Hi everybody, it’s been a bit of a tough 10 days. Things have been going well but a week last Thursday I started getting flashes in my left eye and loads of floaters, optician referred me and went to hospital to have laser treatment on some retinal tears, because the NHS have difficulty managing appointments been back and forwards to hospital (16 miles away, not allowed to drive) waiting 5 hours at a time, then a day after my laser treatment had my Rituximab it’s been fun. This is the second time it’s happened but Doctors reckon treatments weaken the retina. Never mind.
Anyway less of my woes, sorry about the above I don’t get much chance to see anybody this time of year living in the Dales. Had to tell somebody.
So yesterday my wife went to her yearly Well Woman clinic and she was asked if she wanted the Pneumonia vaccine. Shocked she said yes, she is only just 54 and the only medical issue she has is PBC (Primary Biliary Colongitis) which is controlled. My wife asked the nurse “what about Nick”?to which she replied “it’s not showing up” the nurse is a personal friend of mine and I trust her but she didn’t know why I wasn’t down for it. I understand that people with certain conditions under the age of 65 are entitled to it but what about us who are CEV? I am 62. Hypothetical for me because just had Rituximab, anybody any clues? Nick.
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Sorry to hear you've been in the wars again Nick. As soon as I was diagnosed with vasculitis, my rheumatologist insisted that I had both my flu jab and pneumonia jab. But I was already over 65, and not on rituximab. So I looked this up and found that BMJ had following advice for Pneumococcal vaccination in autoimmune rheumatic diseases.
"The vaccination must be started at least 2–3 weeks before initiation of rituximab treatment, or 5–7 months after completion of treatment; if not possible, at least 6 months after the start and 4 weeks before the next course"
If I remember rightly, you have had to squeeze in your Covid jabs between rituximab infusions, so I'd get on to your rheumatologist to work out your plan of action, if you can. Your care has been a bit patchy hasn't it? As for the Dales, I remember a lovely family holiday walking there, but those days are over since vasculitis damaged my lungs. I would hate to be there now, unable to go for walks. I hope you can sort this out soon.
Hi Nick, I had mine at the start of covid, my specialist organised it as I believe some people with covid and weakened immune systems were getting both bacterial and viral pneumonia together from covid.
I believe it’s just a one off vaccine.
I do wonder why I wasn’t offered it years before as I’ve been on immune suppressants for 13 years now but good to have had it.
A couple of years prior to being diagnosed with vasculitis, I read Richard Bacon's story and paid for a pneumonia jab. In the interim my very fit son (probably caused because he knew better and didn't finish a course of antibiotics) got pneumonia and had to be blue lighted to hospital after misdiagnosis. Post diagnosis I am wondering if I should get another.
I recently learned that its effects begin to wane after 5 years. Mine was many years ago. I’ll make enquiries at my practice and return with their reaction!
Post code lottery. I am 61, on Benra and low dose pred and was given Flu, Pneumonia, latest Covid and first Shingrix by my GP practice. So sorry to hear about your struggles.
Thanks all for your support and advice, just for the record I went to have my eye checked yesterday to be told by a Dr your eye looks fine but I need to speak to the Surgeon (who I had an appointment with but told wasn’t available) who needs to operate in the theatre with a more powerful laser. I asked why if it’s all ok? The Dr who examined me said “she made the decision based on your photos before the laser treatment” so I asked why the visits last Tuesday and today if you had already decided, to which I was told and get this “you have had 2 x wasted journeys” considering I only had my Rituximab last week I had to walk 2 miles to catch a bus to Darlington to walk another mile to the hospital. My wife was able to pick me up at 1700 after work. So I set off at 10.30 for a 1pm appointment and got home at 1800 last night all for nothing. Absolutely incompetently shocking and not one person said sorry. I am having my operation Friday. Nick.
I get the feeling that this is the main issue with the NHS (and other large organisations); it is the administration and communication processes that cause everyone problems. Where someone has taken the trouble to sort them out everyone is happy but so often no one does or politics gets in the way, everyone feels it especially the "customer".
Hi eh66 It’s always the Customer that cops for it. I think that there are still a lot of good conscientious people in the NHS but they are getting fewer. The issue I think is that the systems they have in place worked very well when staff were conscientious and wanting to help but a lot of the staff now are not like that and sadly don’t care. To use a railwayism it’s like asking a 21 year old newly qualified Train Driver to drive a Steam Train.
Really sorry to hear you are having a hard time. The care you have received is unbelievable. I’m surprised you were able to walk that far especially after RTX and what wasted journeys. Makes me so cross for you .
Hope your operation goes well. Sending warm thoughts to you
I hope you get the required treatment for your eye soon. What a shambles. I’ve had two pneumonia vaccines. The first was requested by my respiratory doctor when I was first diagnosed with Bronchiectasis. I was on rituximab at the time. The second was when I first went to immunology before I started immunoglobulin infusions. I was in my fifties when I had the first one and early sixties when I had the second. Perhaps you could ask your vasculitis consultant about having it.
Thanks as always Mooka, I am seeing her in February so I can talk to her about it then. From what I understand on various NHS articles is that it should be at least 5 months after my treatment and I only had that last week so we have time. I am booked in for laser treatment in the theatre this time at 0730 Friday. Hope that’s an end to it. Nick.
is the Green Book chapter on pneumococcal immunisation and says:
In the UK, PPV23 has been recommended for risk groups since 1992 and for all people
aged 65 years and over since 2003. PPV23 had moderate short-term effectiveness of 41%
against IPD caused by the vaccine serotypes in adults aged 65 years and over during the
first two years after vaccination, with vaccine effectiveness being higher among healthy
individuals compared to those with underlying medical conditions (Djennad et al., 2019).
There is some evidence for PPV23 offering protection against non-bacteraemia
pneumococcal pneumonia (Diao et al., 2016).
The length of protection offered by PPV23 in risk groups and in older adults is variable and
serotype-dependent. Post-immunisation antibody levels usually begin to wane after about
five years but may decline more rapidly in asplenic patients and children with nephrotic
syndrome (Butler et al., 1993).
The rheumatologist advised me to have a booster after five years and the GP agreed so I had it again. You will need to plan it into your programme of infusions and treatment.
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