PMRGCAuk
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I am new here - awaiting reconfirmation of PMR diagnosis from Rheumatologist after GP already called it that

Hello everyone, I was wondering if there were other “young” patients here - tomorrow is my 42 birthday and on Wednesday I expect to get the diagnosis of PMR confirmed by a rheumatologist (gp already ran test and told me this is what I have).

Now since the onset of the severe pain and stiffness some 6 weeks ago, I have had better and worse days and some days my hips are worse than my shoulders - is this normal?

How long are “flares” lasting in general?

Thanks for any insight!!

Sib

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Hi sib

This is a good place to come for info and if you have read some previous threads you will see we have members who are much better informed than me. Just wanted to say hi. There have been younger members and I was 55 when dx. There is no definitive test for PMR....probably meant your symptoms fitted and your inflammatory markers in blood sample high. The main way they dx is by prescribing predisolone or other steroid to see if there is relief if symptoms within 1 to 2 weeks...was hours for me. You are not clear if you are taking pred or I am woolly brained. I think I would still be asking for some further investigations that might cause similar symptoms. As I say others with more brain power and info will be along to help....oh and happy birthday 🍰

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Hello Sybylle75,

So your date of birth is 1975 not your age. Getting PMR so young is rare but not unheard of. Thankfully it is a disease with a beginning and a middle and an end and luckily you have landed in the best place, for everything you will ever need to know, right at the beginning. Welcome to this friendly, informed and supportive forum.

Have they not given you Prednisalone yet?

If not you must be suffering a lot of pain and stiffness, poor you!

Is your diagnosis being based on blood tests?

Let us know a little more about you?

A flare is a word we use to describe a definite return of symptoms if you reduce your Pred dose too quickly or by too much. You should expect to stay on a starting dose of 15 to 20 mgs a day for about 6 weeks. This will enable your inflammation to settle down completely before you think of reducing your dose. Please seek advice on here about tapering your dose when the time comes. A lot of people suffer unnecessarily through odd reduction plans suggested by inexperienced GPs. Although to give your GP credit, he diagnosed you even though you are not typical i.e. Over 50 years. of age.

If I was diagnosed today, I would keep a symptom diary. It will make managing PMR much easier as time goes on.

Happy Birthday for tomorrow Sybylle. This is not the end of the world! My guess is you've been suffering one way and another for a long time. Relief is at hand! 🎈🎉

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Hi Sibyelle75,

Welcome, yes 42 is young for PMR, but guess you’ll find out for sure on Wednesday.

As you asking about flares, does that mean you are on Pred and think you are experiencing one? Simple answer to how long does it last - until you take enough Pred to get control of the inflammation again! It doesn’t normally go away on its own.

Have a read of attached it may help you to understand PMR and it’s journey a little better. Please come back once you’ve seen Rheumy and let us know the outcome.

healthunlocked.com/pmrgcauk...

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Hi Sib, I was diagnosed with PMR about 2 months ago now and am 47 years old. I'm still getting my head round the illness so I can't offer any advice but thought you might appreciate a quick 'hello' :)

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"gp already ran test and told me this is what I have"

He cannot be sure - the blood tests (ESR and CRP) he did can only show if there is inflammation present and that can be due to all sorts of things. The symptoms we call PMR are due to another underlying cause and there are quite a few. In our case it is an underlying autoimmune disorder that causes our immune system to attack our bodies by mistake, thinking it is "foreign". But you are heading to the right place to get investigations done to rule out other potential causes.

I wouldn't really describe what you have at present as a "flare" - a flare is a return of symptoms after they have been well managed on dose of corticosteroids. You are started with a dose that is high enough to relieve them in most patients (although some need more than others) and then you taper the dose slowly to find the lowest dose that gives the same result as the starting dose did. If you overshoot the mark then the symptoms will come back - a flare due to going to too low a dose. Or sometimes you can have a flare because the activity of the underlying autoimmune disorder causing the symptoms has increased and the dose you are on is no longer enough.

