Have you had the HIB vaccine?

Have you had the HIB vaccine?

I’ve heard of at least two CLL folk recently, who've had nasty bouts of Pneumonia that were caused by Haemophilus influenzae type B (HIB). This bacteria is nasty - it can also cause other illnesses including meningitis.

Pneumonia is one of the biggest killers of CLL patients, and we are often advised to get Pneumonia vaccs. But the standard two vaccs for Pneumonia (Prevnar 13 and Pneumovax 23) don't give any protection against HIB infections.

However, there is a HIB vaccine that is recommended for CLLers. If you haven’t already had this, I suggest you ask your doctors about it. Sometimes it is given in combination with other vaccs (eg against certain strains of meningitis), which can also be useful.

I often see questions about vaccinations on this site, so I’d like to post the following link again. (Many thanks to pkenn, lenkeck and cllcanada who have shared this link before). Scroll down to the second chart and look at the row for "weakened immune system” as CLL comes in this category.

cdc.gov/vaccines/schedules/...

Recommendations for vaccinations keep changing, and it’s hard for doctors to keep up. So, it can be useful to print out this up--to-date chart, to show them. Soon even this chart will be out-of-date, as hopefully the new “non-live” shingles vacc will be available, and should be safe for us. However, till then, the chart correctly says NO shingles vacc for people with weakened immune systems.

It’s sadly true that CLL folk don’t generally respond so well to vaccinations, but the sooner we have them in our illness, the more chance there is of them getting good responses. Even if there’s only a small chance of them giving us some protection, it is better than nothing.

I got the vaccs quite late in my disease, but the doctors were surprised at what very good responses I got (as shown by blood tests a few months later). I believe the Pneumonia ones may well have saved my life, when I was struggling with a chest infection last autumn. So please bear with me if I keep going on about vaccinations….

Paula

P.S. The heather is starting to bloom on the Derbyshire moors... large areas are beginning to turn purple...

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21 Replies

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  • Thanks Paula, a good reminder to us all

    Dick

  • Thanks for this reminder Paula. As you know, I did succumb to pneumonia 4 months ago but am unaware of the specific strain. The Consultant merely called it a 'humdinger' which didn't reassure me one bit. It's four years since I had the pneumo vaccine and I'm not sure which one it was. My GP doesn't seem hot on vaccines it seems so if necessary I'll print out the chart. He's always more persuaded by 'official looking health guidance'.

    Definetely something to be avoided at all costs if at all possible.

    Warm regards,

    Newdawn

  • I remember your gruelling experience with pneumonia, Newdawn... and your vivid description of the time in hospital... Definitely something to be avoided if at all possible...

    As it's been four years since you had a pneumonia vaccine and you only had the one, then it was probably Pneumovax, because Prevnar has only been recommended more recently - and it usually needs us to do some pushing to get it. Yet I've heard that Prevnar is much more likely to be effective than Pneumovax... So, I'd go for it if I were you... And a few months after you've had it (the Prevnar) you could probably have a repeat of the Pneumovax. Belt and braces...

    It's hard when your GP is not hot on vaccines. In England there seems to be uncertainty as to whose responsibility it is, to give CLL patients the recommended vaccines. Some haematologists expect the GPs to do this sort of thing, but the GPs are assuming the haematologists will do it - or at least will advice on what is recommended. And there seem to be financial implications too... I'm not sure how it works... But it seems this is something we need to take the initiative with, and be our own advocates.

    I'll be interested to hear how you get on, when you talk to your GP. Hopefully having seen the chart, he will be happy to give you Prevnar as well as HiB, and maybe the meningitis vacs too. I'm not sure whether having diabetes would make any difference... It might give you a stronger case - not that you should need one...

    Best wishes,

    Paula

  • Timely reminder...wonderful bee photo Paula... I'm just finishing a local bumble bee survey/count... they are very endangered in Eastern Canada... 😟🐝

  • Paula,

    I looked into this here in the US. First, it is usually given to children. So none of the walk in med clinics had this vaccine.

