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MDS and Flu Jab

Posted: 29 Aug 2015 09:16
by Goldtooth
Does anybody know the current advice regarding MDS patients and the Flu Jab.
I have asked at the clinic where I'm being treated with Azacitidine and nobody knows for sure if I should have it.
I have left a verbal enquiry at the haematology dept and did not receive a reply, today I am writing to my haematologist for guidance in this matter.
Hopefully I will get a response.

RAEB intermediate, just finished cycle 9 of Azacitidine.

I had Flu several years ago and it's not something I wish to experience again. With my compromised immune system it will finish me off for sure!!!

Re: MDS and Flu Jab

Posted: 31 Aug 2015 13:43
by Bobby Shaw
Hello Anthony,

I asked my haematologist the same question last year. In my case, the advice was to go ahead and have the jab: I did this and will do the same again this year. But you should obviously rely on the professional advice you get as there are clear individual différences. The only written advice I have found is on the AAMDS website ( and then I typed "MDS+flu vaccine" in the search box). I found this quite sensible and nuanced, though it is aimed at an American audience.
I suggested to Sophie Wintrich that it might be useful to put some guidelines on this website, along the lines of the Shingles vaccine alert on the Home page.

Anyway, do let us know if you get a response from your haematologist, and also how your Vidaza treatment goes. All good wishes on both,

Bobby (diagnosed low-risk RCMD in 2008 but needed fairly aggressive treatment from the start: after ESAs stopped working, I was on blood transfusions until I was tried on Revlimid in early 2011: despite not being del5q, I responded well and have now been transfusion-independent for 52 months).

Re: MDS and Flu Jab

Posted: 31 Aug 2015 17:27
by Goldtooth
Thank you for your reply and good wishes.
I'm back at the hospital on 18/9 for pre chemo blood test, hopefully my haematologist will have replied by then.
If not I'll ask the clinic to contact her on my behalf.
Best wishes
Ps will let you know the outcome of my enquiry

Re: MDS and Flu Jab

Posted: 05 Sep 2015 06:39
by Goldtooth
Dear Bobby,
My haematologist telephoned me yesterday and told me it was ok to go ahead and get the flu jab.
I won't get it at my local health centre this time as its so crowded when they are administering the vaccine I don't want to risk catching an infection.
I will have it done at my local branch of Boots who supply it on the NHS thus avoiding the overcrowded health centre.

Best wishes

Re: MDS and Flu Jab

Posted: 12 Oct 2015 12:18
by chris
Hi Antony and Bobby (good to meet you at the London Forum last week!)

At the London Forum on 2nd October, Dr Dominic Culligan said he recommended the flu vaccine for his MDS patients to try to reduce the incidence of bacterial infections resulting after a bout of flu. However, I go to Addenbrookes for my care and there is a notice saying clearly that patients of the Professor and Consultant should not have the vaccination? I haven't actually asked why and whether I should have it in my own case so I think it remains for all of us to ask on an individual basis what would be recommended. The AA/MDS article that Bobby found is useful and it does have a rider saying there is a bit of uncertainty with patients whose immune system is compromised.

It isn't a total protection though as last year the Dept of Health acknowledged that essentially they had picked the wrong type of flu to put in the vaccine last winter,with the result being very low effectiveness. So it still pays to avoid people with any obvious cold/flu symptoms and gel like crazy after being out and about!!

Hope you both keep well

Best wishes


Re: MDS and Flu Jab

Posted: 12 Oct 2015 21:52
by petertee
I had a stem cell transplan in May 2012 and I have always been advised by my consultant to have the annual flu jab about this time. I had the jab last October but in late December I had a temperature and flu like symptoms. I had my treatment at The Christie Hospital, Manchester and I'm still advised to contact the hospital 24hr Hotline with any such symptoms. I made contact and was admitted for 3 days, I was started on a course of antibiotics and viral swabs identified Influenza A positive. I was discharged with a 2 week course of anti virals.

A similar episode occurred in April when I had a fever and flu like symptoms, on this occasion viral swabs identified parainfluenza type 1. I was discharged with antibiotics and anti virals. On both occasions I made a full recovery.

I think the important thing is to get immediate attention at the first sign of a cold or flu like symptom simply because there are so many different strains of flu out there and they can be dealt with if identified early enough. I also think it is important for those looking after us to get the protection of the flu jab too.


Re: MDS and Flu Jab

Posted: 14 Oct 2015 17:53
by Russell
Hi Chris, Anthony, Bobby, Peter

I was advised both pre and post Transplant to have the flu jab (both Kings and my local NHS advised this). I'm definitely in the Dr Culligan camp on this one!