Hi all, you have always helped me out so again I need to ask a question. I was recently diagnosed with ET but surely I have had this for a long while, my GP was concerned until I raised alarm buttons. Long story short went to the Hemo Dr, had BMB and scans and blood work and nothing showed but high platelets last count was 753 down from 812. Wants me to start Hydroxea finally said ok because the one risk factor I have is over 60, I will be 64 next week. OK so got my flu shot and tomorrow getting the prevnar 13 pneumonia shot as he told me to make sure I got but had heard not to get the shingles shot as it is a live vaccine. OK so I go with husband today while he is getting the flu shot and his Dr starts talking about the shingles shot, I said I can't have that, he says Why? I told him in a week I am going to start taking Hydroxea that I have ET. He said look I have patients on that and they cycle off and when you cycle off you need to get the shingle shot especially if your immune system is compromised! Then he starts telling me how important it is and how people that get shingles can get it in there face and eyes and you can go blind! Well sure scared me! So now what to do, call my Hemo Dr and put off the meds for a couple of weeks or just wait. Don't know what to do???? Anyone had this kind of problem. thanks for any reply! Mickey
Shingles Shot, ET and Hydroxea: Hi all, you have... - MPN Voice
Shingles Shot, ET and Hydroxea
I am into my third year of remission after FCR. Two weeks ago, I came down with my first ever attack of shingles. It started in my mouth and spread to my lip, chin and left cheek. I got to the GP promptly and was started on Aciclovir which has helped (Some reddened areas have not progressed to blister stage). Both my GP and my haematologist (who I just saw on Friday for my routine check up), recommended the Shingles vaccine. I had to tell them both that it was contraindicated in immune suppressed people. Both then looked it up on the Center for Disease Control website and confirmed I was right. The CDC website now specifies that it is contraindicated in people with Leukemia and Lymphoma.
Hi,
There are notices up in the blood cancer section where i go for my check ups at hosptial that tell you not to have it.
It is because our immune systems are compromised and to do with the live virus i believe in shingles.
Sounds like the DR has done a pretty good job of scaring you, doesnt seem very professional in my opinion. But so you know I had shingles not long after i started Ruxolitinib - it started like I has sunburn on my forehead, i went to the GP's who said it seemed like it was but to keep an eye on it for any rash. It took about 5 days for it to come out and as soon as it did i was given pain killers and acilivor.
I got it on my face, in my right eye, and ear. It was painful there is no denying, i was told exactly what to look out for, deterioration of site in my eye, blurring etc and instructed if that happened to go straight to hospital. It didnt thankfully. The worst of the pain lasted a couple of days, then it was just recovery mode. Which took a good 3-4 weeks in total.
I had to stop the Rux until i was better, now i take a low does Acilivor to keep it at bay.
I was told that it is VERY rare for it to have a permanent affect on your vision, some people can get a lasting soreness but i didnt.
I would speak to your Heam for guidance.
Paul
Hello Micky
Like the others I was told NOT to have the Shingles jab as it was too dangerous for us with these diseases, I was told go ahead with the flu as that was ok. Ordinary doctors don't understand the implications of our problems,so go with just what your Haemo doc tells you,they are the ones who know what it all means. Best wishes June
Hi Mickey ,
I have had ET for 25 years and take hydrea and baby aspirin . I always have the flu jab , pneumonia jab and i am booked for the shingle jab on Monday next week. I had an uncle who had a bad case of shingles and he was never cured and the pain nearly drove him mad. I agree with your local doc that with a compromised immune system we all need as much protection as possible .
Will keep you posted if i dont keel over.
One strange thing at 70 I have now outlive two of my close college friends who were normal.I have only one college friend left and he has PV and is now 72.
all the best
Town Crier
Hi Town Crier, whow 25 years that's impressive as you look and sound so good. My Uncle and my Aunt got shingles and it was devasting to them, the one actually was deformed because they mistreated her when she was first diag. I think and I could be totally wrong with ET the only thing that is compromised is our platelets as long as all our other blood is fine. While on this drug due to it does kill other cells or kill other good cells, I think our immune system is compromised and can pick up anything that comes down the pike. that's my understanding. This Dr said he has patients on hydrea and when they cycle off they get the shot, now I don't know what he means when they cycle off???. He could be talking infusions. I think or it is my understanding that taking the drug hydrea compromises our immune system as I had cancer three years ago, was lucky they caught it early, they took it out along with a whole bunch of lymph nodes that they tested to make sure nothing spread and I have not been sick one day other then a sinus infection since and until this year other then those platelets all my other blood work was fine.
