AussieNeilAdministrator11 years ago

Were you given a reason for the recommendation on why you shouldn't have the pneumonia vaccine (which I presume is Pneumovax 23)? Does the place you booked into for your vaccination know you have CLL?

Just over 5 years ago (about a year before my CLL diagnosis), my GP recommended that I have this with vaccination with a booster in 5 years time to give me lifetime immunity. Given the higher mortality risk of respiratory infections with CLL, I asked for the booster when it was due last year. My GP said that recommendations had changed and now only one vaccination was given to the general public, but given my immunocompromised state, I qualified for a booster. The vaccination was uneventful (but per the reference below, this isn't always the case) . I've just checked the Therapeutic Goods Administration (TGA) site in Australia and my GP's advice was correct per the TGA recommendations: "The TGA is advising that revaccination with Pneumovax 23 can be undertaken in accordance with the approved Product Information (PI). In summary, revaccination:

* should not be given routinely to immunocompetent individuals (that is, those with a healthy immune system)

* should be considered for patients at a high risk of serious pneumococcal disease, provided that at least five years has passed since the previous dose of Pneumovax 23."

also:

"Pneumovax 23 vaccine is known to be associated with a high rate of local injection site reactions. The majority of these are mild, with redness, swelling, pain and a feeling of heat around the site where the injection was given and recovery within a couple of days. Some reactions can result in extensive swelling and pain that can limit the use of the arm. Cellulitis-like reactions and abscesses can also occur."

Seems to me to be a pretty good trade off for possible lifetime immunity to one common strain of pneumonia - bearing in mind that vaccinations are less effective for us...

See: tga.gov.au/safety/alerts-me... for the full TGA report.

Neil

stewie11 years ago

hi Neil ,

sorry slightly confusing how i worded the question no health professional has advised me not to have the vaccination but they never mentioned or advised me to have this vaccination , with the flu jab they openly encouraged the vaccination just wondered why ?may be they do not feel its warrantied ? is it worthwhile having the vaccination? ie GP or consultant never mentioned it . i phoned up the practice said i would like the vaccination explained that i had cll they booked me an appointment with the nurse to have the jab .

David3911 years ago

I was advised to have the pneumonia vaccine along with the flu jab, though it was a couple of years ago now - not sure if it's the same vaccine used now as then. I had no ill effects other than a temporary sore swelling at the injection site, as AussieNeil mentions. Even if it provides only partial protection, that sounds better than none.

HAIRBEAR_UKFounder Admin11 years ago

Hi Stevie

It has been missed on occasions. As I was already on the at risk register because of a co-morbidity at 47 I was already on the annual flu vaccination list. At diagnosis the general haematologist never informed me about CLL suppressing the immunity and vaccination requirements. it was only when I was refereed to a CLL specialist that she checked that I was receiving both the flu and pneumococcal jab that I found out it was a recommendation.

so like you had to call the GP and have mine brought up to date. I thought it was required every ten years, but seem to remember reading that CLL patients require it every five years even though we mount a very poor response to it. I am an early CLL patient so bank on getting more of a response to it than someone later on with the disease. so work on the principle that while my body can mount a response it is worthwhile for me.

Regards

nick.

Myrddin11 years ago

I was certainly advised by my consultant to have the annual flue vaccine and a pneumonia vaccine with a booster after 5 years. GP surgery encourages everyone upto and over certain ages or anyone at risk to have the flue vaccine. You should never have a live vaccine if you have cll. So seems to be one thing we can do to help ourselves.

CllcanadaTop Poster CURE Hero11 years ago

The new recommendation to the CDC in the U.S. is that immnuocompomised patients get both vaccines for pneumonia.

This is new as of October 2012.

13-Valent Pneumococcal Conjugate Vaccine and 23-Valent Pneumococcal Polysaccharide Vaccine use in immunocompromised.

cdc.gov/vaccines/acip/recs/...

cdc.gov/mmwr/preview/mmwrht...

Certainly discuss this with your doctors...

Hidden11 years ago

I was recommended to have the annual flu jab and the PPV jab every five years. I must say that almost every health professional I have seen over the last few years has asked if I have been vaccinated.

I did recently read about a recommendation to also have the PCV vaccination. For anyone considering it, there is a requirement to wait one year if you have had the PPV vaccine!

henrymck11 years ago

While getting the flu jab in October I was strongly advised to get the pneumonia jab also. Strangely the advice was given by a stand-in not by the usual suspects at the doctors who had never mentioned it at all. When the usual nurse administered the jab I got the impression that she felt it unnecessary. It certainly was a cool reception. Or perhaps I am too sensitive...

jangreen11 years ago

Hi My GP just contacted me one day to come along and have the pneumonia jab. I didn't argue.

Tanagergreen11 years ago

My haematologist recommended this pneumonia vaccination and I had it in November, at the same time as the flu jab, with no ill effects. It lasts for 4 or 5 years.

CllcanadaTop Poster CURE Hero11 years ago

Spread out your vaccinations... Flu first...

Makes good sense, if you give both shots and the patient has an adverse reaction ...how do you what vaccine is causing it?

So if your doctor suggests both shot flu and both pneumonia shots have the flu then the PPV13 then the PCV 23 about 8 weeks after I believe is what the CDC suggests...

I suppose also...There is a case to be made about vaccine overload on the immune system, but nohing much is known...

~chris

Hidden in reply to Cllcanada11 years ago

Chris, you have a C and P inverted. Just to clear any confusion......

PCV13 then PPV23 eight weeks later.

If you have (or have already had) the PPV first, you will need to wait a year before having PCV!

Mike

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MsLockYourPostsPassed Volunteer11 years ago

I plan to discuss this with my hematologist on my next visit. There is a confusion about whether one should get a second pneumonia PCV 23 five years later or every 5 years. I did get the first one about three years ago and plan to do a second, and to get the PPV 13. Too many CLLers die from pneumonia, not CLL.

CllcanadaTop Poster CURE Hero11 years ago

Thanks Mike for catching that R-CHOP brain...

Wish comments could be edited... but they can't. Hopefully his will get fixed.

Hidden11 years ago

I think only option for editing is to delete your own posts and then repost.

Mike

CllcanadaTop Poster CURE Hero11 years ago

Ya..then it is out of sequence...this site has problems frankly... it is also very iPad challenged, and Javascript often fails to complete ... tiny edit boxes, images don't load, scaling fails, the list goes on...postings fail ...you get the OH SNAP! page way too often...very slow for some functions...hopefully the next generation will improve things...

Oleboyredw-uk in reply to Cllcanada11 years ago

Not just me then! It is most annoying when I type a long response click reply or submit and ..... nothing or an OH SNAP.

Rob

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sassy126111 years ago

I have CLL and had the pneumonia vaccine, my ex husband has CLL and because he did not have any symptoms and did not get bugs he refused to have it. He went into hospital for an op three weeks ago, got pneumonia and have been on a ventilator ever since because the antibiotics cannot get rid of the pneumonia. Today they had to give him a tracheostomy. I'm very surprised you have not been advised to have the jab.