I am trying to find a common denominator/s for PMR and it's buddy GCA.
I have noticed on this lovely forum alone that many people have been diagnosed in late 2014 and I am wondering how many of you had the flu jab then or thereabouts?
I have had the flu jab with no effects except for a sore patch on my arm for a while for 8 years, with 2014 being my 9th year. This time I was really ill with cough (still have that) sinusitis, (even worse now) and many more fluey symptoms. I had three lots of antibiotics, to no avail. Then the grandaddy of them all, Claudication of my left jaw, so painful when eating that I started to lose weight, but no diagnosis until January when I saw the Rheumy. By that time and by luck, I was on Pred and the GCA had resolved until reduction to 10mg. Now on 11mg and somewhat better.
Back to the flu jab. I was told that there had been something wrong with thus years flu jab, so I am wondering if anyone else had problems this year 2014, and also wondering if there s a connection with that and so many PMR/GCA cases.
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PMRandRA
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There is no proven association between vaccinations of any sort and either PMR or GCA - except that it is possible, maybe even likely that for many people it is the final straw that upsets their immune system and sends it into meltdown. I had never had a flu jab when my PMR/GCA started, I'd had PMR for a few years before I had a shot and it has not even given me a sore arm on any of the occasions I've had it.
As far as I know there was nothing "wrong" per se with this year's flu vaccine other than the fact the main virus it was aimed at mutated AFTER the vaccine was made so didn't protect against it.
It is thought that PMR is twenty five per cent genetic and seventy five per cent environmental. A lot of people think that stress caused it to start with them, while some say it has happened after a flu jab. What makes our body suddenly turn on us?
All these things are a stress on the body and stress affects the immune system - even to the stage of you catching a cold when you go off on holiday or being ill soon after retirement. You will have been exposed to a selection of such "stresses" and eventually one fills the bucket to the brim and it spills over.
It is possible that environmental substances actually damage the immune system but nothing has been identified even in twin studies in autoimmune disorders where they grew up in the same place and one developed the disorder and the other didn't. There were a few cases where a husband and wife developed PMR - which engendered great excitement that maybe it was infectious but the results weren't significant and no infectious agent has been identified yet.
Hi there. It might just be coincidence, but I developed RA in April 2013, had my first ever flu jab in November 2013 swiftly followed by the Pneumonia jab, because I was on Methotrexate. A month later I woke up one morning unable to move my arms to get out of bed, and was diagnosed with PMR. Whether it was due to one or other of the vaccines or having both of them close together, or whether it would have happened anyway, is a mystery to me. Angela.
Thank you for your replies, all of which make sense and are very interesting. Oh how I wish someone would come up with a fail safe cure. Oh well patience is a virtue isn't it,
I believe the only thing wrong with the jab was that it did not target the strain of flu' which turned up in 2014. Usually they are correct in their predictions but this year not. I did have a reaction one year to the flu jab - my spine went rigid (like whiplash) and I have always wondered whether this was the trigger for other conditions
My husband has always been convinced that the pneumonia jab and flu jab caused me to end up in hospital with pneumonia just before Christmas 2010. I then developed PMR and later GCA. Stress an uncle (who lived 100 miles away) was sectioned and I had to clear his house and sort his care out!) may also have played a part. Who knows! I am now down to 4mg and will very carefully (slower than my rheumy recommends) hope to get down to 0 this year.
Hi, I had the sore patch on my arm from the Autumn '14 jab but was having Vit B injections at the same time so that may have helped as I had no other adverse reactions. I have had 2 other flu jabs and with the first one I did have flu like symptoms for about a week. Hope this helps
My PMR came on after a stressful period looking after elderly Mum and sick husband. Husband now recovered but Mum in a Nursing Home. That was followed by a bad cough and then the flu. I was ill for 8 weeks and left very weak. I was too young then for the flu jab. PMR followed shortly afterwards. I think that stress and nasty infections were the trigger. Maybe anything which overloads the immune system is enough to tip the balance and bring it on.
The genetic influence is interesting as my Mum, then 50, had something diagnosed as rheumatism. This went after a year or two.
