Dumb question of the day: I know I should know this... - PMRGCAuk

PMRGCAuk
9,433 members16,604 posts

Dumb question of the day

I know I should know this but just to confirm getting the flu jab is not a problem for those with PMR is it? I do sometimes wonder what kicked off my PMR and all I can think of is having the flu jab a few weeks before hand....what do you think?

Thanks.

102 Replies
oldestnewest

This question has been asked a lot on the forum and the general consensus is that getting the flu jab is not a problem.

I have never heard it suggested as a trigger for PMR though.

8-)

1 like
Reply

Maybe I am coming up with excuses as to why I got PMR....

Reply

I mentioned this in response to another question as I too am looking for reasons for my body going into immune overdrive a few weeks after last years flu jab. Very suspicious of the 'adjuvant' that was added to the UK over 65 vaccine for the first time in autumn 2018...I think more research needs to be done into the use of these adjuvants but I fear it won't be. The truth is no one really knows, and we all agree that a bad dose of flu can cause serious complications too, especially if ones immune system is already compromised.

1 like
Reply

The adjuvants will be subject to all legal medical testing, and any concerns flagged up will be researched. A lot changed after Thalidomide....

Reply

I'm not for a minute suggesting adjuvants in themselves are harmful, just the way some people may react to having their immune system over stimulated.

Reply

I can’t help wondering too. At the time I didn’t like the idea of giving us oldies an adjuvant and queried it but was pushed into having it with “ oh it will boost your immune system. “. Hmmmmm!

Seven months later PMR

However my Mum had Polymyositis and our son is type 1 diabetic so auto immune is defo in the family. Who knows?

Reply

Have you seen the link sent by Heron which is very technical and detailed but addresses the issues of auto immunity very well, especially towards the end in the discussion and conclusion which is more general and mentions the genes which may be responsible for some people developing AI conditions, or for them being affected by vaccines. Also a very interesting response from 'mpearl' later in the thread. I'm having difficulty keeping track of all the responses unless it is a direct reply to something I've posted.

1 like
Reply

Thanks Susi,, I will look at it.

Reply

Just read it all. The problem is that if Pred has lowered our immune system, do we now need the adjuvant in the flu vaccine to protect us? Or will it fight with the spread and cause further trouble? Oh bugger!!!!!!!!

Reply

Sorry not spread—- Pred

Reply

I know...it's catch 22...that's the dilemma.

Reply

The problem has been that your immune system was being hyperactive - and the pred has calmed it down. The concern is that the adjuvants stimulate the immune system more to produce the antibodies to protect from flu or whatever - our immune system normally becomes less reactive as we age anyway. If the immune system is already known to be malfunctioning - there must be a high chance that kicking it hard might result in an overreaction.

4 likes
Reply

I think we should get the FLU injection WITHOUT adjuvants (which stimulate the PMR). Or can.

Reply

Hi sq, if you look closely you can see who the reply is to there's an arrow and then the person's name. If there's no arrow and name then the reply is to the first post. It can be confusing. If I see an arrow and name I scroll up until I find the name and seewhat they said then just read the back and forth to that message. It's supposed to be nested but it's not clear on my phone . Tablet is clearer.

Reply

My PMR started shortly after the flu jab and I did wonder if the two were related

4 likes
Reply

Me too

3 likes
Reply

As long as the vaccine is not a live one then you should be fine.

1 like
Reply

The flu vaccine is usually made with killed virus so it should not be a problem. There is a potential issue with the fact that it is stimulating the immune system but as a bout of flu is probably loads worse than a few days of flulike aches and pains I think the choice is pretty clear. I checked what was in the flu shot given in Nova Scotia last year (this year's info not posted yet) and none of the flu vaccines included an adjuvant, not even the "extra strength" one given to people in long term care facilities. I expect similar vaccines are offered all over the Northern hemisphere.

5 likes
Reply

Yes it´s the adjuvants in vaccines that many thinks trigger deceases. - good thing nothing bad is in yours. - they can be horrible ...

Reply

I'm interested that you say that 'many' think that adjuvants in vaccines can trigger diseases. Do you know of any research on this?

