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

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

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.

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

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

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

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

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

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.

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?

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.

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

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.

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.

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.

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.