To vaccinate or not to vaccinate?: Grateful to know... - PMRGCAuk


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To vaccinate or not to vaccinate?

Megams profile image

Grateful to know if others have had the flu vaccination to get them through the winter?

Here in NZ it is autumn and cooling down - we are not far away from May so temps will be dropping.

Am 2.5 months on steroids for my PMR and wonder what others think about our immune systems being a little more fragile than usual from the rounds of virus's that are starting to circulate at this time of the year?

Kindest regards to you all once more.

30 Replies

Hi Megams

I am in my 5th year with PMR. Currently on a very slow reduction of Pred & am at 4mgs per day. So far, so good!

I have had the flu jab three times since developing PMR. Each time I have been under the weather following it. Twice quite mildly, once a good deal worse. This winter I decided not to have the jab and was fine. Of course I cannot guarantee that it was the jab which made me unwell - it could be coincidence. And, no doubt I would have felt pretty rotten if I had actually caught flu.

I reckon it's a judgement call you can only make for yourself based on your own feelings and experience. Personally I don't think I'll be having it again. Despite 5 years of pred I don't seem to catch many bugs doing the rounds so perhaps I'm just lucky that way.

Good luck whatever you decide. Hope you breeze through the NZ winter in good health!

Megams profile image
Megams in reply to mollymandy

Hi there MollyMandy

Thank you very much for your response and appreciate knowing your experience.

After reading your response and that of others, I am going to err on the side of caution and go into semi isolation as our weather temps start to drop for the time being.

I have developed another cold like virus this weekend - second in a month.

Told my husband this morning that we will need to hire a staff person to cover me for Sunday's as we have 7 day retail business.

This was amazingly freeing for me to actually tell him this.

I am sensitive to a lot of meds and one immunization I had last year (tetanus booster) fatigued me no end as part of my spiral health wise.

My kindest regards in the meantime and thank you once again.

PMRpro profile image

I've had the flu jab since I've lived in Italy - I wasn't considered at risk when I lived in the UK despite my husband and daughter having serious lung issues which should mean I got a shot. I have never felt ill after, not even a sore arm.

My husband has had his flu jab every year except 18 months ago - and in February last year he caught flu for the first time which kept him in bed for a week, and I mean "kept him in bed"! It progressed to pneumonia and it took months to clear it up. He won't be forgetting again!

The primary question you need to ask though is whether this vaccine for this season is the one that hasn't protected to a high level in the northern hemisphere this winter and whether it will actually have much degree of protection.

But in general it is recommended we have our flu jabs unless there is a good reason not to. I think what is more probable than being more likely to catch viruses is that we may not be able to fight them off as well once we have them. My daughter is a paramedic and she says it was clear to them that there were far more very poorly people with chest infections this winter than normal. Although the flu shot in the UK this winter didn't protect against the main flu virus, it did protect against others and I can only imagine you are more likely to get a vaccine that has been tweaked since there has been more time.

Megams profile image
Megams in reply to PMRpro

Hi there PMRpro - great hearing your response and the key component here is contained in your 3rd paragraph of finding out if this present vaccine available in NZ is going to protect "to a high level" this winter as have read somewhere (think one of your responses to another similar question on flu vaccine) and else where the batch made in UK did not protect folk fully/adequately anyway?!

My memory isn't fantastic in remembering finer points these days but sure I recall this info?

Also, I have never quite got my head around the fact that these vaccines contain thimiserol, a substance that was once used as a preservative in contact lens solutions and gave me grief when I was a wearer.

Should the drug companies consider removing these toxic preservatives then I will consider another flu jab as I do take on board the severity and consequences of lung issues having succumbed to pneumonia on numerous occasions in the past.

I will isolate this winter at home as I have done in the past, plenty to keep me busy and have some peace of mind.

I echo the comments of your daughter too as a paramedic.

I hope your husband has vastly improved and that the weather in Italy is lovely and warm as usual.

Kindest regards and sincere appreciation to you once more.

I wouldn't take the risk of not having the jab. It has never affected me adversely, though this year I did catch the flu mutation that the vaccination failed to prevent. However, it must have given some protection because it was a mild dose of flu. A really acute dose of flu is not to be contemplated.

