Blood marker-less diagnosis of PMR?

Thank you very much, Mrs Hobbles. I tried pred 5 days: 10, 10, 15, 15 and 15 mg without much change, but when I stopped it I got worse than before the trial. In addition to the reading-triggered flare, there is yet another type of eye discomfort which is totally puzzling, when the back of the neck is too stiff, the stiffness creeps up above the head and down into the eye muscles, so much so that if I bend my head forward my eyes hurt, I can actually palpate the bulging muscles beneath the eyebrow, this comes alongside the almost body-wide stifness. The big puzzle is the unremarkable inflammation markers. Thanks for the advise on GCA, but I do not get the headaches (I assume they are vascular and not muscular headaches), but almost all my muscles have tender points. I do notice a vein bulging at the end of my left eyebrow, should I be concerned?

15 didn't do it for me so I went up to 20, then 25. It took a week to work 80% so I think 15 is a starting dose, some people get an instant response, some take longer. I'm now back to 20 which keeps things under control. I would definitely check with your GP with the symptoms you describe. Pred can impact on eyes and so can GCA. Hope you get to the bottom of what is causing your symptoms, and some relief.

Thanks, Celia. How can pred impact the eyes?

Hi, as far as I understand it pred long term use can contribute to cataracts, blurry vision and red eyes. However, this doesn't happen to everyone. Just useful to see your optician regularily and generally take care of yourself. 

Incidentally a friend with fibromyalgia sent me this link. You may find it interesting  Hope all goes well!

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Hi - I did reply but it's being moderated! Perhaps because I included a link to the latest research on fibromyalgia in my reply. I don't really know but didn't want you to think I had ignored your question!

Thanks, Celia14153, it's OK. I have lived and coped with a fibromyalgia diagnosis for 20 years, the pervasive stiffness does not quite fit in it.

While waiting for moderation, just to say that vision is covered in the pred side effects leaflet. Blurry eyes but also the potential development of cataracts and glaucoma. Important to keep up with visits to the optician. After checking with my GP and optician I also take lutein, gilco and bilberry tablets. Lutein is known to be good for eyes. Tally ho!

You are not allowed to put links in open posts - you can send them privately if someone wants them or internal links within this site. Or you can ask permission first and it will be given if it is a respectable site in the opinion of the moderator. This is a site used by healthcare professionals and services so is tightly moderated.

Thanks. Makes sense. It's not a big deal but a reputable article with the latest findings on fibromyalgia which may be of interest. 

Thanks, Celia14153, recent knowledge on fibro is valuable, however It is a good policy to restrict content to the specific condition of the particular discussion.

My quest is that of differential diagnosis: PMR/GCA, fibro, or a neuromuscular condition. I trust thay I can share it and help contribute a little.

PMR/GCA respond to pred. Fibromyalgia does not. Neuromuscular is another question.

..which raises a new question: if prednisone is used to diagnose or discard PMR, an analogy could be applied to using, for example, diazepam. Does diazepam relieve stiffness in people with confirmed PMR? If the answer is no, then using it on people without a diagnosis and obtaining a benefit (stopping stiffness) would simultaneously discard PMR and confirm that the condition is one that benefits from CNS relaxants (some of the neuromuscular conditions and/or fibromyalgia). If the answer is yes, then this approach is useless. So, does diazepam help people with PMR?

To the best of my knowledge diazepam has no effect on pmr.

I'm uncertain of the ethics of prescribing something to confirm a diagnosis in the expectation there will be no improvement when there is something else which if providing improvement confirms the diagnosis.

Put another way ... trial and error is a very poor diagnostic tool.

Separately. I haven't a clue what my ESR/CRP are. No initial test as part of diagnosis. Fortunately, classic symptoms which took experienced GP about 5 minutes to diagnose, and pred to confirm were sufficient. No tests since as the pred keeps symptoms reasonably under control. I consider myself lucky.

