Flu shots and PMR: Asking the experts here... Its... - PMRGCAuk

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Flu shots and PMR

1Purplecrow profile image
22 Replies

Asking the experts here... Its flu shot time again, and I'm worried about the risk of getting the shot.

I'm tapering pred, currently 7- 6.5.

I think I'm sensitive to the tiny step reduction of steroid, but have continued PMRpros schedule in spite of some withdrawal issues.

Now I worry about the risk of a flare if I get the shot. Any words of advice? thanks. Jerri

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22 Replies
polkadotcom profile image
polkadotcom

You have reminded me that it's that time again! I've had my flu shot for more than 20 years - long before PMR - without any noticeable side effects and I think it is even more important since I've been taking steroids. Itis not a live vaccine, so it's ok and important for us to have one. The thought of 'flu plus all my other ailments now makes my blood run cold (well, what they've left me!).

1Purplecrow profile image
1Purplecrow in reply to polkadotcom

Agreed! Thanks

PMRpro profile image
PMRproAmbassador

First of all - remember you aren't reducing relentlessly to zero, you are reducing to the lowest dose that controls your symptoms AT THE MOMENT. I feel strange (for want of a better word) for the first few single days I take the new lower dose. Not PMR-flare ill, but definitely not 100%. This settles after 3 or 4 times and then I start to feel better on the low dose days than the higher dose days. I assume this is the form the steroid withdrawal is taking as I have to drop at 1mg at a time - I can't cut my pills.

I've had the flu jab the last 2 years without problems - didn't qualify in the UK despite everyone else in the family being at risk. Maybe stick where you are pred-wise until after the jab?

warthog profile image
warthog in reply to PMRpro

The Rheumatology department at my hospital has sent a notice to all patients regarding drugs. It says that if you are taking prednisolone it is very important that you havethe annual flu jab. I have always had it, with no problems.

1Purplecrow profile image
1Purplecrow in reply to warthog

Thank you for your reply.

1Purplecrow profile image
1Purplecrow in reply to PMRpro

Thanks. Will have it

Asbeck profile image
Asbeck

Most people on here will tell you to get the shot. (Maybe not the nose spray.) The shot is a dead virus. However, I got my first flu shot in about 53 years and promptly developed GCA and PMR. I think that it triggered my antibodies to go crazy. I'll never know. Now it might give them something to do other than eating at the arteries. You definitely don't want the flu. Good luck.

Angela123 profile image
Angela123 in reply to Asbeck

Hi Asbeck. I got my PMR a few weeks after my first ever flu jab plus the anti-pneumonia jab. I had these because I was on methotrexate for Rheumatoid Arthritis, another auto immune disease. Do you still get the flu jab despite what you think? Angela

Asbeck profile image
Asbeck in reply to Angela123

Hi Angela123! I haven't decided yet. I got the flu jab in March of 2013. So I've missed it by 6 months so far this year. My Rheumy seems to be worried about my immunity, and I'm older now and in a position to travel more (as on an air plane). I see her in October and will ask her this specific question. The flu on Prednisone (and the after effects of methotrexate) would not be good. I do know someone was diagnosed with having had a latent MS gene, got the flu jab and developed MS in his 20s. So it happens. I also know someone who got somewhat paralyzed after a flu jab and that this can be a rare side effect of the jab. Many people in our University of Miami Hospital and Medical Center wear a mask because they refuse to get the jab, and therefore the hospital requires it of them (so they won't have the beginnings of the flu and unknowingly infect the patients). I wonder what they know that we don't know. However in 2013 a neurologist friend told me to get the flu shot. So I did. The rest is history. If I get one I'll write you back with the results. I'm really not anxious to do it.

Angela123 profile image
Angela123 in reply to Asbeck

Many thanks for your reply. I expect I will probably get the jab again when the time comes as the damage is now done (and hope nothing else happens). I know flu can be nasty as I had it once but I was much younger then. Now my health is not great I feel I should have it. I have not mentioned to my doctor that the PMR came on after my 2 jabs as I'm sure he will say it was just a coincidence. I'm interested to know what you decide. All the best. Angela.