Megams profile image
Megams in reply to Annodomini

Hi there Annodomini

Thank you for your input in which I take on board.

How unfortunate that you caught a flu mutation but good to know that the "flu jab" did afford some protection.

I have had "flu jab" in the past will little ill effect, however not too sure how my system would react as had a reaction to a tetanus booster last year which was just one response to a number of others where meds were concerned.

I did experience a dreadful flu in the 1980's - fortunately I have never experienced anything like it since, however in saying that, my memory is still vivid from that occasion so want to make sure I do everything possible to stay as well as possible whilst trying to heal from this PMR.

My kindest regards to you in the meantime and thank you very much.

My PMR is thought to have been triggered by the first time I had the flu vaccine. Saying that I have still had it for the last 3 years. The reason being I work on the front line of thee NHS and am more at risk of being exposed to it. My Rheumy that I had at the start said, if you don't have the vaccine and get flu, it will cause a flare in your PMR. I have a few days of increased stiffness then it settles again.

I should point out when I say they think my PMR was triggered by the vaccine, I don't mean the "dead virus", but the additives used to help deliver the vaccine. I've had the flu once many ears ago and was bedridden for nearly two weeks, followed by pneumonia, never again.

Megams profile image
Megams in reply to Maureengibson

Hi there Runrig - thank you very much for your comments, most appreciated.

I admire your ability to continue working frontline within the NHS and understand the need for you to have the vaccine.

I also understand about the additives contained within the "flu vaccine" and it continues to surprise me that the drug companies have not found an alternative "effective delivery system" by now, especially to support those of us with weakened immune systems and the added discomfort detracting from our "quality of life" for those of us affected when added to the vaccine.

Of course there is no money in finding a more natural alternative I would suggest - sticking my neck out here no doubt.

I have relinquished my Chaplaincy role at our local hospital since my diagnosis of PMR - a job I loved but will give my body a chance to heal in the meantime.

As I have a touch of a cold virus presently (2nd in a month) decided to attack on all fronts with rest, my usual chicken or beef broth and supplements conducive to the Hydrocortisone which I had started reducing early April but back to standard dose I started in February 2015.

My kindest regards to you once more and thank you again.

Judigardener profile image
Judigardener in reply to Megams

Hello Megams

I too had to give up my job last year as Lead Chaplain because of the PMR. I needed to know that when I went to bed I could stay there and not get called out. I too loved my job but it became untenable expecting my team to cover for me.

I have a private counselling practice and manage to work a bit doing that. Here's to our recovery.

Megams profile image
Megams in reply to Judigardener

Hi Judigardener

How lovely to communicate to another fellow Chaplaincy person and can certainly understand the reasoning behind needing to leave your field with your PMR issues.

It is indeed "to our recovery" in the meantime and allow our bodies time to heal, patience being a virtue I need to heed a little more.

Please keep in touch, not sure how as I am fairly new to this site and live in Auckland NZ.

Kindest regards

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi Megams,

Have been on Pred for three years, and have had vaccination each winter, plus for the previous two years when GCA was undiagnosed, but fell into the category of carer for my chronically ill husband. No ill effects afterwards, so I would personally say go for it. We have enough problems without fighting the flu as well!

My daughter sent pictures this week of snow on Mount Hutt (taken from her garden near Methven), so winter woollies on! Take care. DL

Megams profile image
Megams in reply to DorsetLady

Hi DorsetLady

Lovely to hear from you and yes the cold weather is slowly moving up the country and should hit us tomorrow - I live in Auckland so am relatively fortunate that our climate here is reasonable in comparison to the south.

Most interested to read that as a "Carer" for your chronically ill husband, GCA remained undiagnosed for 2 years and on Pred for three years!

I gather your PMR diagnosed 3 years ago?

Please tell me what dose of Pred you were on at the time and whilst you were affected by GCA?

I ask in light of the fact that this was a question I asked my Rheumy. Spec. sometime ago, that if one is on Pred or Hydrocortisone (I am on the latter), can one still get GCA?

He indicated to me - "no" as I have the steroid already in my system.

I am going to quantify and qualify this question further on my visit this week.

