I'm new here, just joining this week, I'm 70 years old.
I developed PMR in 2020 after my first FLU vaccination in 44 years, I had the Swine FLU vaccination in 1976 which also made me very sick. Has anyone else experienced this? In 1976 very few virus strains, in 2020 multiple virus strains in the vaccination.
It seems that the flu vaccine and also the Covid vaccine has tipped some people over into PMR.
There is no single cause of developing an autoimmune disorder. It is a culmination of insults to the immune system and eventually one factor tips it over the edge and it does haywire. It might be environmental, chemical, stress, injury, illness - and a vaccine is something that really has a go at the immune system so any vcaccine could be that final straw that breaks the camel's back.
It might be flu vaccine - or the flu you got because you didn't have the jab. Or the shingles vaccine. Or shingles. Or any one of a whole range of things.
thank you for the reply PRMpro,I'm still struggling to figure out how to navigate this site. Especially returning to my post and the subsequent replies.
It seems that you are quite knowledgeable about PMR. Has it been determined how long this condition lasts? Is it lifelong? Are there methods, or site that can advise how to minimize the effects and live a normal life, or as close as possible?
Have a play around the site you can’t break it. But firstly tap your avatar / picture top right of screen and sort out your email notifications - then you’ll get advised when anyone replies to you. Then it’s just a tap on your email notification to bring you back to your post on here.
Have a look at FAQs - see here - healthunlocked.com/pmrgcauk...
First few are about covid, but then in subject order alphabetically. Any you think you might want to refer to again -you can save…button under original post.
There is also a help post about how to do things -
healthunlocked.com/pmrgcauk...
..and yes PMRPro knows more about PMR than the rest of us put together!
As for how long PMR last - varies from 2-6 years -it’s self limiting so has a mind of it’s own !
This might also help - healthunlocked.com/pmrgcauk...
Unfortunately I have had PMR/GCA for over 15 years and been on steroids all that time. Wonder if it's something else after all. Long term steroids have had disastrous consequences. Hope your journey proves less lengthy and you recover in a short time.
18 years and counting here - only on pred for just over 13 years but that first 5 years means I am quite tolerant of so-called pred effects, I say so-called because while it is fair enough to blame pred - many of them are seen in untreated PMR because I suffered them! Weight gain, mood swings, irritability, changes in hair and nails, craving carbs ... All improved very quickly once I started pred.
I suggest you have a good read through the FAQs - contains lots of the answers you will be looking for, already there ready and waiting.
healthunlocked.com/pmrgcauk...
You can find all your previous posts and replies on your Profile page, click on your name/avatar in any comment you have made.
If you select to be notified by email of replies to you you will have a direct access to them by clicking on the email.
PMR and GCA are unusual as autoimmune disorders in that the underlying cause of the inflammation does usually burn out and go into remission sooner or later although you can relapse at any time life-long. It is rarely as fast as some doctors would have us believe - in my experience in years on the forums about a third are able to get off pred in two years, half by 6 years and those are figures claimed in a study by the Mayo in Rochester - so half are on pred for longer than that but usually at a low dose and it is difficult to tell whether that is the PMR or poor adrenal function.
There is little you can do that will make much difference - but lifestyle adjustments and sensible use of pred, with a slow tapering approach will help. You are unlikely to find any better site than us. We have all walked the walk and much of the experience is to be found in the FAQs.
Hello and welcome to the forum! Sorry, it’s a good club, but not one anyone wants to join. I hope you find it as much help as I have done. We are all here to share experience and advice, and to try and answer your questions - basically give you support. Have a browse round FAQs on here, a great resource.
Thank you for the reply SheffieldJane,It is cheering to know I can share my feelings with people who understand the condition and how it affects daily living and mental attitudes. I'm glad I found this site. This is not the retirement I was looking forward to.
I too developed PMR following my covid vaccine in Dec 21. My GP said it’s the likely causation. Otherwise I was fully fit and healthy and no genetic links. Now on a journey into the unknown.
Thank you for the reply HomeBee,I'm truly sorry to hear of your issue. ,It is cheering to know I can share my feelings with people who understand the condition and how it affects daily living and mental attitudes. I'm glad I found this site. This is not the retirement I was looking forward to.
