PMR or not PMR?: Hello everyone. I was diagnosed... - PMRGCAuk

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PMR or not PMR?

Pippz20 profile image
27 Replies

Hello everyone. I was diagnosed with PMR last summer without being seen due to COVID. I was 51 at the time and put on 15mg go pred by the MSK consultant I had spoken to. My GP then told me to taper as fast as I could which has left me off work in the midst of an awful flare up. My GP referred me to a rheumatologist who, again without seeing me, has written to my GP saying I an fat too young and showed no inflammatories in my bloods and therefore don’t have PMR and to go for an MRI scan and lots more blood tests. This has left me worried and anxious. Has anyone else been so young and with no raised inflammation in their bloods as I am convinced I have PMR. I am now on 6mg by the way.

Thank you

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Pippz20
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27 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

Couple of points -

NICE advice, see picture - says from 40 years onward (also see link)-

cks.nice.org.uk/topics/poly...

Were your bloods done once on Pred - if so, of course they are within normal range , just shows the Pred is doing what it’s supposed to - ie. reduce inflammation levels - doesn't mean you don’t have PMR. If they were done before diagnosis - up to 20% of patients don’t have raised markers .

Why did GP tell you to taper as quick as possible - wrong advice you taper to find LOWEST dose that controls your symptoms.

What specific issues do you have at 6mg? Can you recalled last dose you felt okay at? If so, return to just above that and you may catch it.

Sounds as if MSK guy is the only sensible one!

PMR - NICE
Pippz20 profile image
Pippz20 in reply to DorsetLady

Thank you. Bloods were done before steroids. Going back for more bloods tomorrow and waiting for mri appointment. I just wish I could see someone as I have classic PMR symptoms although my pain is worse in hips than shoulders and pain in shoulders came later than hips and right shoulder first with very intense pain. Left shoulder not too bad.Gone up to 10 mg and seems to be settling but due to go back to work in a couple of weeks(full time and very busy rushing around job!) and not sure if I can due to the fatigue and lethargy.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Pippz20

Unfortunately too much credence is placed on blood markers - symptoms are always the key, but some doctors (even those that should know better) seem to have a blind spot if the readings are aren’t high.

Hope the 10mg continues to work....and that your GP will help in providing you with sick notes.

piglette profile image
piglette

I just don’t understand why some doctors are so incompetent regarding PMR and steroids.

softekcom profile image
softekcom

Almost identical - I was diagnosed over the phone in August last year at the age of 50. I tapered down to 5mg and am in the middle of a flare and have just gone back to 10mg.

Pippz20 profile image
Pippz20 in reply to softekcom

I feel your pain. It is taking me some time to come to terms with the impact this is having on my life. Am even considering going part time which wasn’t part of the plan!

PMRpro profile image
PMRproAmbassador

I was still 51 when the first signs of PMR started in the spring and then built up over the rest of the year. I wasn't diagnosed until nearly 57 - and even then the rheumy disputed it, Age was never mentioned though - except when the GP intimated I had to expect aches and pains "at your age"" My blood markers were never out of normal range - though they were pretty raised for me at 16-18 for ESR when it normally runs in low single figures. It is more common in younger patients.

All the guidelines say over 50 - although that doesn't mean it can't happen in even younger patients. And of course, when they won't say it is PMR in younger patients, the average age will always be skewed higher.

Daisyfield profile image
Daisyfield

I was diagnosed PMR in March 2018 at age of 51. No blood markers up ever.

Bilateral shoulder pain and muscles aches especially in quads

Responded to 15mg. Reduced over 18monthd with a couple of flares.

I saw rheum last December and he said I never had PMR but couldn’t offer alternative dx.

My gp thinks it is/was PMR.

I am not on steroids. I am achy morning and night and weaker than I once was. Reluctant

To go back on steroids as now managing. But I did need them for the pain before.

Hopefully in slow remission.

PMRpro profile image
PMRproAmbassador in reply to Daisyfield

This "you never had PMR" line infuriates me - it was something and it presumably had the symptoms we use the term polymyalgia rheumatica to describe. There is an underlying cause, if you can't positively identify a different one and it responds to pred, the differential diagnosis is PMR.

Pippz20 profile image
Pippz20 in reply to PMRpro

That’s what they MSK guy said to me. I had had lots of blood tests, x ray and all normal and as soon as I was on the pred I was fine until now!I have upped my dose again and it seems to be working but it has taken a couple of weeks and I still feel exhausted!

Hoping I will be back to ‘normal’ soon!

