SLE & Pneumococcal vaccine ?

[eekt]

Hi! My GP offered me a Pneumococcal vaccine. When I asked if it's live he said yes but NHS says otherwise:

nhs.uk/conditions/vaccinati...

Has anyone had an adverse reaction to it? 🍂 🍁 🍄🌻🐿xxx

[Paul_Howard Partner LUPUS UK]

Hi eekt ,

I believe that the information on the NHS website is correct and that the pneumococcal vaccine is not live. It is generally advised that people with lupus who are on immunosuppressant treatment should have this vaccine.

It may be best to ask a nurse - I've heard that they are generally more knowledgeable that GPs when it comes to vaccines because they regularly administer them.

[eekt in reply to Paul_Howard]

That's great Paul, thanks! I'll ask the nurse when I have my flu jab! 💐🎁 xxx

PS My GP did blush! 🤭

[Sara_A in reply to eekt]

It’s not a live vaccine and it’s offered to people who are immunosuppressed and u can have it at the same time as the flu vaccine too. Assuming they have some as there are ongoing national shortages!!

There are similar risks as with any vaccine u have, there’s always a risk of allergic reaction to vaccines and drugs but they are rare but obviously they have to tell u they can happen.

I had mine and was absolutely fine, all people with long term chronic illness are offered them and I’ve personally never heard of any major issues but like I say u can’t know who may react.

It’s a one off vaccine unless u have no spleen then u would get a booster dose after I think 5 yrs?

[eekt in reply to Sara_A]

Thanks Sara! I've not had a reaction to the flu jab so if I had them at the same time, I'd know the culprit! 😋 xxx

[vitalspark]

Had this a few times now, I think 2 yearly without any issues.

[eekt in reply to vitalspark]

Thanks vitalspark, that's good to know 👍 👍 👍

I came across an older thread on the same subject, started by the very wonderful Barnclown, with a full cross-section of reactions to it.

healthunlocked.com/lupusuk/...

I'm on Hydroxy only but prone to chest infections so it seems a better option than pneumonia 🤙🤙🤙

How's Rituximab working for you, are you still benefiting? 🥇Be well xxx

[EOLHPC in reply to eekt]

😍👋👋👋 👋 For what it’s worth:

👍👍👍👍Yes...when immunology clinic first took me on, immunologic blood panel results showed i had virtually no antibodies to most anything. Part of immunology screening is to test antibody response to vacc challenges, and i was given both the pneumococcus & afterwards, cause i’d made no antibodies, its alternative: the prevnar vacc. i responded negatively to both vacc (even though my SLE is active & treated as “moderate” lupus treated long term with daily hydroxy + myco + pred) i.e. i failed to respond by creating pneumonia antibodies, helped clarify the chracteristics of my version of Primary Immunodeficiency Disease (aka Antibody Deficiency Illness....aka hypogammaglobulinaemia....which developed years before treament with immunosuppressant meds)...the experts say this is a bone marrow dysfunction which explains why my version of luous, sjogrens etc is seroneg...and also explains why i’ve always been so susceptible to infections inc sepsis....hence am on longterm daily antibiotics & soon to start immunoglobulin G replacement therapy

I hope you get the vacc & make as many antibodies as poss💃💃💃💃

How are you? Hoping you’ll let us know how the appt went...😉 in the fullness of time 🤞🍀😘

[eekt in reply to EOLHPC]

🤩 my GP asked if ENT had suggested long-term antibiotics yesterday, but I'm still on the nasal merry-go-round...'no vestige of a beginning, no prospect of and end' 🌚 🌕 🌖 🌗 🌘 🌑 🌒 🌓 🌔

zsylvester.blogspot.com/200...

🌱🌿🌳🍏 🍎

Hope there was only good news from your nutritionist! 😘xxx

[EOLHPC in reply to eekt]

GREAT QUOTE, 😯 Hindered Settling👏👏👏👏

Seems to me your GP is on the ball: GOOD. Seems to me you truly need a Champion medic on your case....is this GP actually stepping up? In my experience they don’t ask questions like that one unless their ears are pricked up & they’re straining at the leash...perhaps you meet the criteria for referral to immunology. And perhaps you’ve already explored this avenue, so forgive me, buddy, but here are my thoughts:

I forgot to mention that @ our recent appt, my immunology chief was so concerned about ANYTHING compromising my respiratory system function even SLIGHTLY that the pneumonia breakingthrough his daily antibiotics getting my chronic rhinosinusitis flaring has made him refer me to a specialist NHS ENT colleague in london. This is after ENT clinics messing me around for decades. Yesterday the notice re a dec appt date with the ENT chap came through. Because my imm chief knows i have Antibody Deficiency Illness + chronic pockets of multisystem bacteria driven sepsis + have close to zero antibodies to both pneumococcus & haemophilus bugs, and make none in response to vaccination, i guess i qualify for this tertiary NHS ENT attention. SO, i think does your complex case.