Reply
1 like
Reply
1 like
Reply
HiddenThis reply has been deleted

Thank you so much for going to the trouble of sending that information and the links; very interesting (and disturbing) reading. I'm not a scientist (unless you count A level biology 😊) but my instincts tell me that there must be something to account for the way I have been this year, starting a few weeks after having the 'new improved' flu vaccine, and of course there are thousands of others who believe that they or their children have suffered as a result of vaccination. It's a difficult subject as there is no doubt that vaccines save lives and becoming ill after a vaccination isn't proof that the vaccine has caused it but one does need to be wary. I never gave it much thought before having the 2018 vaccine, just went ahead as usual, I'd never even heard of adjuvants and how they're designed to stimulate the immune system. Autoimmune disease was something I had very little knowledge or experience of until now. Thanks again for the interesting information and for your original far from 'dumb' question.

1 like
Reply

Yes I agree it is very disturbing. I think vaccines can save lives if they could only make it without the adjuvants. The toxic aluminum not to mention formaldehyde, mercury and aborted human fetal tissue and all the other stuff does not sound good to me. I think you are right about the 'new improved' vaccination. I will rather take my chances with the flu.

Reply

Aborted human foetal tissue is not and never has been used in vaccines:

lozierinstitute.org/use-of-...

See Q3a and 3b

The derivation of the historical cell lines mentioned is something different.

1 like
Reply

Great article - thanks. So monkey cells and insects yes. Seems to work better with that. To fight ebola everything goes, but the flu ....maybe not.....probably a matter of opinion....

Reply

If you eat anything that's processed at all it is allowed to have a percentage of insect bits in it as like bacteria they are everywhere. I have to forget that as someone who likes peanut butter. You may be veggie (I am...30yrs), however I fail to see the difference between cows and monkeys if you consume one then why not the other. Everyone has to make a decision with their conscience and draw their line somewhere I suppose.😊

1 like
Reply

No I don´t eat anything processed, but I´m not a veggie either. I do think it sounds better to eat insects than haveing them injected. Yes it is probably a matter of personal choice from some information and the feelings you have.

Reply

No herbs or spices, vinegars, pickles etc?

Reply

Yes, I shall avoid the adjuvated flu vaccine this year. I think my body has had more than enough medication for one year and needs a chance to get back on an even keel. Just for the record I don't think the 2018 'Fluad' vaccine contains aluminium, it says the adjuvant is oil based, MF 59 squalene...no idea if that's better or worse but aluminium sounds very worrying, it used to be linked to dementia (another modern 'epidemic') but don't know whether it still is. Thanks again for all the interesting information you sent. I shall be armed with it when my GP tries to persuade me to be vaccinated!

2 likes
Reply

Why not take the non-adjuvated vaccine. I have had it for 19yrs and apart from a sore arm for 24hrs I have had no ill effects.

2 likes
Reply

Yes, I too have had the non adjuvated under 65 flu vaccine for several years (because of being a carer for my parents) and have had no problems except, as you say, a sore arm. Last year my husband and I became eligible for the new adjuvanted over 65s vaccine and because the vaccine was in short supply (which meant we wouldn't get it till very late in the season) we asked whether we could have the under 65s vaccine instead, and were told we couldn't, but not why we couldn't. If I now have a (possible) medical reason for wanting the under 65s vaccine maybe they may reconsider but my instinct is they won't, they'll just go by the book. To be honest I'm a bit scared of having any sort of medication, injected or otherwise, after all the bad reactions I've had to just about every medication I've been given this year. Maybe I'll have to resort to wearing a face mask to protect myself from germs!

Reply

I wipe all supermarket trollies etc with antibacterial wipes or tissue with the gel on. I then make a concerted effort not to touch my face until I can wash my hands at home. Sometimes more successful than others! Apparently some research shows we touch our lips, nose or face almost 16 to 23 times per hour. For example.....

ncbi.nlm.nih.gov/m/pubmed/1...

