Hi folks
Anyone here been dx with polymyositis?
My rheum said not PMR but no differential dx given. I have muscle pain mainly girdle but my biceps both sides are now really weak. I am generally really weaker than I was. I was fit 51 year old.
Looking at dr Google (I know a terrible idea) my symptoms might fit with polymyositis
Any thoughts?
Morning Daisyfield - have you checked out the MyositisUK forum on Healthunlocked? It’s not as “active” as this one though. Sorry no advice but hope you get sorted, so frustrating. All the best.
Hello there, have you been seeing the same Rheumy throughout and is their basis for no PMR solely on the low inflammatory markers ? What is their next step? What tests have you had to try to get a differential diagnosis? There some specific ones for myosotis as you probably know by now. However, I have to say that the effects of steroids, time and a very curtailed activity regime shouldn’t be underestimated, even by people in our age group. Unless there’s something I don’t know, it sounds like there needs to be a bit more interest and perhaps a second opinion needs to be had.
Thank you. I’ve only seen one rheumy in 2.5 years. He said not PMR because normal bloods and age (I know!) but I’m not sure I fit fully with PMR. But I feel dismissed. Because I don’t look too bad walking in to the clinic I must be ok ! But I’m not. Some friends older than me did a long 20mile walk I would have joined but now I just can’t. I feel disabled. But probably look ok. I’m so much weaker. It seems bucket medicine to go on steroids without further tests but I don’t know what tests are available
I don't think anyone on the forum has polymyositis. There is basically only one real easily identifiable difference between PMR and polymyositis since the presentation can be very similar - and that is that in the blood tests a muscle enzyme called CPK or CK (creatine phosphokinase) is raised in polymyositis but not in PMR. There are other more complex tests. There are also tests to identify autoantibodies associated with it - and so far they don't have any that are associated with PMR. But if the CPK is raised - it probably isn't PMR.
On what grounds is the rheumy saying "Not PMR"?
Thank you. The rheumy did a big raft of blood tests. (I haven’t got the list and will ask) but my bloods have always been normal - not even slightly near top end. I feel my main symptoms are generalised deep aches of especially biceps and quads and back muscle ms up near shoulders. Shoulders aren’t too bad. I ache mornings and evenings more. I have little strength - feels like muscle weakness and no stamina.
I’d like more tests before going back on steroids.
No reason why your age or normal range ESR/CRP should rule out PMR - as you well know.
Probably the best option for ruling PMR in or out is a PET-CT scan while you are suffering symptoms and not on any pred. Trouble is they are expensive, not universely avaiable and mainly kept for ?cancer patients. But another opinion is probably called for - even if it has to be private. And you do need to get your blood results for yourself if you can.
I think it’s time to start asking questions and get as much info as you can such as printouts of blood results etc. Your doc really should be telling you what they are looking for and what they are putting their money on in terms of diagnosis. Lots of useful blood tests will only be done if they are requested and won’t just come out in the wash no matter how big a raft of tests is. Nobody should be left languishing with no information but often people have to start advocating for themselves in this game.
PMRpro - interested reading above comments from Daisyfield + your good self.I posted thread here 2020 re not feeling that well which fell on deaf ears with my long time Rheumie so sought 2nd opinion.
Bloods ordered revealed CK levels (Aug 2020) were 620. This particular Rheumie went on hols the week I consulted him so no followup ever occurred. He knew I was seeking 2nd opinion but thought followup would have been in order.
My GP did not know enough to help me & admitted as such so theoretically never had any answers.
Since Jan 2021 I've been juggling other health issues but now see my way clear to address CK levels.
Back with my usual Rheumie & will follow up & whilst levels are coming down (264) they are still not normal.
Comments from Lab re current bloods of last week & present CK level as follows:
Unexpected elevations of CK are usually due to exercise, muscle trauma or medication (eg statins, ARB). Consider hypothyroidism, viral myositis, alcoholic myopathy, fever, polymyalgia rheumatica, coeliac disease. Rarely, inherited muscle, CNS or metabolic disorders may be the cause.
Sorry this is long winded - don't take statins, nor any alcohol, my hypothyroid within range so I am at a loss - my legs like lead weights some days but had put this down to deteriorating knees?! Who knows??
