Blood marker-less diagnosis of PMR?

Bones, joints and muscles
1

I was given a preliminary diagnosis of PMR based solely on clinical grounds: all blood markers for inflammation are negative; all the symptoms are there except for shoulder stiffness (I do not have trouble combing myself), however, stiffness elsewhere is ever worse (hips, neck, thighs, buttocks, biceps, even pectorals and abdominals during flareups) and makes me walk like a robot during flares. My eye muscles are particularly affected, I can only read for a few minutes and in a totally upright position, if I read in bed, for example, I hurt at the eyes and get dizzy, it is because of the stiff neck; a head-forward position strains already-affected neck muscles and the referred pain shoots up to the eyes. All along I had though I had fibromyalgia, but this is different. Male, 56.

2

Were you put on prednisone when diagnosed? If so, was there a very marked improvement within hours of starting? This is generally the definitive diagnosis for PMR. Are you sure the pain in your eyes is coming from your stiff neck? If you are on pred it may affect your eyesight but if you get a headache on one or both sides at your temples with tender scalp and it's affecting your eyesight you need to get it checked as a matter of urgency in case you have GCA. I hope you can get to the bottom of this as you sound like you are in a lot of discomfort.

3

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?

4

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.

5

Diagnosis of PMR is a diagnosis of exclusion - and using clinical symptoms with supporting evidence if it is avaiable. About a fifth of patients don't show the inflammatory markers

However, your trial of pred wasn't much of a trial - you really do need 15mg for the majority of people and men, generally being larger, may need a bit more. 10mg is unlikely to do much at all.

The latest international guidelines say "the lowest effective dose in the range 12.5-25mg". If the pain responds even partially to the pred it isn't fibromyalgia - that is a definite.

6

Thanks, Celia. How can pred impact the eyes?

7

Thanks, 6EileenH, 1/5 patients with no markers is a lot of patients!!!! do you have a reference or link to it? The rheumatologist was adamant to diagnose PMR without markers, so I am back with my GP, who is more open.

Both you and Celia14153 and you concur on the low dose, experientially. I will check back with my GP for a second trial. The med test as a discrimination tool vs fibromyalgia is quite interesting.

8

Googling polymyalgia rheumatica with normal ESR brought links to the first two of these papers and the third was quoted in one of them:

The ESR in the diagnosis and management of the polymyalgia rheumatica/giant cell arteritis syndrome M. E. ELLIS AND S. RALSTON

Polymyalgia rheumatica in patients with a normal erythrocyte sedimentation rate.Helfgott SM, Kieval RI

Polymyalgia rheumatica without significantly increased erythrocyte sedimentation rate. A more benign syndrome.  González-Gay MA, Rodríguez-Valverde V, Blanco R, Fernández-Sueiro JL, Armona J, Figueroa M, Martínez-Taboada VM

The papers might as well not exist according to a lot of doctors - but exist they do.

9

Thanks a ton, EileenH! Both my ESR and CRP are normal. Thanks again

10

Wow!

"More often in men" check

"Starts earlier" check (I was 46 when symptoms started)

Any comment on normal CRP? Is it used to diagnose PMR?

Thanks.

11

CRP is a protein in the blood - one of the proteins that contribute to the ESR being raised - and is produced in the liver in response to inflammation being present in the body. Any inflammation pretty much so it is very non-specific. And some people simply don't "mount the acute phase response" as the medical people say. There are other "acute phase reactants", ferritin is one. My ferritin is raised - ESR and CRP bumble along at the bottom of the normal range. 

Raised ESR and CRP are used to support a diagnosis of PMR - but they are only part of the picture. They should be treating the patient not the lab results - but there is a generation of doctors that is fixated on numbers...

12

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!

Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

http://patient.uservoice.com/knowledgebase/articles/398316-adding-links-to-posts

http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

13

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!

14

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.

15

Thanks again, EileenH! I already shared the info with my PC physician who considered interesting, so I guess these forums help advance knowledge.

16

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!

17

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.

18

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

19

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.

20

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