Also not to detract from my original post question re flu vaccine etc - I would love to do a survey and hazard a guess on how many of us have been, or still are working in a "caring role", paid, unpaid, (which is very broad no less and can't be covered via this medium), but add up the statistics of PMR amongst us all?

I digress, but thank you for your kind and helpful tips which I take on board re my original question - I have some further enquiring to do via the Rheumy this week.

Kind regards once more.

Maureengibson profile image
Maureengibson in reply to Megams

I would just like to add that your Rheumy is wrong re GCA. I had PNR undiagnosed for 14 months, and was only on Prednisolone for 3 months when GCA symptoms started. It has taken a further 2 years and visits to the countries top specialists to get a confirmed diagnosis of GCA. So it can happen, just be watchful for the signs. Take care xx

Megams profile image
Megams in reply to Maureengibson

Hi runrig.

This has taken me aback and is on my list already to question this week.

My Hydrocortisone is no where as strong as Pred (fortunately thus far my sensitive system has responded well to Hydrocort) but still have the odd pain left side of head scalp region (not temple).

I will reinforce this questioning and ask "if" or "how" can inflammation can be found in other parts of the body other than with temple biopsy?

Abundant good wishes and thank you once more xx

PMRpro profile image
PMRproAmbassador in reply to Megams

I'm replying here to cover both bits - probably the most comprehensive imaging to show inflammation in the body is PET-CT where it is available. It is a relatively new and expensive form of imaging and by no means all hospitals have the equipment and staff to do it, in 2014 there were probably 50-60 in the UK and they are well-used for cancer scanning, leaving waiting lists for other things that are perceived as less urgent. I suspect NZ may have a better device to patient ratio though.

Doppler ultrasound can be used for accessible arteries and MRA (MRI combined with a contrast material) is also used.

There is no difference in "strength" between pred and HC - that all depends on the dose and how it is given and it is perfectly possible to use equivalent doses. The difference between pred and HC is the length of time the effect lasts. The anti-inflammatory of pred lasts for 12-36 hours whilst that of HC for just a few hours - so you need to dose it 3 times a day to achieve the same result whereas single daily dosing of pred is enough and greatly improves patient compliance.

I think you need to discuss the dizziness increasing with him - you don't mention other symptoms besides the dizziness but one cause that should be ruled out in a differential diagnosis is GCA affecting the carotid artery.

Megams profile image
Megams in reply to PMRpro

Hi PMRpro

Appreciate you explaining to me the difference between length of time (effectiveness wise) with Preds versus Hydrocort - I need to print your comments out because they are so helpful - thank you very much for this.

Also the various testing methods re seeking the where about of inflammation in the body with the differing techniques and machinery.

On my list is the dizziness, which makes me slightly unstable and stumble footed on my feet which is rather disconcerting.

The only other symptoms I that would mention and spring to mind is to the left of my forehead that gets tight and sore at times, almost like a pulling sensation. All my main symptoms were predominately left sided.

Even though I fell heavily on that side, I didn't hit my head so remains mystery.

Only other clues I can think of is that I have had a detached vitreous L eye, tinnitus L ear, and L jaw sub lux at dentist - all 2014.

Oh and while I remember I had double vision for a day last year too as I re- read over old notes today I'd written (as I always do) when I saw Rheumy Spec for first time June 2014.

Kind regards once more and many thanks again.

PMRpro profile image
PMRproAmbassador in reply to Megams

Well he's wrong - the dose of pred used for PMR is nowhere near high enough to prevent the development of full blown GCA. PMR can be a symptom of GCA and since they don't do enough imaging to see where the inflammation is you could have GCA elsewhere in the body without it having got to the temporal artery but causing PMR symptoms.

Megams profile image
Megams in reply to PMRpro

Hi PMRpro - hmm..... just like runrig this is quite a revalation to me especially as I know I am far from out of the woodwork and decided to go back to my original dose of Hydrocort. after your response recently.

What other tests can they do to ascertain inflammation in other areas of the body?

Rhemy suggested vascular changes in head where two small dents in skull appeared last visit.

It is the left side of head that gives me grief from time to time with noticing the odd fleeting/momentary pain.

I have had a migraine history + with hemiplegia (R sided), through menopause now so not troubled with them like the past.

He did suggest an MRI will be required at some stage.