My mum also had rheumatism and' jt looks as if several sufferers mums had that. I wonder if rheumatism is one and the same as what we know as PMR. I can't recall mum having GCA though, but she was very poorly with rheumatism and back problems at a young age - about 35 until she was 50 ish. Have just read that rheumatism was the name given to all of the rheumatic diseases which have now been separated, so our mums could have had any and many of the modern named immune disorders.
I relate to PatM, looking after my elderly Mum in her later years, mindful how independent she was and determined to live in her own home; she too suffered with Rheumatism and then PMR. I was working full time with my family at home. It was definitely a stressful time, not helped by the threat of redundancy at work. I identify stress as the probable cause of my PMR which followed a flu like virus.
I have had one flu jab in the year since PMR struck me, with no ill effects.
PMRandRA If you feel that it was the jab, which triggered the disease, then it may well be? I certainly am not prepared to have any more vaccination myself, not worth getting things worse. Autoimmune disease is a creepy disease, there are studies looking into pathogens (common chronic viruses and bacteria your immune system is unable to remove completely when in others, these pathogens are completely under control thanks to their functional immune system). I get to hear association with some form of underlying cancer with systemic vasculitis. Physical trauma, damage to tissues, stress, susceptible individuals with immune dysfunction (low C2 for example), - probably governed by your own genetic factors. Have you reported the adverse reaction to the authority via GP/primary care physician, PMRandRA? I bet that not many people immediately report the case (I didn't) but thinking about it later on (it's too late anyways). Vaccine damage may well hit people - the thing is that the great majority of people benefit from having these vaccines and sadly, there are a minority of people (likely autoimmune) who end up having troubles but this is rarely taken into account. There ought to be a health warning somehow.
You also have RA, I often wondered PMR is a variant of RA? I also have inflammatory arthritis. PMR was my first set of symptoms since a few years ago but it's now moving onto RA...Once the autoimmune "switch" is turned on, it does seem to progress further. What we need is a drug to turn this off again. But I digress. There was a thread by Twitchy where hormones were discussed. Knowing many of us suddenly had this around menopause / post-menopause (late 40s and 50s)..hormones could well be a factor in some of us. We do experience changes in our body through menopause. Well known effects include vaginal atrophy, thinning of skin, an early sign of heart disease (in susceptible adults) etc, these changes may be taking place in connective tissues elsewhere. I have not found any articles / studies on menopause and how it may alter our immune system. Thyroid hormone is known to influence our immune system. I have heard someone saying about autoimmune and thymus (where T-cells are produced). Far more research would be needed for certain.
No, I don't feel it was the flu jab that caused my PMR. I was just wondering if there could be a connection seeing that there are a lot of writers here who seem to make a connection. I don't know what caused it, same as everybody, but would dearly like to know. Wishful thinking?
I have been diagnosed with RA yet after 8 years I have no deformities. To me that makes no sense and my Rheumy couldn't explain that either.
So, I have Osteo, Rheumatoid, seronegative PMR and GCA. Interestingly, I have been hypothyroid since 2003 and had a triple bypass in 2012 I wasn't diabetic until few months after I started Pred. I had very high BP for years, but the 3x seems to have fixed that.
Interesting? I would make a perfect specimen for research eh?
I'm in my 60's and I have not had a flu jab since my early 20's. Perhaps I'm what is known as the exception to prove the rule? I was diagnosed with PMR about 3 years ago
I am giving this reply as a diary to try and précis it.
2013 - September- moved house with a lot of downsizing.
2013 - November - flu jab
2014 - January - started to notice pain/ ache in right upper arm - thought I had strained it
2014 - spring/summer - tried massage to no avail
2014 - autumn saw doctor - recommended chiropractor- this did not help at all
2014 - September- flu jab -
2014 - September to October- pain now in both arms
2014 - October- annual review with doctor- mentioned my arms again but to keep trying chiropractor
2014 - November- unable to raise my arms etc. so tried acupuncture on a cruise - did not help
2014 - November to December- increasingly needing help with dressing, stiffness and great difficulty in getting in and out of bed.