I do know a few people in their 40s who have been diagnosed with the PMR we talk about - but I also know others in their 40s whose GPs thought it was PMR but eventually another reason for the symptoms was found. It matters because for the other causes there may be better drugs than pred.

Whatever the rheumy says - please come back and tell us. And I do hope you are able to enjoy your birthday despite PMR symptoms! Perhaps you will get a late brithday present.

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Thank you everyone, maybe FLARE was not the right word as I am not yet on on anything - I take Voltaren and Paracetamol with little help... GP did not want to give any meds before I get to see the Rheumatologist...

I was just wondering if it was/is normal for PMR (without drugs) to have days where you feel much better than others - if this is the "normal" presentation/cause of the disease.

For more background:

I have been very fit, going to CrossFit 4 times a week for the last 2 years,... over the summer I had to cut back as we are renovating the house, work was intense (I organise health care meetings) and the kids (5 and 7),.... well you get the gist, something had to give - so CrossFit it was.

The pain then one day came totally unannounced and stayed since. I have gone to the Chiropractic a few times as the pain and stiffness in my Shoulders was just mindbogglingly to me - I thought something got pinched or similar... the sessions were ridiculously painful and did not provide a lot of relief.

I am now trying to change my diet to an AIP - missing dairy the most, but I want to stick to it for 30 days and see if I feel different... I guess if it does not help, it won't hurt either to get the junk out of my diet...

From a diagnosis, it was based on the Sed Rate and CRP which were both elevated - together with my un-expainable shoulder and hip pain/stiffness, the diagnosis was formed by the GP.

I shall update once I have had my appointment - fingers crossed that there is soon something to take the sting out...

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A remarkable thing happened to me when I retired. My gift to myself was a trip across the Pond to visit my cousins. I left the day after I finished working, and my first day as I was too early for my hotel room I packed all my valuables into my backpack, along with a water bottle, and spent the entire day walking in London. I had been undiagnosed with PMR for about six months at this time, although I didn't know it yet, and was sure I would be a real mess the next morning. Oddly enough I felt better the next day, and for the entire week away, than I had for the previous half year. When I returned home to all the stresses I'd left behind things came back in a big way. Stress is a huge player in how the disease is manifesting, both before and during treatment and may be one reason why some days are better than others.

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Yes - perfectly possible to have good and bad days and for most people the bad days tend to follow a good day where you decided you felt well enough to do more to "catch up". In PMR your muscles are intolerant of acute exercise - and that doesn't change even when you are on pred.

And yes - chiropractic can be very painful when you have PMR. So can massage. Some of us have found some relief with Bowen therapy - not for the PMR itself but for the things we call "add-ons" - since it is a very gentle therapy. But it can leave you feeling a bit "beaten" after a session too if they did a lot.

Your GP's diagnosis is perfectly fair on the basis of the symptoms and blood tests - but you ARE very young and there are rheumies who simply will not accept PMR in young patients. The guidelines say "over 50" - and the "average age" at diagnosis is over 70. That, of course, does NOT mean younger people don't get it. But that seems to escape their viewpoint.

So how you will get on with your rheumatology appointment remains to be seen. I'm just telling you this so you don't descend into a pit of despair IF your rheumy disdains your GP's opinion, they may not. But it is a possibility. So don't minimise your disability and write a clear list of symptoms and time line before you get there. I'd also suggest taking someone or even recording the consultation - tell the doctor it is so you don't forget things or get confused. Smartphones are so handy!

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Update: was at the Rheumatologist yesterday and he is rerunning the blood tests (sed and cpr) with a bunch of other tests such as Lime disease, some virus and a bunch of things - got different pain meds for the week long wait so I will update again then

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Sounds like a good start.

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So, rhumy said by excluding any other disorder that it looks like PMR :-/

He gave me a steroid shot in my butt and I felt better today - less stiff in the morning, still a bit achy however. Is this normal? I was expecting or better hoping that with a shot, I would feel like my old self quite quickly - but I guess it takes time to fight the inflammation... have to go back to the doc on Friday next week and he told me that if the short worked he would start me on 15mg Prednisone for 2 month and then reduce - sounds standard, right?