Within last week I have become noticeably dizzier and light headed should I tilt head back pegging out washing, bending forward and turning over in bed. These are new symptoms and my stability is questionable because of this.

I've digressed as I do.

Important to say also that I admire your daughter for the work she does whilst living with her challenging health issues - my sincere compliments to her.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Megams

Hi again Megams,

Its a bit of a long story, sorry.

Started in October 2010 with some classic PMR signs, pains in shoulders etc. originally thought it was from over-enthusiastic gardening! After about a month realised is was something else, so saw GP which led to test for PMR which came back as 'satisfactory' so that was discounted. Frozen shoulder diagnosed as left shoulder was worse than right, so treated for that with physio and cortisone injections for almost eighteen months. Despite me going back to GP complaining about the pain, no other cause was considered. Kept being told ' you will wake up one day and the pain will be gone'.

In hindsight perhaps I should have pushed more, but as I said I was caring for my husband, so his health was forefront in my mind, and I put down the fatigue to looking after him and ageing! and I'd never heard of PMR or GCA.

After about eighteen months started getting the GCA signs, tender scalp, jaw claudication etc. told it was trapped nerve from said frozen shoulder. Another three weeks and right eye became blurred, saw another GP, asked if connected to existing conditions, told No definitely not! Two days later 14 April 2014 (a date forever etched in my mind) couldn't see out of right eye at all, so went to A&E to have GCA diagnosed and started on 80mgs of Pred. That high to preserve sight in other eye, which fortunately it did, but the right was lost.

As you can see, my story it a bit extreme, but it does confirm that if untreated PMR can lead to GCA. However, to reassure those of you who have PMR it doesn't have too, so long as the dose is high enough!

This us why I always tell people to be very aware of "head" issues when they have PMR.

Incidentally, GP did admit she was negligent in not diagnosing my illness. Didn't bring my sight back though.

Fortunately, it doesn't stop me getting on with life, just makes some things more difficult - like threading a needle or any other close fiddly work. First six months were a bit of a nightmare though.

Won't stop me coming out to NZ again though, lovely country and people! Take care, DL

Megams profile image
Megams in reply to DorsetLady

Dear DL

What a story and what a survivor in the face of adversity you are. Especially in light of placing your faith with your GP believing her diagnosis to be correct in the first instance only to find that your symptoms were not dealt to for the long term..........

I am particularly concerned to read about your sight loss and basic lack of foresight by yet another GP - what your story suggests to me is that we do need to take total responsibility for pushing and asking and seeking 2nd opinions simply because some of our medical folk don't always have the right answers. Where is the accountability these days?

I hope you don't mind me mentioning without detracting from your difficult story, but part of what you have written rings loudly in my ears. It stands as a warning for me in every sense of the word.

Briefly, I was caring daily (part time) for my elderly Father 2013 until his death Feb 2014.

During this time I sustained an injury from a 2nd fall with considerable soft tissue damage - repeated trips to my Dr who told me this was arthritis and that I would have to live with it.

With time not satisfied with this, I enquired about seeing a Rheumy Spec. via other medical folk and have since had considerable number of small doses of cortisone injections to sort soft tissue damage and spine strengthening injections - this was June onwards 2014.

In hindsight I believe this was likely to be the beginnings of my PMR.

I am still under this Rhemuy who diagnosed PMR Jan 2015. My thoughts are that the on-going cortisone injections probably held my PMR in check for the meantime until my last injection early Dec 2014, then hit with vengeance when waking 20 January 2015.

I will keep in mind your story as it is horrific reading - so pleased that you have a great attitude despite your difficulties.

I thank you for sharing this with me and should you pass through Auckland on your next visit please let me know.

Hi again DL, having read the post about your history with GCA and GP's, it seems to confirm so much I have read. I now know that my GP has made several serious errors with my diagnosis, or lack of treatment. For starters I had to force a rheumy appointment, secondly the blood test was wrongly made with the wrong requests, thirdly, I had the pred stopped after five days, fourthly I have had no contact since the rheumy weeks ago....on it goes. Now I would like to make an appt with the GP and take this note to her together with the link I have from the PMRpro. Then I would like to try the pred again and see if once again my symptoms go within the two or three days, like last time. If so, I should go on the long term tapering plan that all the info I have read on this website suggests.