Daisyfield profile image
Daisyfield in reply to PMRpro

I know - it feels like my symptoms are being dismissed or denied. At the beginning I could barely move. Now I’m still not right. There was even the suggestion of ‘at my age’ !!!!! Had to remind rheumy that I had done an adventure Marathon the year before - biking 80 miles, running 20 and kayaking 2 miles - I wish my body could get back to that.

TheMoaningViolet profile image
TheMoaningViolet

I was 52, but my markers were somewhat raised. However, I made sure they did every test under the sun and my rheumatologist sent me for a PET CT partly because she could and she does it for every suspected PMR patient and party because she could see my reluctance to accept the diagnosis and the treatment. As it happens, given my symptoms, almost any other diagnosis would have been worse. My symptoms were always worse in my hips and at the top of my spine, (by the time I had my PET scan the pain had descended down my spine); I was always able to do everything with my arms and shoulders, but when walking I felt as if my legs were tied. I hope you get the answers you need and start to feel better. Busy job will be difficult to manage, so good luck. Vx

hello Pippz20, sorry to hear how you are being passed the buck whilst suffering so much. I was bounced around Circle MSK from April 2018 to August 2019 till I was literally crippled nd immobilised in agony. After £1000's of NHS money being wasted on protracted tests and departments, keeping the staff of Circle MSK gainfully employed and generating lots of spondoolies for the precious Share Holders, which is its main function, ... (yes my personal experience has made me a bit bitter as I watched by life evaporate), I eventually got in front of a good listening Physiotherapist who, after hearing my symptoms and examining my limitations, immediately diagnosed PMR and refereed me to a Circle MSK Rheumatologist 2 weeks later. He said I did not have PMR and the physio should not have referred me to him. He prescribed a pain management course, Gabapentine (which is useless for PMR) and mindfulness excercises, along with hypnotherapy!!!!! If i refused to attend the course he'd refer me back to my GP to begin all over agian.In tears at home my hubby decided I'd been bounced around long enough by Circle MSK, and we paid £250 of our pension pot to go private on 28 August 2019. That Rheumatologist diagnosed PMR on my sypmtoms alone; my markers were normal as they are in 20% of cases, he prescribed Pred 20mg and I was skipping around my garden few days later in bare feet, miracle cure. If it quacks like a duck ...... I am that duck.

You are only young and I pray you get your diagnosis and perscription to manage your pain effectively so you can have a long and productive life. It's a mine field out there, and this forum is your best weapon in getting you to safe harbour. wish you calm waters soon, Polly

Pippz20 profile image
Pippz20 in reply to Pollynolongerinagony

Thank you Polly. It really is having a massive impact on me physically, emotionally and potentially financially as I may have to go part time which will impact on life now and my pension.It’s also scary that the doc is looking for something more sinister but my symptoms are classic PMR.

But at least today the sun is shining!

PMRpro profile image
PMRproAmbassador in reply to Pippz20

Be grateful that the doctor IS looking to make sure it isn't one of the less appealing options - because ruling them out is an essential part of a differential diagnosis. Many GPs don't bother.

Rottsuzi profile image
Rottsuzi

Hi , exactly same thing happened to me I went at 48 and two doctors actually laughed and said I was too young and it was menopause so 9 months later seen a doctor that put me on 15mg of prednisolone and I have been tapering even since . Had a rough weekend with headache and sore jaw and face and doctor now has up the preds to 30 and I finally see a rheumatologist for the first time tomorrow so fingers crossed I get some help tomorrow.

It’s a very difficult road to be on but hopefully there is some light and he’s me thinking I was a very healthy person who always exercised and eat very well .

Take care hope you get it sorted x

Pollynolongerinagony profile image
Pollynolongerinagony in reply to Rottsuzi

Hi Rottsuzi, may I ever so gently tiptoe onto your comment about a saw jaw , flashing alert up to me. Only here to care, share and not scare. My friend had PMR which morphed into MG Myasthenia Gravis, which weakens the volunary muscles you choose to move like your jaw when chewing jaws become weak and achey. Eye muscles can cause droopy eylids and eye muscle mis co-ordination causing double vision, throat muscle weakness cause problems swallowing, larynx muscles trouble croaky voice and lip and tongue muscles and weakness cause difficulty speaking.Then you've got arms legs weakness etc. MG usually presents in 40 year old women. Just wanted to give you the heads up as quite few PMR and MG symptoms crossover. MG might be worth a Google just in case. wish you a speedy diagnosis and prescription, and a speedy recovery. best wises Polly.

Rottsuzi profile image
Rottsuzi in reply to Pollynolongerinagony

Thank you polly I will definitely look into this I’m hoping the rheumatologist gets on top of it all tomorrow .