He said that you can be cured of PMR - is that true? On different forums it seems that this is something that will keep coming back to bug you further down the road - or did I misunderstand something?

And lastly, until a few months ago, i was quite a dedicated CrossFitter - is heavy lifting and intense work outs still possible? While on Prednisone? Is anyone else working out? Sorry for all the questions!!

And really the last question, has anyone changed their diet to cut grains/gluten, dairy, eggs,... to follow the AIP plan? Does it really make a difference for you? I started but am struggling with the food choices left that are not considered inflammatory...

thanks

S

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"He said that you can be cured of PMR - is that true?"

No it isn't true - "cure" implies there is a way to send the underlying autoimmune cause of the symptoms into permanent remission. Like rheumatoid arthritis or lupus there is no cure for PMR - it can be managed fairly well using corticosteroids for most people until the underlying cause burns out and goes into remission - unlike RA and lupus it does tend to do that more often than not and for the majority is permanent but the potential remains for it to reawaken and cause a second episode at some later point. This seems to be more common amongst patients whose doctors force them to reduce quickly and stop pred inside a couple of years. Those who are left to reduce at their own pace in up to about 5 years usually seem to get off pred for good.

No, his steroid shot isn't really normal - most doctors would hand out a 2 week trial of oral pred. And the oral dose you need may be 15mg but it might also be a bit higher, up to 25mg/day as the starting dose is the figure quoted in the most recent guidelines.

The autoimmune part of the PMR is still there, chugging along in the background and attacking your body tissues, causing inflammation which leads to the pain and stiffness. It's a bit like the flu - the cold rememdies make you feel less awful but you are still ill. Most of the people who did sport of various sorts reckon they manage about 50% of their previous level, sometimes more. But they almost all had to go back to a very low level, as if starting over again, and build up slowly. If you don't you run the risk of suffering severe DOMS as a result as your muscles are intolerant of acute exercise and unable to repair themselves as normal so it can last weeks rather than just days. How I did it was just a very short session, really just 5mins or so and with low/no weights and low reps, and see how I felt next day when I rested. Then I added a tiny bit each time. Everyone is different but there really isn't any point in trying a normal workout and discovering you can't move for a couple of weeks! I built up to the point I just felt it next day, went back to the previous level and stuck there until I felt really good - but always with a rest day. Then I continued with a small build-up, rinse and repeat.

There are people who will claim the AIP works, I know of 2 on all the forums I'm on - maybe it does but can YOU stick to it? If you are already struggling then it will get worse and worse. I cut nightshades - made no difference except my diet was more restricted. Same with gluten - I was gluten-free in the early days of PMR because I have an allergy to something in the wheat starch in the wheat used for highly commercialised stuff. I can eat rye, spelt and kamut so it isn't gluten Didn't make much difference.

Cutting carbs drastically has helped many of us avoid pred-associated weight gain and it also reduces the risk of developing pred-induced diabetes. I lost 35lbs of PMR and pred-associated weight while still on between 10 and 15mg pred. That is much simpler and does help a lot of us, many say they can tell when they eat carbs, especially refined carbs and sugar which are quite pro-inflammatory. And of course that also reduces the gluten in your diet - no bread, cakes, biscuits and so on. Adding oily fish to your diet probably helps, turmeric and ginger in cooking too.

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So, seems I don’t have PMR afterall as the steroid shot did not work like magic :-( new target diagnosis is AS and I’ll have an MRI on Tuesday... I am happy that my rhumy is inquisarive and wants to know what the cause of my issues are, but the “slow” process from seeing him every week to 10 days is a bit of tourtour... I want to know what the issue is so we can start treating it and I can get on with life...

Anyway, many thanks for all your support here!!

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The steroid shot not working like magic isn't much of a rule-out - but at least he is looking for other potential options. Some people need more and longer on pred to get a good result - but of course there are some rheumies who then say it is not PMR for that reason.

Good luck - and don't feel you have to disappear. If you have the same sort of problems we have then the advice here for manging them still applies.

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