Blood tests 'normal' but PMR symptoms

[Bossyboots3]

Hi all, I was diagnosed with PMR in Jan 2022. I started with 25mg of pred, which worked within a day and tapered down gradually. It took a while to get down from 10mg and i had a few ups and downs with dosage. I was on 2mg for a while and the GP i saw for meds review (a new GP) was pushing me to come off, and talked about needing to let my adrenals kick in again, and this only being possible by coming off the steroids. I followed her advice, and dropped to 1mg and then none around 2 months ago. However, the symptoms never went away and worsened - pain/discomfort in neck and shoulders and upper back and tightness in thighs/hips. Stiffness during the night and on waking up. I went back to the GP before xmas, (different one this time) who did not want to put me back on steroids without a blood test, and told me my blood had been normal before my diagnosis and he was doubting whether i have ever had PMR, especially because it is rare at my age (I am 53yrs). My bloods have come back normal with a note on saying 'normal - suggesting no active PMR. I have a GP appointment tomorrow and will be asking to be put back on steroids, despite the normal bloods, as the discomfort is interfering with my usual activities and sleep etc. Anyone with similar experience?

[DorsetLady PMRGCAuk volunteer]

Various studies over the years have shown that up to 20% of patients do not have raised blood markers. So push for steroids - you may not need as high a dose as previously.

And “rare” does not mean impossible -you are in good company here with having PMR in your 50s.

[piglette]

Have you ever had raised blood markers? Up to 20 per cent of people do not have raised markers. Tell your GP that perhaps your PMR does not realise you are only 53 and are therefore not allowed to have PMR!! I get so frustrated when I hear how little some doctors seem to know about PMR and steroids.

[Gimme in reply to piglette]

I saw dicters and read that as dictators. My grumpy rheumatologist would certainly fall into the category.

[piglette in reply to Gimme]

I love it, sums it all up! My fat fingers.

[Gimme in reply to piglette]

ha ha gave me a wee chuckle to myself, anyway.

[JeremyNZ]

Kind of. I had a few tests showing some inflammation, but then zip. I heard that 22% of PMR sufferers do not have inflammatory markers. The kind of pain is important for PMR. Not so much joints as muscle and their connections. Shoulders, girdle and thighs are most common. But I also have calf pain, and butt pain. PMR IS a vascular disease. If Prednisone fixes your pain but anti inflammatories doesn’t then PMR is a good call.

[SusyTe]

I was diagnosed with PMR at 53 by the eminent Professor Rod Hughes. My bloods have always been normal but he says he does not go by blood tests alone as some PMR sufferers do not have raised inflammatory markers.

[Gimme]

My inflammatory markers have never been raised, but my symptoms sure as hell fit the PMR pattern. Plus, possible similar conditions have all been excluded by other tests. However, because of my blood results, each new doc that I see queries the diagnosis. The number of docs who have very low knowledge of PMR astounds me, but the ignorance is self perpetuating. If they refuse to consider PMR, then they won't get the clinical experience of patients who have it.

[S4ndy]

I was 46 when PMR was first suggested as a diagnosis. At 54 I finally agreed to try prednisolone. Had 75% improvement within 48 hours. My Rheumatologist doesn't go on blood tests but on how you are feeling. I am now on a maintenance dose of 5mg which has been so for 4 years or so. My new GP accepts this. Interestingly I have opposite blood results my levels have never come down to "normal" but my Rheumatologist and GP think that is related to other things I have going on as if I get a PMR flare then my CRP and ESR do go up. PMR is a very individual condition which seems to have an exclusive set of symptoms for each person. So my view is there is no "normal model" for PMR just a unique set of symptoms for each person. Doctors generally don't seem to like this as it doesn't give them a baseline just what's written in the textbooks. I think that is one of the problems with why doctors get frightened of prednisolone and are reluctant to use it long term as they can't see it working only see the side effects. They don't balance how much difference a really small dose of steroids can make to patients symptoms against the risks of prednisolone. I think that I would be bed bound and suffering constant flares without my 5mg daily dose. It's all a question of balancing risk. Our poor overworked NHS doctors don't always have time to take an holistic view.

[PMRpro Ambassador]

I never had raised markers - in that they weren't out of "normal range" but they were raised for me. My normal is low single figures for ESR, it ran at 16-18 for weeks during a massive flare when I could barely move. My CRP was high once - on a day when I probably had a severe atrial fibrillation episode but not identified.

I'm under a world leader in the PMR world. I've had PMR symptoms a long long time, I was still 51 when they started but not diagnosed until nearly 57. All factors many doctors would say means it can't be PMR - but he is happy enough it is.

