Can it still be PMR even if blood tests come back as normal?

Bones, joints and muscles
1

Have been suffering severe muscle pain for a number of months but just put it down to getting older am almost 51 and spending too many nights sleeping on daughters sofa following the arrival of my

grand daughter 14 wks early. Felt really tired sleep pattern appalling as shoulders and hips very

painful thought I would feel better once I broke up for summer hols but within days all symptoms

were a thousand times worse. Saw GP who was very understanding and immediately thought it was

Likely to be PMR. Sent for blood tests but all came back negative and pain getting worse. Sent for

more bloods as GP still sure it's PMR results also negative. GP has discussed with college who is

reluctant to start me on any meds so now referring me to a specialist having read up on PMR I think the GP maybe right but why would blood be normal don't want to take steroids unless needed but so want my life back and to be without this pain. Any advice would be so much appreciated. Thank you

2

Bobski, not sure what book your Doctor is reading from, but there are any numbers of us PMR sufferers who do not have raised blood markers. I am one and I was diagnosed more than 10 years ago by a very good Rheumatologist, so it is hardly a new problem! It might not be usual, but it is far from rare.

If you go to the sticky threads at the top of the page here you will find directions to several very good PMR/GCA dedicated websites, (plus a dedicated forum) and from there you can print all kinds of information for your doctor - and you - to read.

Any questions, just ask!

Nefret aka Catie

3

Thank you so much for that I am back at doctors tomorrow and am almost hoping she will try the steroids just to see if they work and to give me some relief. I will check out the sites you recommended and update after tomorrows visit.

4

Bobski

Very wise of you to ask for a trial dose of steroids - many GPs do just this when a patient presents with what they think might be PMR but in the absence of raised blood test markers. If there is a good response to the steroids, sometimes within just a day or two, then they take that as confirmation. Best of luck and do come back and let us know how you get on.

MrsO

5

welcome blood markers are a good indication of inflamatory markers but can be within nornmal limits therefore as said before trying steroids and an improvement is the only indication of possible pmr plus the usual symptoms eg stiffness and pain in shoulders back legs etc teamed with extreme fatigue there is no test that says yes or no to pmr its a process of elimination good luck carolk

6

Hi guys well have been back to GP who is reluctant to start steroids due to blood results and says I don't

meet PMR criteria because I am too young oh if only I felt it. She has made an urgent referral to a

rheumatologist and put me on cocodamal naproxen and amytriptaline in the hope that it will give some relief

so here is hoping. Part of me is very relieved to not start the steroids but the other part of me was hoping to

in the hope that i could be pain free Thank you all for your responses Bobs x

7

Hi again Bobs

Well unfortunately you are not "too young". You should download a copy of The British Society of Rheumatologists Guidelines for the Management of PMR and take a copy to your GP to educate her! The Guidelines state that the core inclusion criteria are "Age >50 years". Some people have been diagnosed in their 40's. At least she has agreed to refer you to a rheumatologist and hopefully he/she will be more clued up. Do hope the appointment comes through sooner rather than later and that, meanwhile, the concoction of drugs she has suggested help to relieve your pain. Do keep in touch.

MrsO

8

Bobs, as MrsO says you are not 'too young'. Although I was 57 when diagnosed, it's now believed the onset began in my early 50's.

Generally PMR doesn't respond to anti-inflammatories, I was tried on any number before diagnosis and they did nothing for me. As said though, that cocktail of drugs may help a little and I hope it keeps you going until the Rheumatologist appointment.

It still might be worth taking her a copy of the guidelines - she definitely is not up to date with PMR!

