I’m from down under. I’ve just joined this site. I recd my 4th covid jab in early June along with a flu injection. I’m wondering if my, suspected but still to be properly diagnosed, PMR may have come about because of both or one of these injections. The pain in my right shoulder started about 2 weeks after the injections. It gradually got worse by extending into my neck and then left shoulder and then to my hip flexor and back. This took a number of weeks progressively getting worse until I needed help to get out of bed and to get dressed. I had resisted going to a doctor because I was travelling. In the end I went to a doctor in France who diagnosed it as a French name which I think translated to PMR. He prescribed 80 mgs of prednisolone gradually reducing after 4 days. It worked wonders but I haven’t been able to reduce below 13mgs without going back into severe pain and stiffness thru all of my body. My second visit to my rheumy specialist is on Thursday to get my results.
Have others experienced PMR after these injections? Has anyone got any advice on how to reduce prednisolone intake! - I do not like the idea of being on this medication for too long. Has anyone got any good advice? More exercise - what type? Change of diet - what type of foods? Anything to help me to a recovery.
Sorry this is so long winded and maybe my inquiries should be brief. Feel free to give me advice re my posts.
Cheers
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200751
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Welcome to the forum, 200751. It is possible that having two vaccinations at the same time may have triggered your PMR; the recommended interval between vaccines is two weeks.
The main thing now is to get to grips with PMR and all the implications. You will find a wealth of knowledge and experience here.
The following link is provided by MrsNails and to be found in PMQs:
I got PMR 5 days after my first AstraZeneca vaccine in March 2021. I am still on prednisolone now. Others will be along to advise on diet and lifestyle.
It is not uncommon for patients to believe that their PMR was due to a vaccine - one at a time is enough! However, there is no single cause of PMR and it is considered that whatever apparently caused it in the end, it was just the final straw after years of insults to the immune system - illness, injury, stress of all sorts in life, chemical and environmental effects including medications and vaccines and genetic disposition. Finally something tips the balance and the immune system goes haywire, no longer able to recognise the body as self and it starts attacking the body tissues in error. If it hadn't been the jabs, it could have been the illness they were to protect from or the next stressful event in your life.
If you look at the FAQs there is lots of information there - don't try to read it all at once, be selective at first, but there is a lot about tapering there. Then ask more specific questions.
DorsetLady has a set of welcome introductory posts which I'm sure she'll be along with soon.
The French have some strange names for PMR - and that doctor had a strange approach to it to! 80mg is high for GCA never mind PMR where up to 25mg is the recommended sort of dose to start. You will get below 13mg - but only once the activity of the underlying autoimmune disorder has calmed down. It can take a while at the start but most people do get well below 10mg fairly soon but we are talking months here, not weeks.
What a wonderful forum. I don’t feel alone in my pain and frustration here. Thank you to those people who took the time and effort to respond to my opening post. Yes I think the ambassador is right when saying that the reason for PMR is not just due to the covid jab but was perhaps the last straw.
I can see that certain pieces of advice from this forum will be very helpful to me. I very much like the idea of natural remedies some of which I am trying and I will explore others. Unfortunately in the meantime I have to take my prescribed medicine to get through this.
A question - 13mgs of Prednisolone sounds like a lot after reading some posts. My doctor says to take it in the morning but it seems to me that maybe I am better off taking it at night or perhaps some of it at night because it takes me a couple of hours in the morning to get mobile. By mid morning I feel fairly normal. Have others had any improvement in their mornings thru taking meds at night?
Morning, 13mg doesn't sound particularly high given your diagnosis in June. It may well be that is your base line for the moment and you will need to stay there for a few weeks, until all the symptoms are under control, before starting your next taper downwards. There are many of us here who take our Pred around 02:00 so that is in our system and ready to act as soon as the nasties that cause the inflammation (IL6's) come out to play around 04:00-04:30. Hopefully that will give you a better morning and get you through the day,
Bear in mind that most of us here have been on pred and tapering for much longer, not just 6 months, and you had to get from 80mg whereas many were only at 15 or 20mg to start. It took me over 4 years to reliably get from 15mg to under 10mg though I did get lower later.
