Hello,
I’ve been (relatively)recently diagnosed with Monoclonal gammopathy of unknown significance (MGUS).
I’ve seen the post on here about how those with Monoclonal gammopathy of unknown significance (MGUS) can get the covid vaccine for free on the NHS (thank you for that information!) [in Spring 24, the same information is in the Table 3 or Table 4]. I can’t include links to the post, but it has the title “Are people with Monoclonal gammopathy of unknown significance (MGUS) entitled to Autumn 22 Covid Booster” on this forum
What I’m less clear on is about if the same effect is true for the annual flu vaccine. Now, while I am fortunate that my work will pay for it (long may that continue), I’m struggling to determine if Monoclonal gammopathy of unknown significance (MGUS) means that a flu vaccine is free to people like me.
Has that been discussed and I’ve missed the information on this? Or does this “depend”? Or something else?
Thanks for your comment and a really good question to ask as I’m sure others will be wondering.
Here’s our page on staying safe with blood cancer, which gives some more information on vaccinations: Blood cancer and staying safe | Blood Cancer UK As you probably know, Monoclonal gammopathy of unknown significance (MGUS) isn’t a blood cancer but you may well be recommended the same vaccinations to be safe.
Just to highlight that having Monoclonal gammopathy of unknown significance (MGUS) doesn’t automatically mean you are eligible for a free covid vaccination this year. I haven’t been able to find the post you reference (will keep looking!) but I will try and check the information that’s on here as it may be that it has changed since that post was written. Thank you for letting us know about this.
In terms of whether you can get a flu vaccine on the NHS, it’s not as straightforward as you may think and does depend on circumstance and levels of risk. Here’s the NHS site information: Flu vaccine - NHS (www.nhs.uk) Because Monoclonal gammopathy of unknown significance (MGUS) doesn’t necessarily put you in the at risk category, it’s not an automatic reason to be eligible. You will need to check with your hospital team because they know your individual case. This is true for others reading too because there may well be other reasons why people are eligible so we would always encourage a discussion with your treatment team.
It sounds as if you are feeling sorted either way because work will pay for it, but you can still have a chat with your team to see what they say as it may reassure you. A conversation about vaccinations in general with your team is very useful at this time of year.
Because you’ve been relatively recently diagnosed, I thought I’d also share our booklet on Monoclonal gammopathy of unknown significance (MGUS) in case you haven’t seen it yet as it has some more information you may find useful: Monoclonal gammopathy of undetermined significance (MGUS) | Blood Cancer UK Shop You can order a printed copy or download it.
Hi @Somethingrandom a great big welcome to our forum and a very good question and I see that @Ali_BloodCancerUK has answered it far better that I ever could.
I really look forward to hearing more about you so please do keep posting.
Really look after yourself
Regarding the post from 2022, this is the advice I used previously. As I’m not permitted to add links to the forum, here are screenshot, and a link where I’ve added spaces so it bypasses the checks but when removed, can find the source material:
hxxps : // forum. blood cancer. org. uk /t/are-people-with-Monoclonal gammopathy of unknown significance (MGUS)-entitled-to-autumn-22-covid-booster/6258/3
And when I look in the green book for Autumn 2024, I see that same phrase being used. Unless I’m reading those wrong, Monoclonal gammopathy of unknown significance (MGUS) is valid. Or am I reading it wrong? Attached is a screenshot of the green book as I can’t post links to it
My apologies @Somethingrandom - this has taken some time to get back to you. The Green Book does not state Monoclonal gammopathy of unknown significance (MGUS) but ‘Plasma Cell Dyscrasias’ which would need documenting by a Haematologists or GP regarding eligibility. May I ask whether you were able to access the Spring COVID vaccine?
Our Monoclonal gammopathy of unknown significance (MGUS) booklet on Page 12 reads: MGUS-monoclonal-gammopathy-of-undetermined-significance-Blood-Cancer-UK-MGUS-0423-1.pdf (shopify.com)
Am I at higher risk from covid-19? Recent research suggests that having Monoclonal gammopathy of unknown significance (MGUS) does not increase your risk of getting seriously ill from covid-19. So people with Monoclonal gammopathy of unknown significance (MGUS) are not recommended to take extra precautions, unless they are in a high risk group for another reason
However, if a GP or Haematologist feel that individuals are at greater risk they can document this in a letter to take to the vaccine centres.
My colleagues and I are still looking into this further for you and will get back to you as soon as possible.
Hello, and sorry for the delay. For Spring 2024, I was insistent enough at the appointment that the person just gave me it as I could point to the previous post and then the green book to say that "Monoclonal gammopathy of unknown significance (MGUS) is defined as “Plasma Cell Dyscrasias” '.
Now, if that is wrong, then that’s something I was certainly unaware of. I’m trying to protect myself and my family as I am the main income source for us, and my wife has asthma, so I don’t want to unduly catch it from being in the office with lots of people who use public transport.
to be clear, when I look at scientific papers relating to this, I see that Monoclonal gammopathy of unknown significance (MGUS) is a ‘Plasma Cell Dyscrasias’ - e.g. see article PMC5804349 on the NIH[.].gov website
To try and help a bit further, the Green Book does state this is not an exhaustive list, so it may be beneficial if your healthcare team who looks after your Monoclonal gammopathy of unknown significance (MGUS) can perhaps write a letter to state they would recommend the COVID vaccine.
Unfortunately, the Green Book does not specifically have a section on Monoclonal gammopathy of unknown significance (MGUS), but does mention plasma cell dyscrasias which is an umbrella term for diseases caused by abnormal plasma cells, which Monoclonal gammopathy of unknown significance (MGUS) falls into, therefore to help access vaccines, extra support such as a letter from the GP or Haematology team may be useful.
As written in the Green Book:
'Criteria for additional doses of COVID-19 vaccine in those aged 12 years and above;
Individuals with primary or acquired immunodeficiency states at the time of vaccination due to conditions including:
individuals under follow up for a chronic lymphoproliferative disorders including
haematological malignancies such as indolent lymphoma, chronic lymphoid leukaemia,
myeloma, Waldenstrom’s macroglobulinemia and other plasma cell dyscrasias (Note: this list is
not exhaustive)’
Hope this is helpful
Emma (Support Services Nurse)