PS I can't recall the details but the initial dose of pred was interesting. Took longer for GP to work it out than to diagnose. Two days of high (I suspect 25mg as I still have lots left), a couple of days of 20mg, then 15mg and return to GP. Made difficult by weekend and public holiday. It seemed very precise.

The immediate result was the well recorded change from crawling up stairs to running up two at a time. That was three years ago, I'm down to 3mg/day now, most of the time.

Thanks, Julian. Quite a straightforward approach. Good for you. How old were you when the first symptoms presented?

64 and a bit when diagnosed, a bit over 3 years ago ........ first symptoms appeared very rapidly over a few days. I had 3 months undiagnosed while traveling through Asia. Picked my doctor carefully on return to Australia.

Once I got past "this is chronic, it ain't going to go away fast" I consider myself lucky. Easy diagnosis, doctors that understand its "my" disease not "theirs", lots of patience (pun intended).

Currently 3mg/day most of the time. Nearly ready for 2.5. A couple of months driving in desert was good. A couple of hours chainsawing followed a week later by some heavy maintenance on truck has slowed me down a bit. But generally stable.

All a bit of a roller coaster. Relatively stable now.

Not that I know of - but it is used as a muscle relaxant and for some people MIGHT help if they ALSO have myofascial pain syndrome.

However - pred SHOULDN'T be claimed to "confirm" PMR - although there are some doctors and very many patients who think this is the case. It is typical of PMR that for many people it responds quite dramatically to a moderate dose of pred - 15-20mg. Where a much higher dose is used or required it clouds the view - other things would also respond to much higher doses, including inflammatory arthritides. But it DOESN'T 100% confirm it is PMR. Where symptoms do respond to pred - it certainly isn't fibromyalgia, just as if the patient has raised blood markers it isn't fibro, it isn't an inflammatory condition.

Like Julian - I had textbook PMR symptoms except for the blood markers, resolutely low, and 15mg of pred brought about a miracle in under 6 hours. Pred IS used in many conditions as a short term means of managing pain that is probably inflammatory in origin - RA and other inflammmatory arthritides included. So I was given it for 6 weeks on another basis - the one single week of 15mg pred to see if it improves the symptoms that is suggested by some expert doctors is not going to do any harm to anyone. If it works, it increases the suspicion of PMR. If it doesn't it still doesn't rule out PMR - it may simply be this patient needs more.

I wouldn't be concerned about the vein bulging at the end of your eyebrow, if you have no associated pain, scalp tenderness, pain around and in eye, etc then it's just one of those veins that bulge! As regards pred affecting eyesight, I was diagnosed with GCA last August and put on 60mg pred. After a clp of months noticed my eyesight had disimproved quite considerably so got my eyes tested. Optician said it could be as a result of GCA but also could also be as a result of pred and MAY improve as reduced the dose. Didn't give it much more thought and continued my reduction. Am now at 7mg and recently noticed my eyesight had disimproved again, so off to optician. Turns out my eyesight has actually improved, so original opticians theory was correct! Needless to say I'm delighted! So from that point of view that's basically the effect on eyesight! The stiffness creeping over your head is strange and just to relay another incident. Years ago i went to an acupuncturist as I'd been having really bad headaches, he described what was happening to me by using his hand. He held his hand in front of me palm facing and wove an imaginary line through his fingers describing that blood vessels and nerves interweaving between the spinal cord and with prolonged stress and tension (in my case) the muscles cause the gap to close, (as he closed his fingers together) and this causes the nerves to be pulled closer and strained from the front of the forehead thereby causing headaches. Not sure if this is causing your headache and stiffness. It might be an over simplified explaination but might thrown some light on your situation.

Thanks, EileenH, myoascial pain is the main component of my fibro diagnosis, but the stiffness as worsened over the past ten years. Yes, I use diazepam during flares, especially during spams (powerful and extremely painful contractions of an entire muscle, not only a band). Fibromyalgia and myofascial pain are central-sensitization (CS) disorders, practically any sensory signal gone rogue can trigger CS, including chronic pain and stiffness from an inflammatory condition such as PMR and RA (that is why it is not uncommon to find people with both FM and PMR). My goal is to ascertain wheter or not I have PMR.

