New to PMR

[Gingershot]

I have been developing PMR symptoms over the last 3-4 months-stiff and painful shoulders, neck,hips and upper arms- and have been taking ibupfofen to manage symptoms. I am trying to understand what may have triggered this and would welcome any thoughts please. The only things I can think of are doing more exercise or a flu jab!

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Could have been the flu jab, for some any vaccination can be a trigger… but it is usually the last thing you can pinpoint. Your immune system may well have already been under stress [perhaps without your realising] and this was the final straw that broke the camels back. Many people are never sure why they have PMR, and to be honest it doesn’t really matter, if you are going to get it, you are going to get it..no point in ‘what ifs’.

Doesn’t sound as if you have been diagnosed, and long term NSAIDs [ibuprofen etc] is not a good idea… you really need Prednisolone and to be treated by a doctor.

If you think you have PMR, then maybe have a look at these for info -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Gingershot in reply to DorsetLady]

Thanks, unfortunately I don't think Pred is feasible as I have recently been diagnosed with osteoporosis so hoping I might somehow resolve this with Ibuprofen!

[DorsetLady PMRGCAuk volunteer in reply to Gingershot]

Well good luck with that then… but don’t bank on it.

Let us know how things go.

[Gingershot in reply to DorsetLady]

Thanks, I'll try Ibuprofen for a while and see if there is any improvement, so far it is helping so fingers crossed

[SnazzyD in reply to Gingershot]

Are they not happy to give you Pred with the backup of bone meds like others do routinely?

[Gingershot in reply to SnazzyD]

I haven't had that conversation yet but given my osteo is quite bad I wouldn't want to do anything to make this worse.

[Blondiblue in reply to Gingershot]

The medicines for osteoporosis are good. I've been on 3 at different times. They stopped my fractures even though I have never gotten off prednisone.

[PMRpro Ambassador in reply to Gingershot]

There are other ways of dealing with osteoporosis - and ibuprofen won't "resolve" PMR as you put it. The long term adverse effects on GI, cardiovascular and renal systems are considerable and PMR can last for years - many years in some cases. However - if ibuprofen is helping it does cast some doubt on a diagnosis of PMR since it rarely is effective.

[SnazzyD]

If I condensed all the suspected causes from posts over the 8 years I’ve been hanging around here, the list would be like Santa’s. However, top three in my opinion would be stress (particularly prolonged or big shock), intense physical work or injury and anything that triggers the immune system (infection or vaccines). Genetics will be pulling strings too.

If you do have PMR, normal non-steroidal anti inflammatories won’t help much as their scope of action in inflammation is limited. You need a strong, all rounder like Pred to control the inflammation. Just because you can buy NSAID’s over the counter doesn’t mean they are a safe long term solution.

[Gingershot in reply to SnazzyD]

Thanks, that's helpful, I would probably point to all of your top 3, stress of osteo diagnosis and waiting for treatment plus increase in weight bearing exercise, plus flu jab. Oh and yes I have the genetics too.

[Groggrim in reply to Gingershot]

Hi Gingershot, I, too, have the genetics in spades for autoimmune disease. We blame my maternal great grandparents as they were first cousins and both had autoimmune diseases and married and had two sons. My maternal grandfather had diabetes and RA and all four of his daughters had various autoimmune diseases, my late mother had three and I have two so yes, you are right. Genetics definitely play a part

[SnazzyD]

Full house!

[Gingershot in reply to SnazzyD]

Thanks!!

[Gimme]

A lot of folks in this group link the beginning of the PMR to a traumatic life event or prolonged stress. I would agree with Snazzy's top three, it just happens that I had a combination of all 3 prior to diagnosis. My flares certainly seem to coincide with a viral infection, though this has just made me realise that my most recent one was right after having had the Autumn covid booster. I need to check the dates. I can't think why I didn't link it before now. Thanks for this thread.

[Gimme in reply to Gimme]

I've just checked the dates and I had the covid booster exactly a month before my PMR symptoms flared again. Not sure if that is close enough to link the two events, or if they are linked, how long it will be before I start to feel better again. I don't think that I will have any more boosters. I stopped having the flu jabs already because they made me feel so awful for some time after.

[Chiavenna in reply to Gimme]

My first PMR symptoms appeared a month after a Covid booster and flu shot at the same time. I had no side effects from either. I am not a vaccine skeptic and didn’t equate the two until I starting reading more about the possible connection. I am considering skipping Covid next time. I am tapering prednisone and currently at 7mg. I use Tylenol if needed for occasional pain.

[PMRpro Ambassador in reply to Chiavenna]

If the Covid jab might have been the final straw that triggered the immune system into derangement - so could the flu jab, the shingles jab, or any of the disorders that vaccines are designed to mitigate. Many of us on the forum had PMR long before Covid. I personally had had no flu jabs at that point, though when I think about it, I had had flu, proper full-on flu, a couple of years before. It is no single thing - it is an accumulation of a series of events through life that have impacted your immune system and finally a single factor is enough to tip the scales and cause trouble. It can be pretty much anything - and it may not be that obvious at it can take time to build up to symptoms.

[Chiavenna in reply to PMRpro]

Thank you! I needed to hear this. I tend to look for that one thing I can point to instead of looking at the bigger picture.