Reply

Hi Poopadoop, I'm carefull too, although not so careful that I wipe supermarket trolleys. Reading that link I fear I could become quite OCD! 😯 I'm generally very healthy and hardly ever pick up germs so this illness- ridden year has been a shocking (and humbling) experience. I would always have the grandchildren if they were poorly and never caught bugs off them...the only thing I ever caught was the norovirus after cleaning up after my mother, which was understandable, and I got over that very quickly.There is a school of thought that says exposure to germs in the environment is good for ones immune system but of course it depends on whether one is in good health in the first place and ones immune system is strong enough to cope. It's a very interesting subject, and one to which there is probably no answer because we're all so different.

1 like
Reply

I also take a dmard so my immune system is suppressed more than just with pred. I have diabetes too. I started wiping the trolley after seeing a few people sneeze into their hands and push the trolley. It's the drs surgery and pharmacists that are places to get the most popular cold/flu virus. And yes I know anti bact wipes do nothing to viruses (in the main). Since I started doing it I haven't had colds. The one time I missed flu jab...I got flu.

Reply

Yes, its frightening when you think about all the germs out there, I've certainly been a lot more aware of people coughing and sneezing all over the place since taking prednisolone.

1 like
Reply

You can ask to have the alternative for any vaccination , and the types of needle used to inject it, if you have a good medical reason for needing these alternatives .

If your GP refuses they have to give you an appropriate reason why , which you can tell them you will be checking on independently and will make a complaint about if you are being given false medical information to uphold limits based purely on economic reason or Practice bureaucracy.

If you have a need to a medication , as treatment or a preventative measure , it is your right to get it in the form appropriate to your own medical history , no matter what excuse your Doctor might try to give you.

1 like
Reply

Thanks for the advice, I'll discuss it with my GP when/if I can get to see her. I have no proof that last years adjuvated flu vaccine has caused my ill health this year (no way I can have) so I don't think I can ask to be treated as a special case, but I see my rheumatologist on 25th of this month so I'll see what he thinks. Incidentally, what difference does needle size make? Just to put it into perspective though, my husband (and many of my friends) had the same over 65s vaccine last autumn with no ill effects and there is no way I would advise any of them not to have it this year its just the way I feel I reacted to it.

Reply

I think you can ask for it on the basis that not having one at all is hard but you can't have adjuvant jab without feeling anxious it made you ill. Ask at local pharmacy too. I have had mine at Tesco pharmacy for 2 years.

1 like
Reply

Thanks Poopadoop, I usually have them at the supermarket pharmacy too, more convenient than the GP. It was either Tesco or Asda that said I couldn't have the under 65s last year that's why I thought I'd discuss it with the GP this time.

Reply

You should be fine. I suppose they are limited in what changes they make to get the "contract".

1 like
Reply

We'll see, I'll let you know. I'll deal with it when next few appointments with gynaecologist and rheumatologist, plus blood test (fingers crossed) are over at the end of the month. One step at a time.

Reply

The appointments go in cycles do g they..

Reply

Never had so many appointments in my life as I've had in last 6 months...must have cost the NHS a fortune.😳

1 like
Reply

They have made some of it back from.me for carparking!!

1 like
Reply

😊 Me too.

Reply

Do they have compromised immune systems though?

Reply

Sorry, not sure what you mean. Has the reply gone out of sequence?

Reply

I was asking about the people you mentioned who didn't have problems with the flu jab with adjuvants?

Yes - this forum has a really irritating nesting format so that a question/comment ends up miles away from the relevant comment.

1 like
Reply

Thanks for the clarification. I keep getting lost on these threads too, plus there seem to be two flu threads running simultaneously. So much for me being reluctant to post originally. Obviously safety in numbers. 😊

My point was that neither me nor my husband or any of our close friends had any immune system issues before they had last autumns adjuvated flu vaccine, and no one, except me, (and another friend who I suspect may have been affected) have had any ill effects, so obviously it is fine for the majority of people.

Herons link seemed to explain possible reasons for this.

Reply

That's right - but when you are the one it is a bit late ...

Reply

Yes...too late for me now, but hopefully I can avoid the same thing happening again...that's if the 2018 over 65s flu vaccine really was the cause of all my illness this year. Of course I can never be certain, that's why I wondered whether anyone else had the same thoughts or experiences.