PMR is not a homogeneous disorder that obeys the man-made rules they have dreamed up for themselves. It has several very different presentations and no one-size-fits all approach whether in diagnosis or management applies.

[Harrisonboy]

I'm there

[AtopicGuy]

Prednisolone works for me: I've been on and off it 3 times in 4 years. Symptoms always come back as I taper off it in preparation for more tests. Inflammatory markers have always been normal, even when I came of all medication and my eczema & allergies flared up (see photo). I just discovered I have autoimmune antibodies that healthy people shouldn't have (anti_AChR) . At higher levels, they are associated with myasthenia gravis and other autoimmune diseases, including RA and lupus (according to Medscape link below), that also respond to prednisolone. Those diagnosed with MG sometimes don't have these antibodies but, if they do, they are at least double the level I have them. That begs the question: is atypical PMR caused by sub-clinical presentations of other autoimmune diseases? A strong, rapid response to prednisolone is a very good clue.

emedicine.medscape.com/arti...

[Gimme in reply to AtopicGuy]

Funnily enough, the grumpy rheumatologist declared with great confidence that I didn't have PMR when he saw me and that the pred was masking something else going on. Anyway, I haven't found out what it is that he thinks it is, as he was so horrible that I haven't been able to face seeing him again. He didn't tell me why he doesn't think it is PMR either, unfortunately. Then my doc went off on the fibromyalgia tack and I said whoa, at that point. Anyway, I've tapered some way with the pred now, so maybe I should ask to see someone else. Though, in theory, they ruled everything else out that it could have been.

[AtopicGuy in reply to Gimme]

I was surprised to find that many autoimmune diseases that cause muscle weakness, fatigue, pain and vision problems are classified under neurology, not rheumatology. This is because, in these diseases, the immune system turns against the nerves (or their connections) that control the muscles, not the muscles themselves. This makes sense when diseases produce tell-tale motor-control problems. But what if the disease hasn't reached that level of severity? The rheumatologist won't be interested, because they can't find any primary inflammation; and the neurologist won't be interested, because your muscles are trying their best to do as they're told.

[Bossyboots3]

Thanks for your replies. I had a GP phone appt yesterday, and she would not prescribe pred, due yo my bloods being normal and went on about long term effects of steroids. She has referred me for physio saying strength and conditioning exercises may help (the irony being that the current aches and pains have discouraged me from doing my usual running and boot camp class over the last few weeks). I said I did not have much faith in that working. She said after that I could possibly have an imaging scan to check my joints, though I said my pains are muscular not in the joints. She said she would consult with another GP and ring me back with any different advice ( to fob me off I assume as she didn't call back). All in all pretty frustrating. I think I will now make an appointment with the original GP who diagnosed me 2 yrs ago, as he appeared to go on symptoms, rather than bloods.

[DorsetLady PMRGCAuk volunteer in reply to Bossyboots3]

Thanks for update.. and better luck with original GP… sounds as if he is more knowledgeable. If so, and he agrees to Pred. hope he passes this on to GP your spoke to yesterday.

Sure you’ll keep us informed either way.

Maybe keep appointment with physio, sometimes they have been the one to suggest PMR in the first place.

[PMRpro Ambassador in reply to Bossyboots3]

And if he does agree - make sure the other one is educated. Physio almost always makes things worse as it does all the things that PMR doesn't like, such a repetitive movements. But yes - go to an appointment, they may be more knowledgeable.

And send her this for bedtime reading:

ncbi.nlm.nih.gov/pmc/articl....

If that group says you can have PMR with normal levels, worth listening to!

[Pollyone in reply to PMRpro]

Interesting reading. I ‘luckily’ was diagnosed by a physio I was seeing as I couldn’t turn my neck. I mentioned my symmetrical aches and the fact I couldn’t get out of the bath and she kindly wrote to my GP. I had tests and my inflammation was slightly raised so I was put on steroids but 30 mg which have affected my blood pressure. ( ended up at an and e). I am now down to 15mg and reducing but feel an uphill battle requesting smaller than the 5mg tablets prescribed. I now have additional 1mg tablets and I can reduce appropriately for my symptoms rather than 5mg at a time especially at lower levels.

Very much a learning curve for a ‘first timer’ but I’m back at the gym and the steroids worked within 6 hours. Blood tests this week so I’m pleased I am being monitored even if is just by phone call appointments. I feel grateful to have started treatment so early. Each time I step down with the steroids I have some aches but they stabilise after a few days. Being 70 brings things I had never even heard of!!

[PMRpro Ambassador in reply to Pollyone]

Careful in the gym!!! Don't go for the burn whatever you do!