I could have PMR…

[MsWhistledown]

I posted back in September for some invaluable advice from you lovely people.

I suspected I might have PMR but after being in hospital and treated for ‘infection’ which is what the doctors said I had I thought no more about it.

I had high inflammation markers which were thought to be due to infection. At the hospital they gave me antibiotics intravenously and a shot of steroids and sent me home. I got better and had no further PMR symptoms.

4 weeks ago I started to get shoulder pain again. Mostly located on the left side, it came out of nowhere and I just seemed to wake up with it. No other symptoms. It didn’t really go away so I went to see my osteopath for treatment. He usually gets me sorted after 2-3 treatments but not this time.

I was now waking up with it every morning and it spread to the other shoulder and then it started to affect my neck.

I asked my osteopath if he knew a private GP who would administer a steroid injection.

I had an appointment with the private GP yesterday and I went through my history. Told him about my autoimmune thyroid disease and he straight away said I was under medicated and this could be impacting on my symptoms. But the most interesting thing was as soon as I described my neck and shoulder symptoms he straight away said I think you have PMR! He didn’t question my age and felt this is what I was suffering from. He obviously said he would need to test my inflammatory markers over a period of time to confirm his diagnosis. I can’t afford to do that privately.

I had the steroid injection so hoping that will start to work soon. Symptoms have eased up on my right side already.

I just realised that the steroid injection I had at the hospital was 3 months ago. The doctor said the steroid injections last up to 3 months. A light bulb moment. This really could be PMR then?!!!

Last 2 nights I have been having night sweats around my neck like I did last time.

Do you lovely people think I have PMR? Any tips on how to ease the pain while waiting for the steroid injection to do its job?

I will now need to try and convince my own GP and get him to do tests. Not looking forward to that battle.

Many thanks and merry Christmas 🎄

[PMRpro Ambassador]

As soon as you said they gave you abx and STEROIDS it clicked for me!! It is quite common for patients to be diagnosed because steroids for something else improves a lot of other aches and pains that fit a PMR diagnosis.

Nothing will happen before xmas for you of course - but after the holiday, maybe see a different GP at the practice, tell them what you have told us (all of it, private GP included) - write it down with dates and times and be firm you want to be tested for inflammation with a view to it being PMR. Remind them that if it is neglected, there is a risk it may be early signs of GCA and the ultimate effect of THAT being ignored.

[MsWhistledown in reply to PMRpro]

Thank you PMRpro. Exactly the same. I got home from the appointment yesterday and the light came on about the steroid shot at the hospital 3 months ago.

I will do what you have advised and write everything down and see my GP after Christmas.

I won’t take no for an answer. This pain is excruciating.

[PMRpro Ambassador in reply to MsWhistledown]

We used to suggest warmth in bed BEFORE you get up and then a warm shower and stretch - that often gets you able to move and once you can move, things to tend to hurt less. I had 5 years of no pred - I know how you feel! My best days were after an early morning aquafit class in a warm pool - even the pain subsided somewhat. ANd my favourite seat was with my back against a radiator!

[MsWhistledown in reply to PMRpro]

Thank you. I will give that a go 😊

Why did you go 5 years without pref? Did they misdiagnose you? That must have been agony?

[sidra1968]

I figured it out (after 1.5 years and a boatload of money spent trying to), and had my lightbulb moment when I realized that every time I had a Medrol Pack (short term steroid pack) for my other problem, I felt 90% myself quickly..until the dose got to under 16 mg). I googled "what disease does steroids make feel better overnight?" and this site and one more came up.

I then demanded to be checked for the inflammation markers and a month trial of pred. He fought me a little because I was "young" (almost 55) and the markers weren't off the charts high, but I was armed with info from this site and refused to leave the room until he trialed the Pred right then and there..he relented and admitted it was possible, but wouldn't officially diagnose it that day.

I think now things will start moving in the right direction for you!

[MsWhistledown in reply to sidra1968]

Oh wow. So it seems to happen that people find out by accident in a way. Crazy.

I really do hope so. Thank you 🙏

[AtopicGuy]

According to this study (link below), there is a strong association between ATD and PMR. It says:

"In a study of 250 patients with autoimmune thyroid disease, seven (2.8%) were found to have polymyalgia rheumatica or giant cell arteritis. All cases occurred in female patients over the age of 60 years, a prevalence in this group of 9.3%. No cases of either disorder were seen in a control population of 150 female patients over the age of 50 years attending a cardiac clinic at the same hospital. Awareness of this association may allow earlier diagnosis and treatment of this syndrome in elderly patients with thyroid disease."

pubmed.ncbi.nlm.nih.gov/709... includes references to many similar papers.

NB: It refers to PMR as "a syndrome", rather than a disease in itself.

[MsWhistledown in reply to AtopicGuy]

That’s really interesting. Thanks for sharing.

What’s interesting is I’m 43, a fair bit younger than the people in the study. I wonder if any studies have been done with younger sufferers of ATD and PMR? I’m guessing not many? I find when I search online about the condition it is rare for someone of my age to have it…

[PMRpro Ambassador in reply to MsWhistledown]

"when I search online about the condition it is rare for someone of my age to have it"

which tends to be self-perpetuating - if you are under 50, many doctors refuse to diagnose PMR, and also many won't consider PMR despite the symptoms being "textbook". We have heard of doctors saying "if you were older we'd say it was PMR" - which is a ridiculous attitude.

[MsWhistledown in reply to PMRpro]

it really is ridiculous.

[AtopicGuy in reply to MsWhistledown]

Epidemiological studies are great at many things, but identifying outliers is not one of them. Doctors are taught to abide by the parable: "If you hear clip-clopping outside your window, it could be a zebra; but it's usually a horse." Most doctors dismiss the possibility of ever meeting a zebra, even though they exist. Happy Christmas.

[MsWhistledown in reply to AtopicGuy]

I’m fast finding this out AtopicGuy.

[Paulx222 in reply to MsWhistledown]

My Rheumatologist was prepared to diagnose PMR despite me being 49. He mentioned 10% outliers and said he was happy to diagnose that.

Having said that, he also cut my Prednisolone dose from 30mg to 15mg and I'm beginning to struggle a bit.....hope you get some answers soon!

Paul

[MsWhistledown in reply to Paulx222]

Thanks Paulx222