Pollynolongerinagony profile image
Pollynolongerinagony in reply to Rottsuzi

I hope so too, but please be aware , in my own experience, lots of departments are monocular, in other words they do not see nor recognise other than their own, so a rheumy might not see or think of a neuorlogical disease like MG. They cant be expected o know everything, to be honest, so may focus on thier own field. I'm saying little prayer for you, good luck, Polly

Hosers2 profile image
Hosers2

If you have been taking any Statins (for high cholesterol) you may want to try stopping. I had all the symptoms of PMR. Shoulders that doctors said I should have rotator cuff surgeries. Wrists and hand frozen up and aching. Doctors recommended carpal tunnel surgery. Hips weak and aching: get hip replacement surgery. I investigated all my meds, and discovered others who had these same symptoms, including those who had gone through these surgeries. So I quit Simvistatin, cold turkey. Every single symptom disappeared within 25 days.

Yes, five years later, I got actual PMR, which I blame on my (almost being forced) taking Simvistatin.

Pollynolongerinagony profile image
Pollynolongerinagony in reply to Hosers2

Oh my goodness Hosers! you poor thing going through that nightmare, thank God you found the cause yourself and recovered.... your experience should be front page news accross the world. How much time wasted and cost to NHS, but worst of all pain, trauma, hopeless and helplessness, and destroyed years you will never get back. Incredible how much you suffered before solving the mystery yourself. I'm so happy you're a true survivor. The Pharmasutical Industry is like an insatiable juggernaut , getting people hooked on one thing that turns into the Medusa of all many headed monsters, all generating income for the voracious shareholders. thankyou beyond words for caring and sharing. I'm grateful for your help and advice . Polly

Hosers2 profile image
Hosers2 in reply to Pollynolongerinagony

Polly; I’m in the US. So it didn’t affect NHS. My private insurance (not ObamaCare) pays everything but the co-pay (about $20.00 US) per visit.

What concerns me, is how much effort doctors, worldwide are pushing these useless medications. They must be making some big $$ to keep the scam going for the Pharmaceutical companies.

My doc pushes the flu shot every time I see him. After I quizzed him about it, he said there were only three reported cases of the flu in Utah last year. So I asked him why he wants me to get a flu shot, if the flu is virtually absent here. His reply was that people were not going to wear masks forever.

When Big Pharm allows medication for simple toenail fungus to be sold, I will start listening to them a bit more. But imagine how much money they would lose if they couldn’t sell their useless fungus creams and ointments.

Pollynolongerinagony profile image
Pollynolongerinagony in reply to Hosers2

totally on same page with you Hosers2, the number of people who stopped Simvastatin and all their symptoms disappeared 25 days later is mind blowing. The share holders are raking in billions off the backs of meds crippling people and generating more diseases needing life long meds. This is why we must use the Yellow Card Scheme worldwide systems and Registers to empower we who are pollaxed by drugs and vaccines, to be fully aware of their being triggers to some of us, so we can make informed choices about out medical paths. Then we can give many of these 'triggers' the big Red Card! once and for all, we are not safe, till we are all safe. keep on keeping safe, and very best wishes and thanks so much for caring and sharing and not scairng.... , Polly

Ash8 profile image
Ash8

Hi, Similar to you, I was 50 when symptoms started, just turned 51 when diagnosed over 3 years ago, and my pre-pred bloodwork showed no inflammatory markers. I most definitely have PMR. I did have lots of other bloodwork, whatever was recommended, to rule other things out. Wishing you well.

Ladyoak profile image
Ladyoak

Hi Pippz20, I feel your anxiety, it took ages for me to get the final diagnosis and at 55 I felt young to have this. I was started on 30 mg of pred but after a year I am down to 8 mg. The weather gets me when it is cold, so now I am too scared to lower my dose. I feel scared all the time because I have lost weight during my journey.

Pippz20 profile image
Pippz20 in reply to Ladyoak

I wish I could loose weight. Before starting with PMR I had lost 2 stone and have regained a stone since starting on the pred. I am prone to gaining weight anyway and by not eating or severely restricting carbs and intermittent fasting am just about managing to maintain or loose the odd pound. It so upsetting and personally is having a bigger impact on my mental health than having PMR in the first place!

PMRpro profile image
PMRproAmbassador in reply to Pippz20

Have you kept a food diary to be sure just how much carb you are eating? Very often when people struggle it is because they are not aware of where the carbs are hiding - fruit is a very common culprit! Healthy maybe, carby, yes. Both Snazzy and I have to get our carbs right down to keto level to lose weight and for me losing a pound in a month was good going. But I lost 35lbs altogether over 18 months. It is discouraging but you do get there eventually.

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