How Difficult should this Be?: Am really fed up... - PMRGCAuk


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How Difficult should this Be?

Carol-mc profile image

Am really fed up with this situation. I live in Fife, am 71 and have PMR. I phoned our surgery a week ago to ask which flu vaccine I would get as my immune system is compromised blah blah, the receptionist swerved the question by telling me it would be up to the nurse, so made appointment to have this done yesterday. My OH had got the Fluad vaccine (for over 75’s) as he is 78, but the nurse didn’t know what to do about me!!! It was agreed the doctor would phone me today, received a call from the surgery to say doctor not calling today as “she doesn’t have the information she needs” and will phone tomorrow.

Have read on-line that “at risk” groups, including long-term steroid use, should get the ‘new’ vaccine, but I doubt she will agree to this, they just haven’t a clue. In Scotland they are going by a date on the calendar instead of your health condition, so that 65-75yr olds have to take the older vaccine which is supposed to be less effective. Maybe a pharmacy would do it, don’t mind paying, just feel medical practices should be more clued-up. Sorry for rant!

24 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi Carol,

according to nhs site you should have this vaccine -

“an adjuvanted trivalent injected vaccine. This is for people aged 65 and over as it has been shown to be more effective in this age group”.

Plus you should be a priority as you have autoimmune problems and are on steroids.

See attached -

However, as you are in Scotland, the rules may differ.

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Not to mention that Fife is skint...

Carol-mc profile image
Carol-mc in reply to PMRpro

You’re not wrong there!

PMRpro profile image
PMRproAmbassador in reply to Carol-mc

My daughter is in Rosyth. And a nurse...

Hidden profile image
Hidden in reply to PMRpro

I also live in Fife, I'm 64, and got the injection 10 days ago. It was one of those special 'clinics' for older types to get injections. I missed the first-thing rush, thankfully, and was told that there were three groups - different vaccines for different age groups. I haven't a clue what I got but I had a red spot on my form. Others had a black spot (!), and there was another colour I can't remember. I just take it as it comes.

Telian profile image
Telian in reply to Hidden

Red spot sounds like urgent so think you had the best one......

PMRpro profile image
PMRproAmbassador in reply to Telian

Black was always death... Don't fancy that one!!!!

Telian profile image
Telian in reply to PMRpro


piglette profile image
piglette in reply to DorsetLady

The NHS site is not being totally straight with the truth. They cocked up earlier in the year with licensing so we are now in a real mess. We should all have the quadrivalent but it looks like that is not on this year. They are trying to get over it by offering the trivalent but are having to limit it to the 65s and over plus various vulnerable people. In fact at the current rate our surgeries won’t be able to get any vaccine until the flu season is over.

Carol-mc profile image
Carol-mc in reply to piglette

Yes, it all seems a big mess, although apparently you can go to some of the pharmacies for the vaccine, they seem to have got supplies no problem!?!

Looking forward to seeing what doctor comes up with tomorrow.

Slowdown profile image
Slowdown in reply to piglette

Thank you, piglette, for the clear advice, I found the NHS site confusing about exactly which 'injected vaccine' for whom so now you've cleared that up I'll opt for quadrivalent (I have been offered the choice, unusually...but told to ask the nurse).

piglette profile image
piglette in reply to Slowdown

I just think the whole thing is in chaos. Goodness knows why, it is not exactly a surprise winter is coming and flu may be on the way, it happens every year.

Carol-mc profile image
Carol-mc in reply to DorsetLady

Thankyou, that’s what I thought.

Will see what doctor says tomorrow when she phones!

AgedCrone profile image
AgedCrone in reply to Carol-mc

Did you ever get an answer.

On the FLUAD (adjuvanted) website it says it should not be given if on some Biologics ...should ask doctor & he may say to stop them

Which is impossible if you are on 6 month infusions.

Carol-mc profile image
Carol-mc in reply to AgedCrone

Yes, the doctor phoned and told me She couldn’t give me the new vaccine as I am under 75, but made a point of saying that next year we will get it! She agreed that PMR was a chronic disease but wouldn’t budge when it came to the flu vaccine. I am now booked to have the one which is given to 65 to 75’s here in Scotland. Tried the private sector and they can’t get hold of the new one either, nor can the pharmacies, they have the Quad one. Not happy, but don’t know what else to do, just thinking some protection better than none!

piglette profile image
piglette in reply to Carol-mc

I think it is being given out in limited amounts to everyone. Should I say in VERY limited amounts.

AgedCrone profile image
AgedCrone in reply to Carol-mc

I would not be too disappointed.....the way I see it nobody knows the outcome. Most of us didn't have any Flu vaccine for years,& we are still here - a bit bruised but OK.

I would rather forego the vaccine & get my infusion. I know it works,& I had a flu vaccine & Flu this I'm just pleased to know what my Biologics team have decided the way to go.

Carol-mc profile image
Carol-mc in reply to AgedCrone

That’s true, we managed for years with no vaccine, and did ok. Have noticed the pred has made me quite anxious these days, I was always a “born worrier” as my family would say! Did your Biologics team say you shouldn’t have the Fluad vaccine? Don’t get any infusions so don’t know about that.

AgedCrone profile image
AgedCrone in reply to Carol-mc

Yes....I have RA & get infusions every 6 months. I had the flu jab last year 2017.......then had Flu in January 2018. I think....but don't know .......that this year's vaccine is boosting the area of my immune system that my infusions are trying to damp I'm not having a flu jab at all this year.

I don't quite know how I got on this site....I guess someone crossed over to NRAS...& here I am!

I can't take nearly sent me round the bend.....I think it's a terrible drug......I was only on it for less than a just masked my symptoms ...but really messed with my head.

Carol-mc profile image
Carol-mc in reply to AgedCrone

Ah, can understand your reluctance to chance another flu jag, makes sense to be guided by your team. pred can certainly mess with your head, I had one phycotic episode in a Supermarket when I thought everyone was on steroids, it was very scary, I couldn’t get out fast enough although I did realise something was wrong with me! Also had a lot of ‘brain fog’ although now I have tapered to 8.5mg that has more or less gone. The pred has helped me a lot, no pain now, but hate the side-effects!

Take Care!

DorsetLady is 100% correct. Your autoimmune disease and being on Prednisone therapy puts you in the high at risk group. I would certainly not take no for an answer. I am 68 and have gotten the higher dose flu injection for the last three years.

I am of those who got the H1N1 in 2009 and was in the hospital for 3 months. In a medically induced coma for 6 weeks. Long story. But by all medical brains, I should not be alive.

My best to you, and get that shot!

Telian profile image
Telian in reply to CRW-68

How awful for you, pleased you made a full recovery!

Hidden profile image


I had my flu jab last Tuesday. Seemingly in Scotland if you are under 75 you get the normal vaccine, over 75 you get the "Super Duper" vaccine (as my GP called it. Hope that helps.

I got mine yesterday from the pharmacy as my GP surgery is now not getting stocks in until 1st November - it's been delay after delay due to this national shortage and I didn't want to be unlucky.

There are three vaccines one for over 75s - one for under 60s and the rest, which I fall into. Interesting you say the Fluad is for over 75s yet that's what I was given and I'm 70!

You shouldn't have to pay but I don't know how they do things in Scotland but I wouldn't wait for the GPs, we're going deeper into the season now and it feels too risky for me - if you can get it at a Pharmacy go for it.

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