Spring COVID vaccination

[Hedgehogfriend]

Hi all, I was told when I was diagnosed with PMR last year that the condition would mean I was immuno-suppressed. Consequently I thought I would be entitled to a free spring COVID jab which is being widely advertised now for over-75s (not me yet) and people with weakened immune systems (like me, I thought) The NHS has invited me for a free jab but advised me to check my eligibility. Prednisolone is listed as a medicines which weakens the immune system but only at the higher doses. At 5mg it appears that I do not qualify. Can anyone advise - is it the PMR which weakens my immunity or the steroids I take to treat the condition? Complicated or what!! I want a spring COVID jab but don't want to pay unless I really have to.

[DorsetLady PMRGCAuk volunteer]

It’s the steroids that suppress your immune system…. and you may not be on a high enough dose for the powers to be to deem you eligible.

In a recent post, someone was told this -

Apparently, having been on 15mg initially, for at least 4 weeks was not high enough.

So suggest you check with whoever is administering the vaccine, whether than be GP or local hub… they’d need to check the Green Book - Chap 14a… which states 20mg …

[Hedgehogfriend in reply to DorsetLady]

Thank you, as prompt and helpful as ever. Just getting the vaccination invite - with hidden strings attached - and then seeing repeated adverts is winding me up. Helpful to know it's the steroids not the PMR which suppress immunity. So much to learn about this condition. I suppose I'm lucky to be down to lower doses! Thanks again for your help x

[PMRpro Ambassador in reply to Hedgehogfriend]

You can turn up and act all innocent and whoever you see may let you have it - seems to be little rhyme or reason.

[herdysheep in reply to PMRpro]

That's what I was going to say - not at GP surgery but at a hub. Has worked for others in your position.

[OldPenny in reply to PMRpro]

That's me next Monday 😉

[PMRpro Ambassador]

The PMR is a sign that your immune system is deranged (as I like to put it) but not necessarily that it is unable to protect you from infection. The steroids, on the other hand, suppress your immune system to reduce the effects of the derangement - but also probably suppress its ability to respond to infections. I and quite a few others have never found we get any more infections on pred than we did not on pred.

Here in Italy, I now only get one Covid jab a year which is standard. I have been on pred all the time through Covid, the first 3 years at well over 10mg/day, and so far have not knowingly had Covid. I try to avoid crowded situations and carry a mask which I use of there are lots of coughing spluttering people around. Has worked for me.

[Carrollee]

Hi

I was sent an invite but asked to check if I was actually eligible by clicking on a link . It took some wading through but eventually found the bit that said “on prednisolone alone you are only entitled if on 10mg or above” 🤷🏼‍♀️

[Hedgehogfriend]

Thank you, same for me. And I reached same conclusion. I'll probably pay to get a jab as it's unsettled me and we're travelling to Wales and Portugal this year. Great to have holidays to.look forward to.

[Pixix in reply to Hedgehogfriend]

I didn’t know you can pay & get the Covid vaccine. I’m going to try & get it, but I’m under 75 & on 2mg, not not entitled to it. I’m happy to pay, though…I didn’t know you could! How do you achieve it, please?? Whe I Google it says onky available to people in eligible groups & as a few vaccination.

[DorsetLady PMRGCAuk volunteer in reply to Pixix]

Have a look at this -

pharmadoctor.co.uk/patient/...

[Hedgehogfriend in reply to DorsetLady]

Thank you, that's helpful x

[Hedgehogfriend in reply to Pixix]

The jabs are only just becoming available to buy. £45 I think. The link sent by Dorsetlady is really helpful. Not all pharmacies are offering it yet so might be worth waiting a while until the system gets up and running.

[Pixix in reply to Hedgehogfriend]

OK! Thanks. The gov web site I read said it wasn’t, so good to hear. I should be able to get it anyway, as I suffer from Polymyalgia Rheumatica, Fibromyalgia, Raynauds Syndrome, Osteoarthritis, Hypermobility, Essential Tremor, Vertigo, Trochanteric Bursitis, Haemangioma - spinal, Sciatica, Orthostatic Hypertension, Blepharitis & macular Degeneration! I will go along with that list & my prescription & see which pharmacist I get this time!! Will look at the link, thanks DorsetLady! S x

[DorsetLady PMRGCAuk volunteer in reply to Pixix]

Would have thought you would quality for many reasons.. have also replied further down re invitation…

[Pixix in reply to DorsetLady]

Yes, I agree, replied below…thanks for your support! S x

[PMRpro Ambassador in reply to Pixix]

You have a whole host of concommitant diagnoses - some of which may contribute to your vulnerability, You can only ask - firmly!

[Pixix in reply to PMRpro]

Absolutely, & I will turn up with my list & prescription list & see what happens!! Fingers crossed! When I last asked my Dr I was on 6mg, & he said that weakened immune system with regards to steroids intake is 10mg & nobody below that is entitled to it. In fairness, the surgery only get given the quantity that matches the profile, so if the surgery give the vaccine to people who aren’t entitled then somebody who is entitled doesn’t get it! He said they can’t just order more. Another lottery! S xx

[DorsetLady PMRGCAuk volunteer in reply to Pixix]

If you aren’t entitled to it, then the NHS shouldn’t be sending out invitations… the letter has your details in it, so if your records aren’t up to date then someone isn’t doing their job correctly.

[Pixix in reply to DorsetLady]

The same invite has gone to all of us who were on high levels of pred at the time of the pandemic. They haven’t updated that register…but…The invite says you may no longer be immuno suppressed & it asks you to choose from 3 options…1 immuno suppressed (which is 10mg & over), 2 don’t know if I’m immuno suppressed or not, & 3) I am no longer immuno suppressed (which applies to all those under 10mg). They are relying on people to be honest. I was brought up that way, & can’t lie!! I’m seeking the vaccine, as you say, for all my other medical issues, plus the fact that I was immune suppressed before I was diagnosed with PMR. But these appointments are quick..they don’t have time for lengthy discussion & reading medical notes! Last time the guy said no, I wasn’t eligible, but then I showed him the list of my other medical complaints & he said OK. But I’m not good at ‘pushy’! Paying looks easier, but we may go away early May & I’d rather be covered, than not!!

[Pixix in reply to PMRpro]

I know. I’m just got good at pushy & get fedup with so much medical stuff! I fell off the rockery in a dizzy fit of orthostatic hypotension, & dislocated my ankle, exacerbated trochanteric bursitis & sciantica, bruised my butt, bashed my shoulders & hit my head! That’s my afternoon’s activity! I planted out 25 plants yesterday, & another 11 today…then David did the last 3 after spotting me on the ground & bringing out anklevstrapping gear…now I just need a rubber ring!! Tbh, I think, by immuno suppressed, the UK Govt means chemo drugs, RA drugs, diseases like multiple myeloma. S xx

[S4ndy]

I've been invited along. I've been on prednisolone since 2016. Currently on 5mg. I have had every jab offered so far so will probably turn up for this one too. I have a lovely moon face so it's pretty obvious to medics I take steroids. No one has ever questioned how much! Just make the appointment and turn up is my advice.