Whaddyfink Dorset Girl? Congrats on the wonderful attitude to your disability. Old_but not that old_Bedfordian!

Hi again DL, having read the post about your history with GCA and GP's, it seems to confirm so much I have read. I now know that my GP has made several serious errors with my diagnosis, or lack of treatment. For starters I had to force a rheumy appointment, secondly the blood test was wrongly made with the wrong requests, thirdly, I had the pred stopped after five days, fourthly I have had no contact since the rheumy weeks ago....on it goes. Now I would like to make an appt with the GP and take this note to her together with the link I have from the PMRpro. Then I would like to try the pred again and see if once again my symptoms go within the two or three days, like last time. If so, I should go on the long term tapering plan that all the info I have read on this website suggests.

Whaddyfink Dorset Girl? Congrats on the wonderful attitude to your disability. Old_but not that old_Bedfordian!

Celtic profile image
CelticPMRGCAuk volunteer

Megams, I managed to get through years of PMR/GCA and steroids without a flu vaccination and luckily avoided flu, in spite of having suffered several severe bouts of it several times over previous years. I don't know whether it was my regime that protected me: a few squeezes of lemon juice in warm water as my first drink of the day; a daily teaspoonful of guaranteed quality Manuka honey; and a daily clove of fresh garlic crushed into my main evening meal. If ever I was thrown accidentally into the company of someone with any infection/virus, I would have a piece of warm toast spread with a clove of garlic crushed into the butter immediately on my return home.

It's a very personal choice whether to have the vaccination or not, but, as with many pills, I haven't reacted too well to different vaccinations in the past and I also know too many people who have had rotten winter-long infections following their flu jabs - coincidence or not. In fairness, I do know others who have suffered no side effects whatever from the flu vaccination, but it is a decision that only you can make.

Megams profile image
Megams in reply to Celtic

Hi there Celtic

Thank you for interesting feedback in which I appreciate very much.

Heartening to know that others are out there like your self who doesn't deal too well with certain medications/vaccinations etc.

I experienced a reaction from a vaccination (tetanus booster containing diphtheria & whooping cough last year).

This vaccination helped put me down a bit further - came 2 weeks after a Novo virus.

So I am very hesitant to put myself at further risk at this stage of my health journey with this PMR, as I am presently dealing with another very mild cold virus which is the second one in a month.

Added to this is that I am booked for endovenous laser surgery next week and want to be as well as possible for this procedure.

Would love to have garlic - my gut can't cope with a substance within the garlic makeup - allium - think this is correct name and spelling, so hope word sounds familiar to you.

I am pro-active in adding as many natural remedies: use lypo-spheric vit c, vit d, plus others that are OK with meds, green tea, bone broth, chicken broth and "yes" love Manuka honey with UMF. Lemon juice is also part of my daily regime.

If I have inadvertently been around anyone who has been sneezing, upon my arrival home I flush my nasal cavity with either a premixed saline rinse or spray nose passages with Xylitol.

At least I know (psychologically) I have given myself a fair chance to remove any bacteria and/or the likes of, to safe guard myself. Obviously didn' t get it right last week though!

Will be seeing Rheum. Spec this week for my 3 week check up so will continue to chew the issue over re this flu jab.

Sincere appreciation once more - this site is a life saver for me from an otherwise very lonely journey.

I have had Pmr for 3 years, pred for 2.5 yrs. flu jabs each year with no problems.

Megams profile image
Megams in reply to suzieh

Thank you Suzieh, appreciate your response and pleased to hear your flu jabs went well with no ill effects.

Am researching further and certainly don't want "flu" this winter.

Kind regards once more and thank you again.

Interested to read the many posts here on flu jab. I have had PMR 1 year and was offered the flu jab. I accepted realising it would not protect from every flu virus. I had no reaction to it. Luckily seemed to avoid flu and colds this Winter.

Great Judi - just confirming once more as it came up invalid so removed the . after com


Have I got the above correct? If so please feel free to remove straight away.



Megams profile image
Megams in reply to Megams

Needed to re-correct myself and remove the dot.

Judigardener profile image
Judigardener in reply to Megams

yes that's right. I will take it off now. Be great to hear from you on an email. x

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