similar issues with regards to being recognised as CEV despite evidence to back this from BCUK and MPN Voice. It was vital to be recognised as CEV to be placed in the correct group for vaccinations.
I was literally ‘banging my head against a wall’. I had all the evidence but everyone was either ‘mute’ or passing the buck.
I had to reluctantly contact the CCG who regulate GPs Practices. I explained the issues I was experiencing and my diagnosis (ET) and more importantly state it was a ‘blood cancer’ I provided all the necessary evidence from MPN Voice, BCUK and National Health England. Within days my GPs contacted me, they couldn’t do enough!! I was finally added to the CEV list, which is key.
I’ve attached a couple of links specific to NI which maybe helpful should you continue to have negative experiences.
to mhos61 - Thank you for taking the time to help me. I have looked up the links you suggested. I know the original shielding list was discontinued some time ago. Is there still a need to be registered on whatever followed this? My GP did not know anything about the additional boosters which were offered and left me to find out for myself. I did, however, get an appointment to have the current booster and flu jab but then I am in the age group for this anyhow. The app. was for this morning. I took the flu jab but am rearranging the covid one. I was afraid of a severe reaction and I have an app. on Tuesday for eye injections for macular degeneration and really need to be able to get those. The eye appointments are very hard to get at present.
I see you had your flu injection this morning and hope you will be fine after this. I think it is probably better not to get both together. The covid one offered here is the Moderna.
I had the flu vaccine ten days ago. I felt under the weather a bit for a few days. Today I have had the Pfizer bivalent Vaccine. I’m glad I let some time elapse between vaccines.
Hope your experience with the health care system in NI improves from here on in. If not, advocate strongly for yourself.
hi lovely to hear from someone from NI I attend the ulster hospital originally Dr Hamilton who was brilliant I was diagnosed back in 2010 when 51yrs old my count was over 600 so was just on aspirin until it reached 1300 then started hydroxy 2019 . My consultant is now dr Sharma who seems good although I haven’t had a face to face appointment yet. Like yourself GP said it was consultant to issue vaccine, they said it was GP. Dr Sharma has sent letter to my GP to say I should be getting covid vaccine have just been phoning GP constantly I also am getting my flu jab sat week but no sign of covid vac hopefully I will hear soon.
Keep well and hope you get both flu and covid as your age would make you entitled to get it.
Hi Pauline. I also am under the care of Dr Sharma at the Ulster. Also originally Dr Hamilton. I have just this week received a text from my gp to book in for my flu jab on 15th of this month. The message said if they have the covid vaccines available i will receive it at the same time . This will be my 5th jab tho i did receive a text in May to have my 5th then but i decided it was too soon after the 4th which id only had in Feb. I received letters from both the hospital and my gp when the vaccines were first rolled out. Hope you get sorted soon 🤞mandy x
Dr Sharma has written to my GP so I am going to book a telephone appointment with him to try and get it sorted. I am getting my flu jab next Saturday I have only had 2 primary vaccines and one booster which was back in November, luckily I have managed to escape the covid virus.
Hi Roxy1959. It is bizarre. I have received one letter for the boosters and a letter saying I am eligible for the treatment should I get covid.throughout the whole of this. However I have received all boosters. The GPs seem to not have all relevant information. If you go on the government covid website you can book an appointment for a booster at a local centre. They ask a couple of questions about your eligibility and you are asked to take proof of diagnosis. I took consultant letter and the most recent HU box (emptied). However I was not asked to produce either. I think there is a basic lack of knowledge around ET and MPNS generally so have decided to be more pro active in accessing things like the booster. Good luck.
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