Encouraging consultation: Hi all again I just... - MPN Voice

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Encouraging consultation

Inclement profile image
11 Replies

Hi all again

I just thought I'd share some of the regular telephone conversation with my MPN specialist this morning. She implied that recent research is now showing MPNs are just as receptive to vaccines as others, 95% was mentioned, and that she didn't think I would be getting any booster. Stressed that I could still get Covid, but wouldn't be life-threatening, though should still seek medical advice if I did get it and it got worse over time. I found this conversation surprising but encouraging. Maybe my individual condition (2 years+ of PVR Jak pos, aged 73) is specific to her assessment but thought I'd share anyway.

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Inclement profile image
Inclement
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11 Replies
ksos profile image
ksos

Thanks! This is encouraging.

Turfbeg profile image
Turfbeg

Hi! My understanding is that the effectiveness of the vaccine fkrus seems to depend on the medication we are taking? Can I asl if you are on medication for your MPN and if so which one? Many thanks,

Inclement profile image
Inclement in reply toTurfbeg

Hi. Yes I forgot to mention that. I have been on Hydrea since diagnosis, stable atm on 1000mg six days and 500mg on Sundays, plus aspirin, plus thyroxine and BP medication generally. Hope this is encouraging though I realise everyone is different. But after 18 months self isolating with hubby and scared to venture far I do feel a bit happier now. Regards.

Turfbeg profile image
Turfbeg in reply toInclement

Many thanks!

Maisie10 profile image
Maisie10

Hello. Thank you for sharing. This is encouraging, like you I have been very cautious. I have PV Jaks 2+ diagnosed 6 years ago. Take care x

PhilReade profile image
PhilReade

My Antibodies test showed 50% half what it should be

Inclement profile image
Inclement in reply toPhilReade

Yes I realise we are all different in our reaction. Though I seem to have picked up from others that antibody tests don't show the whole picture, as T cells may kick in to help out? I didn't intend to say we were all totally protected, but it did seem reassuring from a reliable source though I and most others will no doubt continue to take care not to put ourselves at risk.

azaelea profile image
azaelea

Thank you for sharing this encouraging news. I have ET JAK2+ and been on Hydroxy 500 mg daily for 3 years with couple of short breaks. I requested an antibody test and on last telephone appointment with Haematology ( not usual Dr), had to ask for result and was briefly told “You have no antibodies”. I requested a copy of report, over a week ago….still waiting! I do realise antibodies are not all that matters in protecting us from Covid but it would be helpful to know if correct test was in fact done. I take heart in what your Dr. has told you. Regards,Fran.

KentBee profile image
KentBee in reply toazaelea

Hi, JAK2POSITIVE ET, on Hydroxycarbamide 500mg daily Monday to Friday and 1000 mg Saturday and Sunday, aspirin and two other meds. I asked Heamotologist for an antibody test as like many others have been shielding and very nervous of mixing. I was told that I couldn’t have antibody test unless had leukaemia. A simple antibody test May allay many of our fears. Est wishes to everyone

Meatloaf9 profile image
Meatloaf9

That is encouraging news. Thank you for sharing. Very happy that you are doing well. Be careful. I had my 3rd dose of pfizer vaccine last week, never been tested for antibodies. Best to you going forward.

Very nice to hear Inclement and thanks for sharing. Sounds like your fear is just as big as mine, although double vaccinated we don't want to find out "how" sick we might get right? I'd like to share that I read some recent articles about blood cancers and covid and the fact that its not fully researched ... but also talked about how the covid vaccines efficacy is much lower then 95% and different for many but still states that the efficacy is much lower or nil... scary! ! Taking HU strips the immune system so the vaccinated are the worst effected by the efficacy of the vaccines. My MPN doctor will tell me what basically the same thing as that article but then my family doctor will tell me there's no problem ... of course I'll listen to my MPN doc. I think the virus and the vaccines are so new that research has to go alot further still. Lets continue to be vigilant in protecting ourselves.

AGAIN THANKS FOR SHARING INCLEMENT IT'S ALWAYS GOOD TO HEAR THESE LITTLE UPDATES FOR SURE!!! Be safe.

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