2014 - December- a resident where we live and who had been a senior nurse diagnosed me as she had had PMR some years ago
2015 - January- saw doctor who said that it was unlikely to be PMR but arranged a blood test - two days later I was diagnosed positive. Doctor started me on 15 mg and I am now down to 11 mg heading slowly for 10mg in the next few weeks. Yes I have the tiredness, the odd sleepless night, the increase in weight etc. but when I read of others problems I realise I am not too bad.
I am still wondering was it the stress of a house move, the flu jabs or a bad cough in July 2014 when I needed a prescription to help clear it up.
I hope you may be able to pinpoint the likely cause in your research soon for others who come to PMR in the future.
Good luck with your research.
P.s. I am over 70 and was born in Scotland - two of the major factors I gather!
Thank you for all your information. I wonder if anyone will find out the root cause. There seem to be so many "triggers" some have this one another has five symptoms oh dear, But there does seem to be a fairly frequent common denominator and that is that very few GP's seem to know about PMR and how to treat it if and when they eventually decide on a diagnosis. Your shoulder problems were identical to mine, getting dressed and undressed was a nightmare, but the worst (sorry this is rude) was being unable to reach after going to the loo! ~ I cried so much at the very idea that someone would have to help me.
If I can give you 2 pieces of advice? The first is to find every single post here made by PMRpro who is absolutely brilliant about this illness and GCA. The second is to click on her links and take especial note of the best method to reduce your steroid intake so that it benefits you most.
Good luck...
Oh and I am under 70 and English...
I've never had a flu jab... was diagnosed in May 2015 - if that is any help?
I was convinced there was a link between the 'flu jab and my PMR, diagnosed in November 2014 - shortly after my jab - and was vindicated to learn from this site that I am not alone in my belief. Makes sense really that something designed to stimulate the immune system can trigger something else. My late Mum got PMR at the age of 85 (I'm 66) so I suppose I could have got it anyway but I firmly believe that the 'flu jab was the trigger for me.
I'm further convinced that the melanoma I was diagnosed with in April 2015 was a direct result of the suppression of my immune system due to the use of steroids to treat the PMR. (Further surgery removed the melanoma and thankfully it had not spread at all).
Prednisolone kept PMR symptoms at bay until I reduced from 6mg to 5mg daily a month ago and all my symptoms have returned with a vengeance. The stiffness and pain are mainly in my lower back and thighs and mornings are particularly difficult although things ease somewhat as the day goes on.
Just hope I'm one of the lucky ones and the PMR will eventually burn itself out and I can get off these darned steroids.
Hindsight being 20/20, it appears that my PMR/GCA was kickstarted by a bout with Lyme disease in 2012 for me. 6 months after that I was diagnosed with Fibromyalgia and had multiple odd illnesses/symptoms since then culminating with my diagnosis with PMR/GCA in late June of this year. Prior to 2012 I had also had Lyme disease and Ehrlichiosis and battled with HPV for many years so my immune system was in overdrive for a long time. Being adopted I have no health history so I can't speak to the genetic component. I had a flu shot every year since 2006 except last year because I was sick and never got around to it.
I'm a 61 year old male who contracted PMR about 5 months ago. I've never had a flu shot. To the best of my knowledge the PMR developed as follows:
I was working multiple evenings on a home that I am building. The work all involved walking stooping etc on a hard concrete floor. I developed some pain in my hip joints from this work. Then, I came down with a GI infection that led to diarrhea and upset stomach for about 10 days. About two weeks following that GI bout I quickly contracted the PMR in my hip joints, later spreading to my shoulders. My theory is that a virus that manifested itself in my body during the GI episode found a weakness in my inflamed hips that led to the PMR. All of this is strictly anecdotal, but from my first-person view of the development of this disease, all of this makes sense to me.
Thanks to everyone for all of your contributions to this terrific site on PMR. Everybody keeps telling me that I should be on doxycycline for Lyme disease, or searching for some other cure. But, stories that I read on this site make it ever more clear to me that PMR is my malady.
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