    I called my primary doctor who doesn't stock it or will order it.

    I called the county department of health, who informed me that they required a prescription from my doctor to give it, due to it is a pediatric vaccine.

    Then they said it would be $45 USD. When I explained that this is given three times, they said I would be charged for each injection.

    Needless to say, it's not high on my list of things to do now.

    HOWEVER, I did ask my CLL doc about it and he said that if I wanted to get it, that it was fine.

    Jeff

  • Sorry you've had such problems getting the Hib vaccine, Jeff. My GP arranged for me to have it as soon as I asked, with no problems or comments about it being a pediatric vacc. I'm in England, and got it on the NHS - just one injection. No one said anything about needing three injections... I hope I haven't missed something here...

    Blood tests done later showed I'd had a "reasonable" response to the Hib vacc, so I guess the one injection did the job. Or would a booster or two have given me even better results? My blood test results for Pneumococcal antibodies were said to be "excellent", so that was even better. (I'd had both the Prevnar13 and Pneumovax 23).

    When I was given meningitis vaccs (for Meningococcal strains B and C) , I was told I would need a booster injection later, which I duly had. And tests done recently showed that I'd got good antibody responses to both those strains. And that was after my spleen had been removed.

    Anyway, I hear you when you say that getting vaccs is not high on your list of things to do, at the moment. There are always so many things to do, and it makes it so much more harder when we have to take the initiative for much of our health stuff ourselves...

    I hope you are keeping well these days...

    Best wishes,

    Paula

  • Paula,

    This is from Web MD:

    "How Many Doses of the Hib Vaccine Are Needed?

    Different vaccines have been licensed for use in the U.S. The vaccines are equally effective and one can be substituted for the other if the original vaccine the child received is not available. The number of doses that are required for full immunity -- either three or four -- depends on which vaccine is being used. For adults and older children who are at increased risk and have never been vaccinated, at least one dose of the vaccine is needed for protection."

    So I guess at least one is fine. 😃💉

    Jeff

  • Thanks Jeff, that's very helpful, and reassures me that it was OK to just have a single Hib vacc. (Well my blood tests afterwards said I'd had a "reasonable" antibody response to Hib, and that's the important thing).

    Paula

  • Paula,

    My responses to the Pneumovax was poor but to the Prevnar was good but I expected the Prevnar to be better.

    I won't give up on the Hib but they are throwing a lot of roadblocks at me.

    Jeff

  • So pleased to hear you had a good response to the Prevnar, Jeff, even though the Pneumovax response wasn't so good. It's more evidence that Prevnar is better than Pneumovax, so well worth having (even if someone's already had the Pneumovax).. I do hope that message is getting through to more folk....

    Glad to know you're not giving up on the Hib... I'm sorry about all the roadblocks being thrown at you... :-(

    Take care, especially as you try and shove all those roadblocks out the way :-)

    Paula

  • Prevnar was initially being approved for vaccinating children, but as more evidence of its effectiveness for adults is being recognised, official vaccination recommendations are being updated to recommend Prevnar for immune compromised people like us. I suspect Hib is following a similar path.

    I hope you don't regret your current priority list later, should you end up in hospital with pneumonia...

    Mind, I'm finding arranging my Prevnar and Hib shots hasn't been easy either. My GP is prepared to arrange them provided my specialist approves and I've been waiting on my extra busy specialist to respond for a few months now...

    Neil

  • Neil,

    Did you mean the Hib vaccine? You said Prevnar.

    Though that also was considered a pedi shot, I didn't have much difficulty finding that vaccine.

    Paula was discussing the Hib shot

    Jeff

  • Thanks for the correction. I've updated my reply accordingly. I'm waiting on approval for both...

  • Neil, I'm sorry it's taking so long for your specialist to respond to your GP re Prevnar and Hib shots. Both are definitely recommended for CLL patients, so I would have thought a quick answer of "Yes he can have them" would have been no problem - unless there are certain factors that might rule them out for you...

