One for Prof Harrison via Maz?

[beetle]

While I was having my transfusion today I overheard a nurse telling a patient that if they were on any type of immunosuppressive treatment that that should be discontinued before receiving covid vaccine. I am taking 20mg Ruxolitinib twice daily and have a consistently low white count with neutrophils today at 0.7.

Would the advice to stop treatment before receiving the vaccine apply? I am very aware that Ruxolitinib cannot be stopped without tapering off. As this appeared to be new information I hope we can get Prof Harrison’s input please? I fall into the level 4 for vaccination which I understand could potentially happen by mid February

Thanks in advance

Jan

[Melanie66]

Hello Beetle ... It was Prof Harrison who told me ) when I had an inflammation Flare up ) there was no connection between Et/Jak2 and inflammation ...which I discovered was not true .... Each time I ask a health worker about the covid vaccine I get a different answer ....I don’t know if I should stop Hydroxycarbomide for a week or so before Jab ...don’t really think anyone else knows either ???I was not going to take the covid Jab but after hearing of close friends & family members experience of it ..I have changed my mind and want to go for it ...Just don’t know who to ask anymore as all opinions are in conflict ...If I discover any information that I feel will be of service to us I shall let you / our fellow Mpn’rs know ...Hope you get some accurate guidance ... Lainie x

[beetle in reply to Melanie66]

Thank you Melanie for your response. I guess even the best of us can make mistakes at times. I think you have hit the nail on the head by attributing the often conflicting advice out there over the vaccine to the fact that it is all new ground and the answers to some of our questions are just not there yet. I will definitely go for the vaccine when it is offered to me but with a poorly functioning immune system I would not expect to get an optimal response to it. I think personally I will be taking precautions for some time yet but hopefully an end to shielding will be possible when this current overwhelming infection rate subsides.

Best wishes, Jan

[azaelea in reply to Melanie66]

Hi Melanie, I’ve had my first jab of Pfizer vaccine on 30th December and I’m OK. Just had sore arm for day or so. I have JAK2+ E.T. And on 500mg Hydroxy. What is bothering me now is that my 2nd jab was scheduled for 20th January and has now been cancelled according to Government decision. I’ve read various reports that say they don’t know if the Pfizer vaccine is effective if 2nd dose isn’t given within21 days. It’s all so confusing. Regards,Fran

[Tico in reply to azaelea]

You should still shield as they say it takes weeks for the immunity to build up. The Sun newspaper reported the other day that a nurse in Wales caught Covid 3 weeks after having been immunised. Thats why its still important to shield until more data is in. Best wishes, Tina.🤗

[azaelea in reply to Tico]

Thanks Tina. Yes I know we still have to shield ,even after the 2nd when we get it. I’ve been “hiding away” since March as I know most of us have. Keep safe, Love Fran

[Mazcd Partner MPNVoice]

Hi Jan, the reply is : Absolutely not to stop medication at all

[beetle in reply to Mazcd]

Thanks, Maz. That was my gut feeling so I’m glad that is the definitive response

[Jenny_F]

I will take what's available but looking at the three vaccines I would rather have the Oxford one as it appears to be more like the general flu vaccine and I am a little concerned that the others could do something to my already far from perfect immune system.

[beetle in reply to Jenny_F]

I don’t know if we will get any choice in the matter. Somebody with ET on another forum (and in the US I believe) had been told the Pfizer one was preferable but I really don’t know if there is enough experience out there yet to advise us. As you say, I will take whatever is offered but will continue to take precautions because I don’t think the vaccine will give me full protection because of my low white cell count. I hear this morning that all adults will have been offered the vaccine by autumn so hopefully that will do a lot to protect us too.