So, do you have a history like mine of early onset complex persistence pattern infections, especially of the respiratory tract (which of course includes the sinuses)? If you do, i’d think you qualify for referral to immunology secondary care...or at least for primary care to run bone profile blood tests inc immunoglobulin levels, and also pneumococcus & haemophilus antibody levels...

😘🍀😘🍀😘🍀😘🍀😘🍀😘🍀😘

[Wendy39]

Hello. I have lupus and am on an immune suppressant but have had this vaccine. But I guess it’s best to ask as Paul says. Wendy

[tracie38]

Hi

I have the vaccine because I’ve had my spleen removed and have had no adverse effects from the vaccine, I struggle with everyday activities and am in constant pain, but my go hasn’t mentioned lupus, to me , I have a regular blood test every 3 months and my white count is always a cause for concern, so much so that a consultant at the hospital who is dealing with something else, told me that if I become ill I have to ring for an ambulance, he then asked what my go was doing about it I said nothing lol, xx

[eekt in reply to tracie38]

Thanks for sharing Tracie xxxx you're not alone in wading through the diagnostic quicksand and you'll find many posts here about uninformed GPs.

There are some blood tests Pros on the forum - you should start a post with your results and you'll find lots of support. 💪🤛

You could print Table 4 from the BSR Guideline and take it to your GP if you recognise yourself in the criteria (4 from 11 is regarded as SLE):

academic.oup.com/rheumatolo...

This is the sole UK guidance for doctors to assess, monitor and treat SLE.

There's the review form too that might be informative for your GP - I was diagnosed with SLE 3 years ago, and my GP said yesterday 'you won't be surprised to know I've never seen this before'...

sledai-2k.com/sledai2k.pdf

Please please don't wait for an ambulance! 😗xxx

[Poshcards]

Do please have it!! I had pneumonia a few years ago and was rushed into hospital twice, I thought I was going to die, could not breathe, do not want it again, so I had this vaccine two years ago after the event and had no adverse reactions at all xx

[eekt in reply to Poshcards]

Thanks Poshcards, very scary experiences, I will take your advice and wish you well xxx

[Hidden]

I'm wary of any vaccines these days. I became "seriously" ill after I had some jab. It may work well for the majority, but if you do not belong to that majority......then there's no way of knowing. If you are known to be "unlucky".......

[eekt in reply to Hidden]

Thanks autumnsonnet, I do have strange reactions to pharmaceuticals...but I was struggling with a chest infection in June even after a course of Amoxicillin, and pneumonia is my second worst fear after sepsis. I was 'unresponsive' with one chest infection and it's a deeply unpleasant place to be. I'm inclined to go for it and brace myself, and put an emergency plan in place...! 🏹😗xxx

[katidid]

My Rheumy says to always ask for the NON live version. In the US at least, just like the FLU vaccine there are different kinds. This is especially critical if you are on any immune suppressants.

[eekt in reply to katidid]

Thanks Katidid, love the name, reminded me of reading 'What Katy Did' when small - a pleasure completely forgotten!

Helpful posts here and the NHS website say the NHS uses a killed vaccination...my GP doesn't know his a*?e from his elbow...😅😜🤡 xxx

[EricaN]

No I absolutely refuse to be immunized. I choose life. Live or dead virus doesn't matter, they still put me in a flare and I land in the hospital. The CDC says NOT TO IMMUNIZE if you have an autoimmune disease. He is doing something he shouldn't by even asking you that. It's not legal in the states and shouldn't be there either.

[Paul_Howard Partner LUPUS UK in reply to EricaN]

Hi EricaN . May I ask where you heard that the CDC advises not to immunise patients with autoimmune disease (with the exception of the Hepatisis B vaccine)? Their guidelines on contraindications do not suggest this - cdc.gov/vaccines/hcp/acip-r...

In fact, it is generally recommended that people with lupus are vaccinated because they are more prone to infection and complications that result from them. The exception is in the case of 'live' vaccines with could pose a potential risk to someone who is immunocompromised, but the risks and benefits would need to be analysed for individual cases.

It is understandable if you avoid vaccines because you personally have experienced an adverse reaction but you need to understand that lupus presents differently in everyone and that reactions like yours are uncommon.