[Buonarensis]

Hi gingershot,Ive had pmr since december after a particularly stressful period.Im relying on ibuprofen and omeprazole as Im reluctant to take cortisone despite GP advice.They dont remove the symptoms but I get periods when I can do normal stuff and I certainly know when I taper them off.I don't know if this is a good regime longterm.just crossing fingers.Wishing you all the best.Rose (buonarensis)

[Gingershot in reply to Buonarensis]

Thanks, I am finding my symptoms are manageable on Ibuprofen and omeprazole at the moment but not sure like you about longer term use. I am hoping the inflammation miraculously goes away

[Bcol in reply to Buonarensis]

Assuming your PMR diagnosis is correct, then I think you are probably just delaying the inevitable. The only medication, in the UK, that will manage your PMR is Prednisolone ( Pred). Long term use of Ibuprofen is not recommended and whilst the inflammation is not being dealt with it is travelling around your body and getting stronger. Taking Pred will not only manage the inflammation but is very likely, at the correct dose, to give you a far better quality of life.

[DorsetLady PMRGCAuk volunteer in reply to Buonarensis]

Agree with  Bcol long term use of NSAIDs [ibuprofen etc] can cause damage, especially if you are buying over the counter, whereas if you are on prescribed Pred then that is at least being monitored by doctor.

[JessJess21]

hi I wondered about this for ages. it came after a prolonged period of intense work stress. i think its mix of genes and social factors. i don't believe its injections - but that's just me. i did get an infection just before but i think it was coming on before that. ultimately it doesn't matter- get the right treatment - mine has taken an age - i was severely disabled out of the blue`! only 12 months later i'm just getting some relief but slow and still disabling. be kind to yourself and if you can afford good physio - that will help. jess

[Groggrim in reply to JessJess21]

'if you can afford good physio - that will help'

I so agree but private physio where we live is prohibitively expensive, £70 a session and £120 for the initial consultation and session. I have had NHS physio in the past for frozen shoulders and it did help, so I am doing those same exercises, albeit more gently.

[Estellemac]

In my opinion the most likely and common cause of PMR or GCA is stress. Not one specific thing. For us unlucky ones any type of stress and your body says its had enough and starts attacking itself. We like to blame a specific action, time or event as its easier to accept and process that one thing. This is a condition that changes life as you knew it . Your not who you were anymore. You can't do the simple things you used to enjoy. It is debilitating and that loss of independence is soul destroying for some. The effect it has on your mind is as bad as it has on your body. Look at ways of doing things differently. Its not forever. Just seems like it at the beginning. There as some good news stories on here and the PMRGCAuk website with positive thoughts from people on here to help you cope. I hope you feel better soon and get the answers you need from this supportive community.

[Stills]

note Ido not have PMR but Stills Disease which manifests as rheumatoid disease. Diagnosis made aged 17 in 1979. After years of relevant medicine including steroids I entered a period of almost remission and weaned off the prescribed medication relying instead on OTC products like NSAIDs and codeine until my early 60s when I became ill and stomach issues were discovered caused by self medicating with inappropriate medications. I think my advice is clear.

[Marmille]

I got pmr a week after flu vaccine. Kevzara has been a life saver. Down to 3mg of prednisone continuing to taper

[Seal49 in reply to Marmille]

I'm slow reducing my prednisone and currently at 8.5 mg. How long gave you been on kevzara and any side effects or issues with it.

[Marmille in reply to Seal49]

Zero issues. I was on 10mg when started January 6th. Shot every two weeks. I say takes about 8-10 shots for it to get into your system

[Seal49 in reply to Marmille]

Thank you

[Marmille in reply to Seal49]

Absolutely. I dis not find tart cherry and other supplements helped me for inflammation. I did a grounding mattress pad and that has been great for me as well. Sleep like a baby and think helps inflammation

[Sandmason]

Mine was 2 years after covid booster with zero other jabs, I didn't associate it. My father had PMR at about my age so I knew what it was.

For me it was not stress, it was a sudden huge increase in exercise, addictive pickleball!

Mine demanded steroids as I literally couldn't turn over in bed. They really aren't that bad. I have osteopenia, 103% of age and sex matched people. I use just dietary calcium, vit K2, collagen, magnesium.

[Groggrim in reply to Sandmason]

Hi 👋, last year I had Covid in January. I never really recovered from it and the GP was talking about 'Long Covid'. Then in August last year I was diagnosed with suspected PMR and given a trial of Prednisolone. PMR is in my family history so, like yourself, I knew what it was. My body seemed to like the Prednisolone until the GP got me doing a silly taper with large drops too often. I got in a bit of a muddle with the dosing until I found, and joined this forum. A few ups and downs and hiccups but I seem to be doing better now and I am very grateful to everyone who has advised and helped me. They have been very patient and they know who they are 💐

All the best to you Sandmason. GG.

[Cobnut]

As someone who has battled GCA for nearly ten years and got down to 6mg I would like to say that I underwent a third endoscopy two weeks ago and before they would do it I had a 30mg infusion of Cortisol. Apart from being particularly horrible my body thinks it enjoyed that extra dose and wants more prednisolone. I must now reduce slowly again. Stress certainly upsets the adrenals.

[KCRoyals]

Hi, welcome to the club. Pred is a life saver. Been on it for 16/17 years and has not had any kind of detrimental effect. To help with Osteo I have been on 1g of Adcal ( VitA and Calcium)to offset it. Just don't listen to time scales for how long it will last. I was told about 2 or 3 years but am still living with it.