Catie

9

In full sympathy. I don't have a diagnosis yet but fit most of the symptom ranges. I am 48 female. went to bed six months ago and literally woke up so stiff I couldn't get up - pain in shoulder and neck. within a few days had gone to my hips too so every morning was a trauma. everytime I sat down I got so stiff I couldn't get moving. GP suspected PMR but all bloods three times over came back as normal. Referred to rheumatologist - had every test, ultrasound, xrays, mri scan - all normal! Meanwhile I am getting worse and worse. 6 months on , went to back of my knees - really odd, so couldn't bend without pain. All the while taking naproxen. eventually stopped taking them. but they did take the 'edge' off pain but didn't do anything to stop stiffness. saw rheumatologist a few days ago and broke down as he was at a loss as to my condition due to no abnormalities on any tests - except anaemia and vit d deficiency - am also hypothyroid but have been stable for years. He gave me a steroid injection three days ago. Within 24 hours my stiffness had subsided significantly. Got up this morning and had a shower without help as no stiffness! but still have some pain in shoulders and hips but nothing like it was. Any views ? wouldn't say my response to steroids was miraculous or dramatic but it has eased so much that today I was able to function like a near normal human. Grateful for any information as I was getting to the end of my tether and really despondent - continous pain is so debilitating and depressing.

10

Hello Dunster

So sorry to hear how long you have been struggling and suffering with such pain in spite of rheumatology referral. Like you, I also had every test under the sun following my first referral to a rheumatologist by which time I was in a wheelchair. I remained undiagnosed until even worse symptoms arrived and was eventually diagnosed with both PMR and GCA.......by a different rheumatologist!

Going to bed alright and waking up the following morning with the stiffness you describe is how many of us would describe our onset of our PMR, and your response to the recent steroid injection would be taken as confirmation by most GPs/rheumies.

Like you, I was also diagnosed with anaemia when being investigated - this righted itself in due course without medication.

What does raise questions is your mention of Vit D deficiency as a lack of Vit D can lead to all sorts of health problems including muscle/joint pain - do you know what your reading is? Have you been prescribed a supplement?

I do hope you continue to feel better and that your rheumatoligst has given you a follow-up appointment following to monitor your response to the steroid injection?

11

thank you so much for replying. My vitamin D level was 16. don't know what it should be?? Been given vitamin D tablets three times a day 250mg for three months. I suppose my concern would be the cause of deficiency. go back to rheumatologist in 3 weeks for review. have to contact nurses on monday to let them know whether the steroid has had any effect so far. Clearly has - got up this morning with no stiffness. still got aching in hips and shoulders but is bearable. Cleaned house, took dog for a walk and feel really energised. I can't believe how absolutely terrible I felt compared to this. Prior to six months ago I was fit , active and full of energy. I just hope it lasts. Rheumatologist did say he may need to give me several injections if this has effect. So although I don't relish steroids, I can't bear to be back in the same place.

12

with suchan encouraging response to steroids i hope they try the standard start to pmrtreatment which is20 or 15 mg prednisolone daily plus adcal 1 twice a day , i did not get a miraculous response but try without steroids boy do i feel much worse , so i started at 15 mg and 17 months later i have reduced to 9 mg so its a slow process .plus your body needs movement and rest and you will need to find the balance in your lifestyle ,i still get good and bad days but compared with how it was at the start there is improvement , one thing that never goes is the fatigue both physical and emotional but you learn to live with it after all pmr is life changing not life threatening . good luck let us know how you get on i have my bloods done monthly crp and plasma viscosity plus yearly check on fbc liver kidneys and diabetes .i do not see the reumatologist since diagnosis the gp and i manage the condition carolk

13

thanks for response - the issue with the medical teams seems to be with my age and the fact that I'm not anorexic or losing lots of weight so can't be PMR ! but in all seriousness I'm no expert but this forum alone is showing several people who don't tick all the boxes but are PMR. The lifestyle balance will be a challenge but I'm hearing it is a necessary thing - which I'm learning to come around to. will let you know I get on.

14

Dunster

16 is an very low Vit D reading. As for what is a normal reading, different Primary Care Trusts have varying ranges for what is normal. Some consider that 50 is ok but I believe 70 is the optimum. My reading was 54 last year and during the Spring of this year had gone down to 44. I was prescribed pure Vit.D meds (Cholecalciferol) but was then advised against taking them due to my reduced kidney function, so I have been advised to get out in the sun whenever possible and have the test repeated towards Autumn.

Although your symptoms are so indicative of PMR, I'm wondering whether they would have resolved anyway once your Vit D levels were normalised by the supplement. If the steroid injection continues to relieve your pain - and I so hope it does - then it might be reassuring to know that the injections can help to avoid the side effects possible with oral steroids as they go directly into the bloodstream, therefore placing less stress on the organs.