In hindsight I feel I ought to have been more aware of what I was having injected as I know I have a very efficient immune system (before this I had only been to my GP once in 20 years!) and also one that can overreact at times, so the writing was on the wall really...I ought to have researched what exactly an adjuvant is and insisted on the under 65s vaccine which I was fine with. I know it is difficult for people on this forum (me included currently) because our immune systems are being suppressed by prednisolone so we need all the help we can get in protecting ourselves from illness, that's why I didn't know whether this forum was an appropriate place for the discussion, but it seems that other people are thinking along the same lines.

4 likes
Reply

You could go to a pharmacist and ask for the vaccine you want? You may have to pay for it but they may be more flexible than your surgery.

Reply

Tried that last year at the pharmacy (because of lack of availability of the 'new improved vaccine' and was told no, but if I decide to have it all all this year I might be more insistent. I think my GP may agree when I finally get to see her, she is usually quite compliant though rather elusive!

Reply

I have a prescription to pick up today and will ask if flu jab there yet. I will ask if >65 can have <65 injection, and if paying makes a difference. I will add answer to the thread I posted about flu jab.

2 likes
Reply

Thanks, look forward to hearing the response.

Reply

It's soooo typical. The flu jab person wasn't there and it's a couple of weeks away!! I will be exploring further afield. 😆

1 like
Reply

☺️Never mind, typical as you say, but thanks for trying. I'll try to find out sometime after the next two weeks when my other appointments are over, for now at least!

2 likes
Reply

I know! Doctors are becoming as rare as hen's teeth! Good luck on your quest! :)

1 like
Reply

Do you use antiperspirant deodorant?

Reply

Hi, I do try to avoid using antiperspirant deodorant as much as possible as, aside from the fact it contains aluminium (or maybe because of that), I find that it irritates my armpits. Luckily I'm not too 'sweaty' so it isn't an issue, although interestingly, I almost posted a question on the forum about the return of ones own adrenalin (apocrine glands?) when below 7mg prednisolone, but as it wasn't too much of an issue (except for needing to use antiperspirant more than usual) I decided not to. I'd actually forgotten about the aluminium content till you reminded me. Way back in what must have been the 1980s it was concern about aluminium cooking pans...I remember my mother in law throwing all hers away.

Reply

That was why I asked - I stopped using them years ago but it wasn't long before the deo I did use came off the market and at the time it was difficult to find alternatives. That was the point I tried out no deo - has saved me a fortune over the years ;)

2 likes
Reply

Hi Miss.,

I would venture to guess you have never had true influenza. If you have had it, and still prefer the illness to protection...i hope you survive the next infection.

I have had influenza, spent 2 weeks in hospital, developed pneumonia, and had a 6 month recovery time.

It is a very serious illness, and as elderly individuals with auto-immune disorders, we are particularly susceptible to the severity of influenza.

I am headed to get my 35th flu jab today.

Good luck with the decision you make...

Just sayin...💃🏼

Jerri

PMR diagnosed 2013

5 likes
Reply

Don't accept all you read in the link to natural news who say, in very small pale print:

"Truth Publishing International, LTD. is not responsible for content written by contributing authors. The information on this site is provided for educational and entertainment purposes only. It is not intended as a substitute for professional advice of any kind. Truth Publishing assumes no responsibility for the use or misuse of this material."

There is a lot of fake news about the vaccine debate.

4 likes
Reply

I agree, everyone has their own agenda and it's easy to make statistics prove anything depending on ones point of view. Really all you can go by is gut feeling, personal experience and weighing up the pros and cons and even then you just never know.

Reply

And just about every other medical question too.

You need to be very careful to consider where you get your information from , compare it with other comments on approved health sites , and consider your options with a relaxed , open but logical eye.

Reply

Dare I step into this controversy?

ncbi.nlm.nih.gov/pmc/articl...

Not that I understand it really, but it does seem to be addressing the question.

2 likes
Reply

It's far too long at this time of night for me but the most important sentence I have read so far is.....

"Individuals developing a post-vaccination chronic disease are rare when compared with the number of vaccines administered. "

I will read tomorrow, so we reserve judgement on the whole thing.