    I wonder if anyone knows of any factors that might mean those vaccs would not be advisable for some people?

    best wishes,

    Paula

  • I asked my doctor 3 weeks ago. He said he would get back to me if he felt it would do any good, but he hasn't as yet.

  • Hi Peggy, I'm sorry your doctor hasn't got back to you yet. I think it’s very hard for anyone to predict how well a CLL patient will respond to vaccinations. CLL is such a variable and complex illness, and our immune systems are extremely complicated. However, with pneumonia being such a serious illness, and the vaccinations being possible life-savers, I find it hard to understand doctors being reluctant to give them… especially when we ask for them…

    My GP said he didn’t think I’d respond well to any vaccines, but he was happy to give me the HIB vacc as soon as I asked, and he agreed to give me the Prevnar after checking it out. (All on the NHS). As it happened, I had extremely good responses.

    All these vaccines are recommended by leading CLL experts in the UK.. This is what Prof Chris Fegan (Consultant Haematologist at Cardiff University), said a couple of years ago:

    “…It is important that they (CLL patients) receive vaccinations against the common pneumonia causing bacteria - Pneumococcus and Haemophilus Influenzae B (Hib), and the vaccine against Meningococcal C. The annual flu jab is also important but the majority of patients with CLL will not mount an immune response against that particular strain of flu.”

    I also remember hearing a video where Dr Claire Dearden (Consultant haematogist at Royal Marsden Hospital, London) gives similar advice re vaccinations.

    So, I'd encourage you not to give up, Peggy... Maybe it's time to get back to your GP and follow this up?

    Best wishes,

    Paula

  • Thanks Paula. Will be asking for the HIB vaccination.

    Sue

  • My GP suggested I have a vaccination for pneumonia as soon as my CLL was diagnosed and gave it to me straight away. ( Victoria, Canada ) I was still like a deer frozen by oncoming car lights so had no idea I needed a vaccine. Very glad my GP was on this right away. However, not sure which one I got and will follow up with my doctor at my next appointment.

    Because I have four young grandchildren, and volunteered as a Reiki healer, I had the shingles vaccine as soon as it was available, and before my diagnosis of CLL. Just hope it works when needed. Do encourage people to get the vaccine when they meet the criteria as shingles can be a very serious disease. I am aware that the vaccine is not always effective, but if one can reduce symptoms, and take an antiviral, hopefully severe eye problems and horrible pain can be avoided. I had to pay $200 Canadian out of pocket at the time, but put it in perspective.

    Sandy Beaches

  • Hi Sandybeaches,

    Great that your GP gave you a pneumonia vacc as soon as your CLL was diagnosed. :-) Sounds like you have a very pro-active GP there! :-)

    However, as that was a few years ago and since you only had one vacc, it was most likely the Pneumovax 23. More recently the Prevnar13 vacc has been found to get better responses from CLL folk, and the recommendation is to have both Pneumovax and Prevnar (first the Prevnar, then Pneumovax at least 8 weeks later). And the Hib vacc as well.

    When you follow up on vaccs at your next appointment, I suggest you ask about having Prevnar and Hib, and also consider asking about the Meningococcal vaccs. All are listed on the chart in the link above, which is helpful to show to doctors, because the recommendations keep changing. It’s hard for docs – even the proactive ones, to keep up with everything.

    I hope the shingles vacc you had (before diagnosis) will continue to give you protection… As you say, shingles is one of the most painful and nasty diseases… And we can all watch out for the new “non-live” shingles vacc that is in the pipeline. I 'm a great believer in getting all the vaccinations we can. In my former life as a Community Nurse, my job included encouraging people to get the appropriate vaccinations.

    Best wishes,

    Paula

  • Thanks Paula for the information on vaccinations. Will talk to my doctor about them, and take in the chart for him to pursue.

    Sandy Beaches.

  • Remember NO SHINGLES VACCINE if it is a live vaccine. There is a new one in trials that is not live that hopefully will prove to be effective for CLLers.

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