15

Dunster - clicked on the wrong place before adding little word of warning - take special care with "cleaning the house" and "feeling really energised". You need to give the treatment time to really get control of the inflammation in your body - the increased energy is purely a side effect of the injection and if you overdo things just because you feel good on any given day, the illness will come back to bite. The steroids are not curing PMR (if that is what it is) they are simply controlling the inflammation that causes the underlying symptoms. Do take things easy as, if you do in fact have PMR, you will find, like the rest of us, that we have to learn to pace ourselves - not easy but most important.

16

Dunster, just to add that I actually put on a few pounds before diagnosis, but I think that was due to the fact that I was pretty well immobile and not tearing about at the double, which was my usual state. It's true that some do lose weight beforehand, but I can't think why the medics should associate anorexia with PMR!

I heartily second MrsO regarding the overdoing the housework (and anything else) - it's something I have yet to learn.

17

thanks all - yes I will take your advice and slow down a bit. I do so hope you are right about the vit D! if that is the main problem then it would be easier. but i still don't get how it got so low given what you describe as normal levels - would have to have a vampire approach to sunlight to get so low I think!

18

Dunster

Look at the beginning of the Poly thread, there are two items PINNED. Go to the website and read the BSR Guidelines on the Diagnosis and Treatment of PMR. Also click on the Newsletters and read up on Vit D deficiency. You will see from the guidelines that Vit D deficiency is part of the diagnosis procedure.

19

And - late to the party again I'm afraid - but (to cover answers to both of you):

I was 52 when PMR first started but relatively mildly and had it for 5 years with no treatment before it went mad

I have NEVER had a raised ESR or CRP level

I have never been anaemic (I now live at an altitude of 850m which may have an effect and spent a lot of time here in the winter then - but I doubt it)

One in six patients with PMR have blood levels within the normal ranges quoted by the labs.

Normal blood values and unusual symptoms are more common in younger patients.

I have never lost weight with PMR, in fact in the first 5 years I put on weight steadily because of being unable to exercise properly

That is an extremely low vit D level and even if it isn't the cause of the muscle pain it won't be helping

That dose of vit D will take until kingdom come to raise your vit D level (have you done the recommended reading about vit D?). You need high dose injections.

Your vit D level is affected by several things: there is almost none in our diet in Europe, getting older impairs the process of making it in the skin, most people north of Turin in Italy don't get enough sun anyway, using sunscreens (even factor 8 ) reduces the production to about 5% of the maximum you can manage.

What you describe is a fairly dramatic response to pred! They look for a 70% response in symptoms within a couple of weeks to a trial dose of 15mg/day by mouth.

Steroid injections have not been shown to be an adequate way of treating PMR. The effect wears off after a few weeks at most and often PMR is diagnosed after an injection in a shoulder or hip because of suspected bursitis - which is also a part of PMR - and finding that other symptoms improve too. But even several injections won't achieve a lot according to the medical literature.

So on balance - I can't say I am particularly impressed by the knowledge on the part of GP or rheumy as described here. Download the Guidelines on diagnosis and treatment you will find on the recommended sites and hand them over to the doctors for their perusal and edification.

Oh yes - someone mentioned an "urgent referral". That merely means you might be seen sooner than the current 18 week limit on waiting times (unless, of course, that is another target removed by the current gubmint). It does NOT necessarily mean you will be seen soon.

And although this isn't meant to be scary: if you have PMR you are at a higher risk of developing GCA, another closely related vasculitis, and that can affect your eyes and cause blindness. About 1 in 6 patients with PMR develop GCA at some time, the rate is higher for patients not treated with steroids. If you get any funny visual symptoms, pain in your jaw when chewing or a really bad new headache - go to A&E and tell them everything. Once your sight is gone it is too late to treat it.

Hope I didn't forget anything

Eileen

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Mr Moderator Sir!

I swear - this forum still has gremlins. I wrote "factor eight sunscreen" - I did NOT ask for a stupid face.

It adds faces for repeated question marks - I'd rather not if you don't mind.

And the post topics were not in order of latest post when I logged in today - what's with that????????

Thank you.

rolleyes - I think I asked for this face :-)