2 likes
Reply

Thank you for the link Heron, I've just had breakfast and only looked at it briefly, and I need to go out today, but I will definitely study it later. Just one thing I wanted to say, I don't see this discussion as a 'controversy', more information sharing, and I think it's a shame that some people (I dont mean you) see it as adversarial as I think it puts off other contributors. Some comments have made me feel reluctant to pursue the issue, and maybe this forum isn't the place for it, but various people (some 'lost' in the thread) have also mentioned that they related the onset of symptoms to the flu vaccine. Of course there is no way of telling whether any of us are 'right' or not, and obviously not everyone is affected, but I think these issues should be discussed, and investigated as having an auto immune disease is a serious and often life changing condition and if triggers can be avoided then so much the better. In reply to one comment made, I know I'd definitely rather have a dose of flu than what I've had this year, part of which was flu like symptoms for two weeks anyway, but obviously people with serious health conditions already need to protect themselves from further complications caused by flu.

Reply

Just read the thread (got so engrossed I had to postpone my outing! 😊) As you say, very technical and detailed but the discussion at the end and the conclusion are very enlightening. Thank you. Didn't realise there were so many other posts on this forum about flu (and other) vaccines, guess I'm still finding my way around.

1 like
Reply

The only reason that getting the flu jab may be a problem is that it seems there is going to be a shortage!! This may get worse with B*e*i* .

1 like
Reply

Some shortages of meds already in the UK according to the news

8-)

Reply

There is an HRT problem, but I think that is a particular one not a general one, have you heard if any others?

Reply

Mycophenolate by Zentiva - pharmacies say they can't get it, manufacturers insist there isn't a problem. It matters because others make people ill.

Reply

I suppose there are always going to be individual shortages for specific reasons. Mychophenolate had a shortage last year, goodness knows why, but I thought it was improving. It is when we find we can’t get our medicines at all when we all really start to worry.

Reply

Prednisolone is on the list

Reply

I am getting my pred OK. I notice that Prednisolone Acetate 1% Ophthalmic Suspension was on the list in August.

Reply

It is possible the flu jab was the straw that broke the camel's back and sent your immune system haywire. But it could equally well have been you getting the flu because you didn't have the jab. Or something else that coincided with it.

But I have my flu jab every year - it may not be perfect but it does reduce the risk of getting it a bit.

2 likes
Reply

Always appreciate your advise. Thanks. X

Reply

And "they" do say if you do get the flu anyway it is likely to be a less serious case than without the shot.

2 likes
Reply

Yes, I got flu this year (first time ever) - about 3 weeks after a hip replacement (no connection, other than I was obviously “a bit low” following surgery) - it only lasted about 24hours, but I still felt dreadful! Goodness know what I would have been like if I hadn’t had vaccine.

2 likes
Reply

Thanks for everyone’s excellent comments. It’s a boost just reading everyone’s thoughts.

1 like
Reply

I didnt want to scare anybody off vaccines. That would be irresponsible. But when it comes to adjuvants I think it is good to have all the information you can get. And if the information isn´t correct, it is good to know that too. So a discussion is almost always good.

It seems you can get vaccines now without adjuvants. And because of this discussion we now know.

2 likes
Reply

I’m rather afraid the original remarks, especially the emotive ‘fact’ that has been shown to be untrue, would have put people off vaccines. Same as happened with the false research info about MMR vaccine, which I think spread via sites like Mumsnet. Sadly the discussion would not have been seen by early viewers unless they choose to revisit the post.

Reply

My PMR started after a flu shot.

3 likes
Reply

I am a retired medic with PMR - on steroids for the last 6 years. Over the years I have had > 20 ' flu jabs with only local side effects (sore arm etc), including 3 'flu jabs whilst on Pred.. Last year the NHS only provided the adjuvanted 'flu vaccine, Fluad, for those aged >65 years and I had a bad relapse of my PMR. Before the jab I was on Pred 2.5mg alt. die 3.0mg. After 6 weeks of deteriorating health I had to up my steroids to 10mg and have slowly decreased over the last 10 months to 5mg which is still nearly double my previous maintenance dose.