Not impressed with a doctor who didn't address that raised CK! I'm also rather confused at the lab mentioning PMR - because I have never seen anything suggesting CK is raised in PMR, it is raised in MIMICS of PMR so is used as a rule in/out.
~The 2nd opinion Rheumie should have followed up considering he ordered the blood test - maybe I am expecting too much.I see Cardiologist tomorrow to sort b/p issues & have printed off original link you kindly posted (MedlinePlus) when I asked abt steady rise in my CK levels in 2020.
I've noted in that post 2020 that I mention my levels 2017 were 207.
I will do some gentle pushing because I am none the wiser & I pay dearly for guidance & knowledge from these professional folk ~
My rheumy said not PMR the first time I saw him. I think because one side of my hips/ thigh seemed worse at the time. Blood tests were unremarkable. I feel a lot weaker. Can’t reach for things. Can’t do up a bra. ( just found marvellous pull on crop top bra in M and S - thrilled !) Have no strength in my wrists now and I was always so pleased about how strong I was. Now I feel quite pathetic with ring pulls and twist tops. Getting out of a bath is a challenge ! But ive found a way to sleep now without waking up with aching hips and I no longer feel fluey or permanently depressed so I feel like I’m improving. And I’ve tapered off pred. So why does your rheumy think it’s not PMR I wonder ? What meds has he given you ? I had to look up polymyositis but it looks like pred is still the medication of choice.
Thanks - I’ve tapered off pred but I’m not right. They think not PMR cos no raised bloods. I did respond well to steroids 2.5 years ago. But loads of inflammatory diseases respond to steroids. So I feel I want more answers before having them again.
Please keep me posted as I’d be interested in what you learn. My ESR rate was normal and my CRP markers less than 10. 8 I think but now reduced. However I miss my strength and lack of energy. I can’t walk the dog much more than 2 miles without needing a 2 hour nap ( not so long ago that I used to climb mountains ). I’m grateful to be feeling better but I’m not right either. I feel my condition is still grumbling along and I have sort of accepted my new normal. it’s frustrating but I’ve found less active creative hobbies to enjoy
I will let you know. I’m like you. 3 years ago I did a mountain marathon - 100 miles of bike run and kayak - I’m knackered now walking the dog. I sort of accepted new normal but felt grief stricken the other day when I couldn’t join friends on a long walk. I don’t like the bucket medicine just stick on steroids - I want more investigation before treatment.
I understand. And many friends don’t because you look normal. Only last night an old school friend I ran into said oh let’s take your dog for a long hike and picnic, there’s some great hills and woodland behind our house, we could go for the day.... I had to explain it would have to be a shorter walk. I could manage the picnic 😁I feel I sort of wore myself out. I remember now when I pressed myself to move a bit faster a bit further I used to feel a bit fluey afterwards. Warning signs I didn’t recognise. And then life stress on top.
I’m working on small incremental change.
I’ll look forward to this walk with my old friend. Put in two stops. An earlier one for coffee. Stroll not race.
I know you mentioned your friends were going on a 20 mile walk. That’s A LOT! I think all you could do in that instance is drive to the halfway point with the picnic. Walk back towards them to join in for a bit and catch up on the stories.
It’s heartbreaking I know; I was an action woman before too. I’m doing exercises on my pelvic girdle under the eye of a physio just to build up enough to do ‘proper’ exercise. On the face of it, what you are saying could still be rotten old PMR. However, you do need those other tests too.
Here is a site describing "differential diagnosis" for PMR. If your rheumatologist ran all the tests, as it sounds like he did, and no positive diagnosis, then what's left? PMR, which is a diagnosis of exclusion.
uptodate.com/contents/clini...
And then there is the differential diagnosis for polymyositis:
Hi Daisy. My Mum had polymyositis.
The rheumatologist that diagnosed it after blood tests told us it is quite rare. His actual words were “ one in a million”
She presented in an entirely different way to PMR. Her whole body slowly curled up rather like Myasthenia Gravis until she couldn’t walk or even sit properly. She spent two weeks in hospital on a very high dose of steroids,(Prednisalone) learning to walk again as she uncurled. Her GP had no idea what was wrong with her and was useless. After some weeks we paid for her to see a rheumatologist independently and without a referral because I told him I thought my Mum was slowly dying. He was amazing and saw her that day and took her straight into hospital.
Hope that reassures you and you get sorted.
Every good wish xxx
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