Splitting the dose is a great thing, I was like you at the beginning of PMR and I learned from this great forum about splitting. I do 7 AM and 7 PM and it made me pain free all day and all night.
As said your French GP was probably worried about GCA hence the 80mg dose for 4 days (to protect sight)... and now you have got down to a dose which is more PMR like - but probably going below what you actually need on a daily basis.
my PMR started after my first covid jab in 2021, was fit and healthy up until then, by August 2021 was so stiff and in so much pain I could hardly function! I did go on to have 2 further jabs plus the flu jab before I realised any link. I was doing well and tapering up until catching covid in July this year and presently in a right state! Saw a rheumatologist yesterday that wants me to try either methotrexate or leflunomide, read the leaflets on both and don’t want to take either due to the side effects plus she said I needed a covid jab, flu jab and pneumonia jab before starting the meds (that’s not going to happen) !! I said I got ill after my first covid jab, could tell she didn’t like me saying that!!! She said well I have had 5! I wish I had said well you haven’t reacted to it like me. Going down the diet route to see if I can fix myself. Plus been reading about turmeric so have ordered some
thanks EricErnie for your reply. Yes I’ve been trying turmeric, ginger and lemon tea over the last couple of weeks (my made up version) and drink quite a bit of it each day - can’t hurt me??? but haven’t noticed any real benefit yet. I’ve seen my rheumy once, a month ago, and see him again this week. Very hard to get an appointment with but fortunately he has an excellent bedside manner. Sounds a little different to yours. Mine started me on hydroxychloroquine.
I stumbled across this post by complete accident, and am I glad I did.
It’s not about me, but about my husband. In Feb 2021 he was 73 but still strong and vigorous and we happily had our first Pfizer Covid jab, initially we both felt absolutely fine, just a lump and I had a bruise at the jab site. Within 7 days however my husband was complaining of painful knees and extremely painful left shoulder.
I will cut a very long and troubling story short, suffice to say that although the GP sent him for various investigations it was March 2022 before PMR was diagnosed by a rheumatologist.
I am blaming the Covid jabs 100% for what has happened to him, as after the next jab 12 weeks later he got worse, and after the booster 6 months later, he was in a wheelchair, had lost 3 stone in weight and we really were expecting him to die. Two days after his PMR diagnosis and two days on 40mg of Prednisolone, I swear it was like a miracle, I finally have my husband back!
I can see I (perhaps) need to settle in for the long haul. From these posts I can now see that tapering and how you go about it, whilst personal, can be so important. You don’t necessarily get information from your doctors that satisfactorily explains this. Hence the value of this forum.
I’m still experimenting with food intake and what types affect me. Sugar is an absolute no - it just seems to be in everything. No chocolate is a killer but doing my best. I suffer if I indulge this habit.
What do forum participants have to say about alcohol? I love a glass of wine or 2 but I’m thinking I may have to give it up??? 😥😥
Yes I am convinced my PMR was triggered by my first ever flu jab, which I was persuaded to have at beginning of covid. ( Iat 69 I had only ever had flu once as a student) Of course Drs have called it coincidence, however I know of 3 friends who also got PMR after flu jab.I had never heatd of PMR becore.
Mine was 2 yrs ago so I realise flu jabs change every year. I am never having a flu jab again. I reluctantly have had 4 covid jabs with some reaction but nothing as serious as PMR. Good luck. You will get better but I could have done without this as had to isolate all thro covid.
Bear in mind that most of us who have PMR had NOT had flu jabs - I hadn't had any jabs for 20 years except possibly a tetanus one - or PMR developed after a case of flu, shingles, or anything else for which you can have a jab. If the vaccine didn't trigger it, the next illness or life event that stresses the immune system would probably have done it. There is no single cause of PMR - it is a reaction when a single straw breaks the immune system's back and sends it into a tail spin.