I believe that the adjuvant called squalene in Fluad caused the problem for me. It is possible that my reaction is what has now been called 'Autoimmune Syndrome Induced by Adjuvants' or ASIA syndrome - basically fatigue, myalgia and arthralgia after adjuvants, largely in people with pre-existing conditions like PMR.

I have told my GP that I will not accept any vaccine with adjuvants in future if an alternative is available - except that it may not be paid for by the NHS. Last year those under 65 got a 'flu vaccine without adjuvant. It was only recommended for older people as, in general, there is a poorer immune response in older people. However PMR sufferers have an over active immune response which is being suppressed by steroids - so it makes no sense to me to 'gigger up' the immune response with adjuvant and then have to increase the steroid dose to suppress my immune response.

My summary is that one 'flu jab is not the same as the next and, for me, adjuvant appears to be a problem.

I have written this up in a review and submitted it for publication. I can forward the link if it is accepted.

3 likes
Reply

Thanks so much. So I am going to insist on a flu vaccine without adjuvant (I think the 2019 flu vaccine has squalene). Not 65 yet though so not sure they will give it to me. I would be happy to pay for it.

Brilliant info. Really don't want to upset my already troubled immune system.

Thanks again. Have a good day.

1 like
Reply

Thanks for this reply. After reading everything I could find about the 65+ vaccine last year I decided it was not sensible, as you say, to 'ginger up the immune response' and requested the other option. I had no adverse reaction, nor did I have flu. Hope to do the same this year.

2 likes
Reply

Yes please do. It is very important we get all the information possible. Brilliant reply thanks. To get the right vaccine could save some a lot of trouble.

1 like
Reply

I've only just found your post (so easy for things to get lost in these threads) and your point is exactly the one I am trying to make and a very welcome response from someone with medical knowledge and personal experience. I would very much like to read your review.

Reply

The issue of adjuvants has been discussed on other threads and the information re them stimulating the immune system is very, very easy to find via Google and peer reviewed research is available and contextualised by embedding it in the existing research. My advice is same as always re meds....do your research, read the patient info leaflet. If a site says it's for "entertainment" purposes in its blurb, or is a "vlog/blog" perhaps it's not a rigorous research source. I can set up a website and say what I want and make it look professional as can anyone with the skills.

Mpearl, I just wondered if you could tell us what your medical experience is and where you are intending to submit the research.🌻

1 like
Reply

I've been looking for info about adjuvants on this forum and online for a while now and not found it easy...the NHS line seems to be to advise everyone to be immunised for everything regardless, and I don't know about anyone else but I was never given any info about the Fluad vaccine, and never questioned it...too trusting maybe (but not any more🤔). I'm very grateful to Heron for posting the link which gave a balanced view, and to others who have had similar adverse reactions to the one (I think) I have. Seems there is a lot of interest but things are getting lost in the thread...I'm having trouble keeping up...still finding my way around this forum. The 'dumb question' bit amused me too.😄

2 likes
Reply

I just use various search terms around adjuvant...side effects, immune system etc and I came up with several research articles. Then if course it's a case of asking who said what and why! If I can I find a "review" of a subject as it offers ideas from multiple sides so you can fully assess the evidence. I had to do this sort of rigorous searching for my job when I worked so I find it relatively easy to find stuff. Whether I can understand the more medical and technical papers is another matter!🙄😂😂😂

Reply

Yes, it's finding sites that are trustworthy and don't have their own agenda. I usually try to use NHS websites for balanced information but they aren't very helpful on the subject of immunisation, except to say have every immunisation you're offered.

Reply

I quizzed the nurse who was in a real hurry to vac me.

I said is the NHS wanting to kill all us oldies off ha ha.

Little did I know!!!

She said it was Fluad to protect my immune system. I t seemed like a good idea at the time

Reply

All the best with the submission - is it as a proper publication or a letter? I shall be interested to see the link if it gets through.

Interesting and timely - as this has been discussed on the forum in the last week or so.

2 likes
Reply

It's not such a "dumb" question is it. 🤣🤣🤣

1 like
Reply

You will only know if you have the vaccine ,l am sure it is usually OK.and of course flu itself is a bad illness to get not only for us but anybody else . I have heard of Statins possibly triggering PMR,but not the flu jab .

Reply

You may also like...