May I ask you how old you were when you found out you had ET and how much hydrea you take? Please let me know anything you find out, I am going to call the Dr tomorrow and ask about the shingles shot before I start taking the hydrea. How high were your platelets when you started? Thanks again
Hi , I was 41 in 1986 when something showed up in a medical where a blood technician saw some signs of basofelia where the cells clump together . He wrote Mpd ? in the margin and my Gp at he time had no idea what he was talking about.Ten years later at 50 or so I was in trouble health-wise and a clever heart man spotted the awful blood results with platelets at 2000 or 2 million on the American scale. The haematologist in the local hospital started me on Hydroxy urea as it was then called about 18 x 500 mg per week . Platelets took a year to come down and my present dose is about 11 or 12 a week . generally I keep well , get some fatigue and managed to retire early from work. now 70 yo and do lots of caravaning and gardening and DIY .
as you pointed out shingles can devastate older peoples lives and if there is any way i can have the vaccination i will , but the Cancer research web site is quite emphatic we should not have it . However as my virologist daughter points out if our white cells are good then there should be no or only slight risk.
What i cant find out yet is what happens after the vaccination if things go wrong or is it just a theoretical risk that the manufacture is using to cover himself. will postpone mondays appointment but intend to try and find out the real facts.
will keep you posted
Town crier
so there is a test to find out if your platelets are clumping together or sticky??? If so I would like to know if mine did that test, would that be a blood smear. Yes I like you have heard the horror stories and seen some of Shingles, so I'm calling my Hemo Dr and seeing if I can get it before I start the meds. Please let me know whatever you find out. Thanks
guess that was just a smear of blood on a slide .
Blood testing has come quite a long way in the last 30 years.
Yes I think so and that is one test I'm going to ask about, any info on vitamins, C, E or fish oil besides the aspirin. How aspirin do you take?
hi one baby aspirin and a cod liver oil every day. red wine and the odd brandy but not every day
Town crier
Hi Town Crier, I have just replied to Mickey regarding the shingles vaccine, the advice from Prof Harrison at Guy's Hospital is generally we would recommend against shingles shots from MPN patients on any therapy... I have posted the answer to you as you have said you are due to have the vaccine next week. Maz
Thanks for that Maz , You cant get much more authorative than Prof Harrison. Will see what the locals say as well to see how well communication works to us out in the sticks on pighill.
Chris
Hi again Belay what i just said this is what the US health department says
some people should not get shingles vaccine or should wait.
A person should not get shingles vaccine who:
has ever had a life-threatening allergic reaction to gelatin, the antibiotic neomycin, or any other component of shingles vaccine. Tell your doctor if you have any severe allergies.
has a weakened immune system because of current:
AIDS or another disease that affects the immune system,
treatment with drugs that affect the immune system, such as prolonged use of high-dose steroids,
cancer treatment such as radiation or chemotherapy,
cancer affecting the bone marrow or lymphatic system, such as leukemia or lymphoma.
is pregnant, or might be pregnant. Women should not become pregnant until at least 4 weeks after getting shingles vaccine.
I am going to get some more information as this does not say what is likely to go wrong .
Town crier
The thing that is likely to go wrong is that you could contract shingles actually from the vaccine! I would NOT wish that on anyone. I have had recurrent shingles throughout my life after being in contact with chickenpox as an adult ( never had chickenpox as a child). My son has lost some vision in one eye through bout of shingles a year or two ago.. It's not a disease to volunteer to suffer!! My understanding is - and you could check this with your daughter - chickenpox as a child gives you some immunity to shingles as an adult. Have you ever had chickenpox?
hi beetle , yes i have had chickenpox so hopefully I have some immunity from shingles. the vaccination only reduces your chance of shingles 50% so on balance i don't think the risk of contracting shingles is worth the gains,
Prof Claire Harrison has stated that it is risky for us hdroxy carbamide addicts to have the shingles vaccination so I am sure now that is the best course.
However remembering the agony of my old uncle with shingles it does not altogether give me a warm feeling.
many thanks to everybody
Town Crier
Hi again again found this on the hydroxycarbamide web site
Immunisations and chemotherapy
You should not have immunisations with live vaccines while you are having chemotherapy or for at least 6 months afterwards. In the UK, these include rubella, mumps, measles (usually given together as MMR), BCG, yellow fever and Zostavax (shingles vaccine).
My virologist PHd daughter thinks it all depends on the white cell count if thats normal it should be safe, if its low then dont have it. Still cant find out what goes wrong if you do have it .
will do some more checking next week at the hospital and come back
Town crier
:
When I reached 70 I was offered shingles vaccination. Went to the surgery, got as far as 'do you have leukaemia or any problem with your bone marrow?' . When I said yes the nurse went for advice and came back saying she could not give me the vaccination as it was live and therefore not suitable for people like me. My consultant agreed that I should not have had it.
Sally
hello Mickey64, the advice from Prof Harrison at Guy's Hospital is generally we would recommend against shingles shots from MPN patients on any therapy... Kind regards, Maz
I just checked re shingles shot today with my hematologist and he advised not to have it. Canada Feb 10/16
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