Hi, has anyone else had experience of this? I can't find anything online to suggest that ET makes me immunosuppressed. Yet when I called the doctor's surgery for a repeat prescription today, the receptionist told me I am entitled to free flu jabs and one off pnemococcal jab due to bei g listed as immunosuppressed.... I'd be interested to hear your thoughts! I am 42, ET JAK+ diagnosed in 2012, taking clopidogrel only.
Best wishes,
Lucy
I was given a flu jab last year and assuming I’ll have another this year although in a new area and they are only doing the over 65s at the moment. But I don’t know if it was because of ET or stroke. Probably both! Jacquie
Maybe if your doc ran lab tests to check your immunoglobulin levels they could determine if you have immune deficiency. Before I would accept any vaccinations I would talk to my doc about checking my immunoglobulin levels and let them have the chance to evaluate my immune system. Don’t all MPN specialists do this? Many cancers are associated with immune issues
Are you taking Hydroxycarbamide? If so that can affect immunity because it reduces white blood cells (if I understand correctly).
That's what I understood, but I'm only taking clopidogrel! I'm going to talk to my haem next time I see him in November...!
Absolutely standard practice. If you have an MPN, along with anyone with a blood cancer, you will be offered a free flu jab on the NHS. If you’re not offered one then ask for one! You can also get them free at high street pharmacists like Boots (or anywhere offering free jabs to those entitled to one - tick the cancer box). The extent to which we are immunosuppressed as a result of having ET, PV or MF appears to be open to debate but the consensus seems to be that having the disease will affect to some degree our ability to fight infection. Have the jab!
From what I understand it is the ‘chemo’ treatments that can lead to the immune system being suppressed?
I’m ET treated with pegalated interferon. I am in regular contact with children with a variety of bugs etc. And work in a healthcare environment and have never picked up any bugs that have been going around. I believe my immunity is as good as anyone’s.
I have chosen not to have the flu jabs but yes, they are available free to all people with cancer due to the potential ‘low immunity ‘.
I would talk to your haematologist if you are unsure.
Thank you, I will be talking with my haem in November... It just took me by surprise being classed as immunosuppressed!
I wanted to ask you about interferon and ET. Did your doctor gave it to you from the beginning?? Do you also have any molecular response?
Hi, no, over about three years I tried anagrelide, hydroxy and daily interferon, and suffered with side effects and varied and unstable responses, before going onto pegalated interferon.
I have no idea about molecular response. However, my platelet levels seem to have stabilised and the side effects are more than tolerable.
Hi Lucy, as Ebot says, this is standard practice: as cancer patients, MPN patients are entitled to free flu vaccinations. I have had the shot for 4 years now, since diagnosis, as my haemo strongly recommended it. Prof Harrison’s team at Guy’s was running a trial looking at the effectiveness of the flu vaccine on MPN patients, it will be interesting to see the results.
Yes, I'll be interested in knowing what the outcome of the trial is too, I think I just get taken aback when I feel so well and get told by a receptionist at my doctor's surgery that I'm immunosuppressed!! News to me...
I have had the flu jab since having a stroke several years before my pv diagnosis. This year will be the first one since starting on ruxolitinib. I have been told it does not give as much protection when taking rux, but to have it anyway as reduced protection is better than none at all. Has anyone else been told this?
Carol.
I’m under 65 and have been having flu jabs free on the NHS since they were first introduced. Initially because I was employed as a nurse (all medical staff get offered it) then after I took early retirement I got it from my GP because of having ET and Hydroxy. I have never had the flu, bad colds and the occasional chest infection but never the Flu. I am immune suppressed and get numerous little infections if I garden without gloves. As for the flu jab, the under 65 vaccines aren’t live so will not do you any harm. The 65 plus vaccine is a live one so check with you doctor first before getting it.
I was told that the over 60s flu jab is not live and therefore I should have it, but cannot have the shingles vaccine as it is a live vaccine.
It's the children's one that's live. The adult ones (above 17) are inert.
Thank you so much for all your replies, it's so helpful to hear your experiences. I feel so well most of the time, it always catches me unawares when I'm told something new about our condition. I'm a nurse and like to think I'm fairly au fait with what's going on! I'll be having my regular flu jab anyway, as I believe it can protect the vulnerable people I care for at work, plus I don't want to be off sick.
Best wishes to you all
Lucy
Hello, yes I too am offered a flu jab. Very helpful. I think any meds you might br taking potentially could make you more likely to get an infection. I am ET 61 yrs and take Hydroxycarbimide
I had to pay for mine last year, I must try again this year and quote this forum. Thanks for the tip.
I am a major skeptic regarding the flu vaccines. I know so many people who got the flu despite the vaccine, even young healthy people. I was never offered one by any of my doctors (I live in Austria) although I’ve had 6 TIAs. I keep myself as healthy as possible through organic AutoImmune Paleo diet, detox, meditation, good sleep, laughter, prayer. In the 2 years before my diagnosis, I had 5 colds that lasted for weeks and only went away with antibiotics. Since my diet (2 years now), I had one single cold and I got rid of it in 36 hours with just 9g of vitamin C daily. I will not allow myself ever a vaccine again. My immune system is stronger while on chemo with supplements and diet in the last two years than when I was 10 years younger. I’m for correct Information regarding vaccines, learning about our bodies, checking out our immune status and not giving a vaccine only because someone is on a particular list or has a particular interest. We are all individuals and some of us fragile, some stronger. We need individual care in order to remain as healthy as possible.
Please get really well informed and really think through such decisions. Not easy. Wishing you a flu free winter!! Anag
Thank you, I hear what you're saying, I think our diets can really affect our health, sounds like yours is brilliant for you.
The flu vaccination can only be made using data from previous years viruses, so they'll never cover us for every strain for the current year anyway. It's definitely something I weigh up carefully, and feel that in my profession, I also have a responsibility to protect my patients.
All best
Yes. My diet is the standard AIP adapted to my personal needs. We all need to find what fits each of us best. It is also adapted to my family individually and they have gotten rid of rheumatism, dermatitis and the psoriasis is 1/2 gone. I also understand your last point. One of my best friends is an anesthesiologist in heart/lung transplant. She got the meningitis vaccine and gone meningitis last year!!! Poor thing. She got through. She is now almost back to normal. She said she was probably infected in the hospital. ? Who knows. Scary.
Hi. I get the flu jab every year. I’ve have a Pneumonia jab (which lasts 10years, I think mine runs out in a couple of years).
I was told I have to be careful of viruses, infections and even getting a temperature or if I didn’t feel well at all, go and see my doctor.
I’m E.T, jak2 +, myelofibbrosis.
I am 69 and have never missed a flu jab especially now I am in HU n clopidogrel. Both my GP and haematologist said it's fine to have flu jab, it is not live vaccine.
I’ve qualified for the free flu jab on this basis due to lowered WBC from treatment with interferon - my GP said it was a borderline decision but certainly worth having the jab and if they’re giving it free I won’t say no..!
My husband had the adjuvanted trivalent flu jab for people over 65 last week. It is supposed to give better protection in older people.
The quadrivalent flu jab for people with long term medical problems will be available next week, and I have my appointment.
It is free at the GP surgery.
Flu is really nasty, it can take months to feel better, best avoided.
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