I know correlation isn't causation but my PMR started right after my first ever flu jab. I was 59 .
As i keep explaining: over a lifetime, there is an accumulation of insults to the immune system that disturb its status. Eventually one straw break the camel's back and the immune system goes haywire. It might be the shingles jab, it might be shingles, it might be illness, accident, environmental influences, emotional stress, it might be the flu jab, it might be the flu. Many had never had a flu jab, or the shingles jab - I'd had neither.
There is no single thing to blame and avoid.
Thank you for the reply Sanekate. I'm truly sorry to hear of your issue. ,It is cheering to know I can share my feelings with people who understand the condition and how it affects daily living and mental attitudes. I'm glad I found this site. This is not the retirement I was looking forward to.
As SJ says, welcome to the club no one wants to join. It is certainly a journey into the unknown and you discover new things about yourself that will make you reassess everything you thought you knew. The combination of drugs and symptoms will have you trying to work out what causes what effect and it is different for each individual. You will find that GP's and Rheumatologists vie for preeminence with their pet theories and try to fast taper people off pred. because they often feel it's better to reduce than persist with it. Listen to your body and advocate for yourself strongly if you ever feel that the course being pushed on you doesn't sit well with the way you feel at the time. Recognize you will get weaker as the prednisolone reduces your muscle mass quite dramatically and you will therefore be unable physically to do what you were once used to doing. The most important thing is not to fight it but try and understand where you now are and accept that how you did things is past and you need to adapt to what you can reasonably manage now. It's almost impossible for someone not experiencing this disease to understand the change. Good luck.
Thank you for the words of encouragement cycli. I will probably re-read you response whenever I need a boost to fight the mental battle. Which is almost as hard as the physical issue itself.
So true. The mental battle is hard. Like you, this was not the retirement I had planned. We all share this and get frustrated by the radical change it engenders. For example, I now seem to have a cold and it is skewing the way I feel and my reduction of pred. I'm tempted to increase dose but am resisting at present as I don't want to go back up. Last night was bad but today seems better. Good luck.
Hi Me_2. I had the flu jab for several years with no problem so had no reason not to have it in November 2020 but the day after I had it I couldn’t straighten my arm and within days my body started to get stiff and I had great problems walking. I very stupidly thought it would go away but finally contacted my dr just before Christmas & was diagnosed with PMR in early February 2021. Why such a reaction to that jab after so many years of no reaction I guess I’ll never know. Good luck with your treatment & listen to your body & rest when you need to. Don’t try to reduce if you can’t cope, you need quality of life. Take care
Thank you for the reply Sewingdays,I'm truly sorry to hear of your issue. ,It is cheering to know I can share my feelings with people who understand the condition and how it affects daily living and mental attitudes. I'm glad I found this site. This is not the retirement I was looking forward to. A response for PMRpro seems to sum up my problem. Maybe its not just one thing, but a culmination of many things with the FLU jab being the last straw that broke the camel's back....
Hi Me_2 welcome to the forum. There are many members here with years of practical experience of PMR and GCA as well as a raft of medical knowledge who are happy to listen to and provide help and advice to all. I've had the 'flu vaccination for years as well as the Shingles and Pneumonia jab followed by four Covid jabs and none of these has either given me, or made worse my PMR symptoms. I'll probably never know what set it off but as PMRpro says something topped my AI system over the edge. If you are going to have an AI disease then PMR is certainly not the worst around and although the side effects of Pred do sound horrendous many can be mitigated by sensible behaviour and diet. Also they affect different people in different ways with some having/hardly any effects and others lots. Hope all works out OK.
Oh yes, I got PMR after the flu shot in 2019. Does your doctor believe the vaccine caused your PMR?
After I showed him multiple links to finding pubmed.ncbi.nlm.nih.gov/107...
He believed me . As I am a person that is affected adversely by vaccinations I never received the COVID vaccination. That probably saved my life. I've had COVID twice and took Ivermectin and Hydroxychloroquine and both infections were mild. I will never take another vaccination in my life. That is also on my medical record. I'll take my chances thank you
Relationship between GCA / PMR and vaccinations
Upcoming vaccinations for flu and Covid
Reducing prednisolone and flu vaccine 
Flu jab and Covid vaccine