Umm - myofascial pain is not usually seen as part of fibro nor as a pain perception disorder. It is due to an inflammatory component and fibro is NOT inflammatory. The trigger points in MPS have been shown to be concentrations of the same cytokines that cause PMR - sorry can't give you a reference as it was a personal communication at a meeting which didn't have a Proceedings published.

If you want to ascertain if you have PMR the obvious place to start is finding your response to a sensible dose of pred. The myofascial pain syndrome will often respond to a higher dose of pred and return as you reduce the dose. Steroid injections in the region of the MPS trigger points also often help as does manual mobilisation - as that is done patients often feel worse rather than better at first as the release of the concentrated cytokines into the system causes a flare of the PMR symptoms. Of course oral pred will also help that.

Thanks. That myofascial pain has a inflammatory component is new to me. Let me recap:

- First trigger points 23 years ago.

- Fibromyalgia diagnosis 20 years ago. I never bought it.

- All along trigger points are ever worse, during a flare all of an entire hemisphere's (usually left) muscles develop trigger points. Full-muscle spams are rare but do occur.

- First PMR-like stiffness flare 10 years ago (at age 46). I could not get out of bed, totally stiff neck, back of hips and thighs. No problems lifting my arms. I took clonacepam and helped. But stiffness flares were rare up to recently.

- Around the same time I ceased to be able to read in bed due to tight eye muscles, reading straight up is the only way and for a limited time.

- Only recently (past two years and in particular since Feb 2017) I am stiff all day. Thighs feel as if I had done 500 squats.

- Exercise used to be beneficial up to a few months ago, now it worsens the symptoms.

- A neurologist discarded a neuromuscular condition and suggested I have PMR. Prescribed 30 mg p.d. to test.

- Went to the rheumatologist and he said that without elevated inflammation g markers he was reluctant to give a PMR diagnosis. Sent me back to the neurologist.

- Instead I touched base with my primary care doctor who suggested I test with 10 mg. I did five days: 10, 10, 15, 15 and 15 mg with no clear improvement.

- Without a PMR diagnosis he suggests I try to find a physician more specialized in rare muscle disorders.

Finally, from what I have learned in this blog (which I am deeply thankful for to you people) I do not have textbook PMR, and if I do, the right approach is a higher dose of pred for a longer time, I will therefore go back to my PC physician and propose this new strategy.

Assuming you are still not sure it's PMR you could google polymyalgia differential diagnosis and you will find a number of other conditions which may fit your particular suite of symptoms.  As for "atypical PMR" I don't know what that is - as far as I can tell I'm the only person posting regularly who has "typical PMR".  we all seem to be different, respond to pred differently, have the disease for longer or shorter periods of time, have different related issues....  And at that I think I've proceeded "typically" because I had the benefit of stumbling over this forum and the dead slow tapering plan at exactly the time it would prove most beneficial to me.  Otherwise I'd likely have ended up "atypically" yoyoing up and down the pred doses like so many do.

Good advice to prevent going down the pred dose yoyoing path. Thanks. Found it, the ACR has a nice PMR differential diagnosis chart.

Sounds pretty typical to me! As I said before - that "testing dose" was nowhere near high enough and up to 20% of patients don't have raised markers. Quite how one gets through to the deniers I dont know though! Nor the fact that some 50% of patients are told at some point they are "atypical" - despite most of us being able to say "tick" to almost all their symptoms...

I had what was probably ME in my late 20s but recovered over a few years, in my 30s my gynae thought I was in early perimenopause and gave me HRT which made a big difference the vaguely blah symptoms I had together with big-time fatigue and sweats. It wasn't long after finally stopping the HRT (after one too many scare story) that the PMR started. But the myofascial pain syndrome stuff was there in the background the entire time, made worse ona couple of occasions by whiplash injuries. 

I believe they were ALL manifestations of some sort of autoimmune disorder.And I so wish I had never given up the HRT!