Hi , I also was diagnosed with pmr after my first covid jab in March I still can't get below 15mg but rheumatology drop me by 5mg every time and it flares up they say I have to get off it , after joining thos site I've told them I will drop by 1mg monthly see how that goes . Mark.
well we could go back and forth on if Covid & vaccines are causing the sharp increase in PMR cases but I can only speak from my experiences (PMR immediately after phonetic vaccine) and what my rheumatologist keeps parroting that she believes when the dust settles there will be a new name for what I have and the other 5 younger male patients she is treating have PMR “like” symptoms which does not respond well to current PMR medication I.E. prednisone! I also weigh in the Pfizer web site which now lists PMR as a possible extreme side effect of their vaccine.., I like you had a lot of symptoms unable to get out of bed without assistance unable to shower or dress I also had some extreme swelling in my RT leg from hip to toes I was started at 50mg of prednisone dropped to 40mg after a week slowly down to 25mg but I can get no lower I have been stuck here for many weeks now we added methotrexate injections a couple 3 months ago but then I caught Covid a second time and had to stop them until I got over the Covid symptoms. I have since pushed hard to drop below 25mg but that only caused a huge flare sending me back to 30mg for a few days… wish I had some magical information my friend but hang in there I think they are taking a second look at PMR these days… if extreme cold helps we can exchange houses we are below zero here in MT I believe you are in summer? Take care
One friend went to rehab in Germany where they tried the cold chamber therapy on her - it might work for RA, it doesn't work for PMR!
No-one has said here that the jab doesn't potentially trigger PMR and in fact I think I was saying it was a possibility while many doctors were poo-pooing the concept - what we explain is that there are many apparent triggers but they are all final straws after a series of other insults to the immune system. But think about it - if a vaccine does it, what might the real disease do?
It sounds to me as if you possibly DO have a vasculitis triggered by the jab but not necessarily the PMR we talk about. PMR isn't the disease - it is the name for a set of symptoms that are due to an underlying condition and there are several well know ones. Have they done further imaging to rule out GCA and/or LVV (large vessel vasculitis) which both require higher doses of pred? Or a few inflammatory arthritides can have a very polymyalgic-like presentation - possibly more likely in young males. I don't ascribe to the arbitrary age restriction we come across far too often - nor the duration,
But there have been a few whose PMR appeared after a jab - and their journey with pred was short, months rather than years.
I think what is unusual about PMR symptoms is one of the 5 new male patients my rheumatologist is treating gets 5-6 hours of relief from jumping into ice cold water! Just the idea makes my body ache but 5hrs of relief would be priceless I need a safe east access place to try it! To date only the application of heat has helped! I woke one day with almost no PMR symptoms I hoped I too was going to be a short symptom PMR patient but the one day is all I got I have tried to reproduce everything leading up to that day in hopes of a repeat but no such luck as you know after awhile one gets pretty desperate lol..
I don't think I did - I had had PMR for 5 years without a diagnosis but as a scientist I didn't really consider any of the wackier ideas - I was more interested in what it was! Within 6 hours of the first dose of 15mg pred I could move without pain. It gives me a different view of pred maybe.
it’s the wettest spring/summer here you probably wouldn’t like it. Let’s swap in May/June. Interesting that Pfizer lists PMR as a possible side effect (that’s the jab I had along with a flu injection). My wife likes natural medicine and occasionally sees a Chinese Medicine lady. She is big into “fasting” to rid yourself of viruses. Has anyone tried this?
A book I have found very helpful for healing auto immune conditions is by Terry Wahls. It's called the Wahls Protocol and is all about giving the body the right food to enable healing. She discusses excercise too. I personally found it extremely helpful and empowering (my husband was diagnosed with giant cell arteritis in 2018 and was able to get off steroids completely after 13 months).
I just checked the Yellow Card reports and there are over 200 reports of PMR after covid injections. I think only 1-10% of reactions are ever reported, so it is likely there are many more people experiencing the same symptoms but they have not been reported or linked to the injection. You can search the Yellow Card data here:
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