Ruxolitinib and vaccine efficacy

[Rob58]

Has anyone extracted anything useful from the blizzard of recent press coverage and small-scale studies with immunosuppressed individuals, about what exactly is the vaccine efficacy for those of us on Ruxolitinib? I am thoroughly confused and how safe I am now that I’ve been double vaccinated. Can our MPN clinical experts provide any insights?

[WeylandYutani]

Hello,

well this obviously is an ongoing discussion right now, also in my local support group. Most of the one I know, who are immunosuppressed are doing an antibody tests 4-6 weeks after the vaccination. Maybe that's an option as well for you.

I also know one case of a person who had a third vaccination due to no effect; now she sees a slight effect - another option / possibility.

Hope that helps, at least a little.

[DJK12]

All I'm taking from it is we must somehow go on taking extra care while endeavoring to seek some normality - what a conundrum! I do find depressing the silence from Westminster and Scottish Governments about how those shielding are to cope once the famous Freedom Days come. One Westminster minister of health last week said vaccinations were the answer and when it was then pointed out that the jury was still out about their efficacy for us said it would be up to our individual doctors to give us advice. The Scottish Government is said to be going to be writing to shielders shortly but I suspect it will just say the same.

Leukaemia Care has a useful article about antibody tests on its website. It was last updated on 18th June so not completely up to date. It refers to covid numbers being low which certainly here in the east of Scotland is wildly inaccurate - our numbers are awful. What I took from the article and from other sites was they are working as fast as they can to give us answers - very difficult for us meantime.

Diana

[Rob58 in reply to DJK12]

Thanks Diana. I was especially alarmed to read on the Blood Cancer UK site that one study had found that none of the Ruxolitinib patients (albeit a very small sample) had shown a response to the vaccine. Maybe Wayland is right that we need antibody tests to assess this. Meanwhile perhaps it’s best to behave as if we haven’t actually been vaccinated and continue to take all the previous precautions.

[DJK12 in reply to Rob58]

Yes it was a downer to see ruxolitinib patients showing a poor response but as you say it was a tiny number and after only one dose. On balance, despite side effects, rux keeps me going, so I'm afraid no alternative at the moment but just have to take a lot of care. My impression, over the last few days, is perhaps there is more hope mask wearing may be enforced a bit longer. I consider myself lucky that I'm retired and can accept more precautions - just wish numbers here would come down. I'm hearing in this wave of far more people I know contracting it and being quite ill though all in the younger age group either still not vaccinated or only having had one - unfortunately Edinburgh for some reason is, I think, the slowest in Scotland. What we really need is a reliable antibody test which we can understand! Diana

[Otterfield]

I'm afraid all I can add is me too, I'm also confused and concerned now that restrictions are due to be eased considerably. I live in an area where Covid rates have been very low, but it is also a popular tourist area and I am increasingly inclined to hide away again. Even if we have antibodies on Ruxolitinib, that's not the whole immunity story of course.

[ourlife]

Hi Rob58,

I am on Rux, have had both Pfizer jabs and am concerned of the effectiveness and how long antibodies last. I am fortunate enough to be on the ONS survey and am tested monthly, my second jab was in the beginning of April and June’s result was positive for antibodies. I am not told if it is a high or low level, as I have too many red cells and platelets I try to have a positive mental approach that once my body starts making the antibodies it will make more than enough.

Good luck and have fun,

Ourlife

[BlushNoisette]

Hi Rob, I have PV and I've been taking Ruxolitinib for 6 years. I spoke to my consultant the other day and she told me that my antibody response is at a good level . I've had both jabs, 1st in Feb and 2nd in May. The antibody test was done 4 weeks after 2nd jab. Never the less, I am still careful about where I go and at nearly 70, I can't afford to take unnecessary risks.

I hope this helps. I was dignosed with PV in 2006. Obviously, each person wil repond to the jabs in their own way ...... we won't all have a good or poor response.

[Rob58 in reply to BlushNoisette]

Hi Lyn. Your situation and diagnosis is very similar to mine. How did you get an antibody test? And do we know if different Ruxolitinib dosage levels impact on vaccine efficacy?

[BlushNoisette in reply to Rob58]

Hi Rob, My haematology consultant offered me the test and sent me the necessary paperwork for correct samples to be taken and tested. I'm managed by the team at the Churchill Hosp ...... part of the Oxford NHS Hosp Trust. I think the team decided to do a study to look at some of their patients' response to the vaccine. Nevertheless, I would think you can get the test done if you ask. It's important to know ..... especially for people with blood cancers and other conditions too. After all, you need to be able to manage your life appropriately in this Covid world. Best wishes, Lyn

[BlushNoisette in reply to Rob58]

PS. Rob, I forgot to say..... I don't know anything about antibody levels compared to rux dosage. I take 15mgs rux twice per day. Lyn

[skipperL]

I am on Rux 15mg twice a day. I had an antibody test which was negative - so I shall have to continue shielding to a certain extent. It is very disappointing…….. SkipperL