Asbeck profile image
Asbeck in reply to Angela123

And thank YOU. I'll let you know. I might get it if I decide to go on a plane. Or I might wear a mask on the plan and scare everybody. I might have to go on a plane in mid October. Please write again after you get the jab. And tell your doctor about the correlation between the jabs and the disease. You might be surprised. I'm going to tell mine. I know that there are some live virus vaccinations which we should not get. All the best to you as well.

1Purplecrow profile image
1Purplecrow

Thank you.

1Purplecrow profile image
1Purplecrow

Thank you.

tauntonsue profile image
tauntonsue

I always take the Ainsworth Homeopathic Anti Cold & Flu, it's formulated on each years expected flu strain much like the flu jab. Not expensive and you can buy on-line or by phone from Ainsworths, you have to take x3 over 24 hours nothing to eat or drink 15 mins either side of taking it. Do this every two weeks from Oct - Apr.

1Purplecrow profile image
1Purplecrow

Thanks.

mk14 profile image
mk14 in reply to 1Purplecrow

Not related to your post, but I love your purple crow logo. Is it embroidered?

suzieh profile image
suzieh

I have had flu jabs for the last 2 years with no problems or difference in Pmr symptoms. Will be having another soon - certainly don't want flu!!!

Polywotsit profile image
PolywotsitPMRGCAuk team member

nhs.uk/Conditions/vaccinati...

The NHS website categorically states that people with long-term conditions on steroid medication should have the flu jab, and in England and Wales they qualify for the flu jab free. If you are in any doubt about it, discuss it with the doctor.

bowler profile image
bowler in reply to Polywotsit

I really don't know what to do for the best re the flu injection. I have always had it, however these past 2 years after the jab, my ESR went up, I had horendous headaches, [ I have GCA ] and had to increase my steroids, which set me back, I also got a bad chest infection, so antibiotics required. I am at the moment on 35mgs of Pred. due to another flare of GCA I just reached 9mgs. on a slow taper, and then it all came back [ GCA ]

Perhaps as I'm on a high dose of Pred. that will guard me if I have the flu jab now? I really don't know what to do.

1Purplecrow profile image
1Purplecrow in reply to bowler

Hi Bowler, I have PMR, on 6.0 pred. I got the flu injection almost 2 weeks ago, and didn't even notice i got it.

Relief, I didn't experience even a headache. Think the prednisone helped with any potential reaction??

Good luck to you. Jerri

Bobbikins profile image
Bobbikins

Read up about the class actions in the US...people who developed auto immune diseases as a result of having a flu jab. My PMR kicked in days after a flu jab and I think it’s very likely the cause.

Rimmy profile image
Rimmy

I live in OZ and they dish the flu shots out for free for several categories of people including for over 65's. From last year following concerns about worse flu seasons in previous years they introduced a special formulation for seniors in which 'the vaccine contains four times the amount of antigen, or active ingredient, for each of the three strains in the vaccine, compared with regular influenza vaccines. '

They said - 'the new trivalent (three strain) vaccines work in over 65s by generating a strong immune response and are more effective for this age group in protecting against influenza.'

I had this 'special' shot last year with no ill response and certainly no flus -and luckily no colds either since I developed PMR/GCA a little over 2 years ago. There is quite a big ant-vax crowd here and to some extent I can understand their concerns when we hear 'apparent' examples of people becoming unwell following shots - which my own granddaughter did as a baby - ending up in hospital. However, this is not the norm and we must also accept the fact that these vaccines are designed not for the unique chemistry of each of us but rather to have a broad demographic impact and shift us 'all' into 'prevention' (rather than 'cure') zones. Unfortunately there will be a few people - but very few relatively - who may have some reaction - but given the odds even if it was a lottery ticket I would 'buy one' as for any of us on Pred and at our 'age' getting a bad flu could be really terrible.

It is interesting also I did have a shocking flu a couple of years before my diagnosis (I had no flu shot that year) with PMR/GCA - and I was very ill indeed for 6 weeks - I have actually wondered if THIS was when it all began for me ... so we might ask if flu itself (rather than the vax) could be another 'trigger' .... ?

Best wishes

Rimmy

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