Are there other folk who have been in this situation.? My symptoms came on suddenly after doing a HIIT session. ( I should say I had not done HIIT before, though I have done Fit boxing) I have always been fit and had good upper body strength but 2 hrs after the session I couldnt lift my arms. That was 6 months ago. Terrible pain in upper arms and shoulders, can't sleep turn over , night sweats, have had to go off sick, but normal blood results on 2 occasions. Saw Rheumatologist in Jan and now waiting to see a shoulder specialist to rule out an injury but feel this is just a waste of time as I am sure I have PMR.
Getting a diagnosis with normal bloods: Are there... - PMRGCAuk
Getting a diagnosis with normal bloods
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justcallmenurse
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CelticPMRGCAuk volunteer
From your description of your symptoms, I would agree with your suspicion about the culprit being PMR.
It isn’t that unusual to have normal blood test results with PMR - about one in five PMR patients have normal markers.
Ask for a trial of the steroid, Prednisolone at a daily dose of 15-20mg. If your pain improves by around 75% within a few days to a week, you will have your answer.
Good luck and do come back and let us know how you get on.
Thank you for the enforcement. I have decided to take the bull by the horns and have written back to the Rheumatologist, today in fact and copied in the shoulder specialist and my Gp as his plan, after I had seen the SS was possibly then an MRI but I have been worrying about the time going through all these hoops as an OPA for anything is weeks not to mention being off work. I will let you know the verdict.
Just call me another nurse 
There’s a few here, maybe we are prone?
Yes normal ESR (11) and CRP (1) for me.
I too thought I had a shoulder injury, pain occurring first in my left shoulder. I went to the gym for body balance thinking strengthening my muscles was a good way to beat an injury. Each session saw me come away with a different set of problems, upper arms, thighs, and then what felt like my diaphragm. My left shoulder was joined by my right hip, left hip, then right shoulder, with typical proximal myalgia and ‘morning’ stiffness that lasted til 6pm. I felt unwell, tired and lost weight.
GP said it wasn’t PMR due to normal ESR and CRP, but like you I was convinced, and informed him that 20% of us do not have raised markers. I managed to persuade him to let me try prednisolone, took my first dose at 2pm, by 6pm I was bounding up the stairs, by next morning I was a new woman. Saw a rheum some months later, she agreed I had PMR, and could not explain the ‘normal’ bloods, just stated that it happens sometimes.
Me too; symptoms PMR/GCA with normal CRP and SED RATE ; no other inflammatory markers except PR3 antibody at low titre.
Hi Alliad I have not donecan update in a while because was waiting for my appointment with a shoulder specialist. He said it was possible I had unusually for bilateral frozen shoulders because of the way In which first my left and now my right shoulder pain and stiffness has evolved. In the meanrime I was chatting to two friends who had been told they had had a frozen shoulder and I realsed that my symptoms were very similar. My left arm and shoulder is improving and possibly at the thawing stage whilst right is less painful. So I am open possibility that I may not have PMR as for me I am atypical for each condition. Hearing from you who have confirmed diagnosis of PMR I am not sure I am now as generally fatigued as I was. The shoulder specialist was going to write to my Rheumy to say I would like a trial of oral steroids but I now feel I will decline this and see how I progress. All this has taken months. My Gp has been supportive but believes it is more likely but unusuallt bilateral frozen shoulders. She gave me a cortisone inj 3 weeks ago to Rt shoulder which has helped. I will update you again in a few weeks to help others going though the same dilemma.
Hello Nurse, It is still unclear (to me) what I have; symptoms consistent with PMR/GCA, with normal SED and CRP results, but positive for PR3 antibody which signals GPA. What I do know is that I had a very magical response to prednisone in hours which lasted about 6 -7months, but with first attempt at taper, vision problem ; back up to 16mg at my own discretion, saw eye Dr., felt better, but not like the first time.
Another clue: My maternal grandmother had PMR/GCA and there is a hereditary component I have read. She was up on a ladder scrubbing walls on prednisone at first. She did recover after about 2 years , got off Prednisone and lived until 92; independently until last year of her life. There was really nothing wrong with her when she died, except an old, but very sweet heart.
My paternal grandmother died of leukemia at 73 so I am very nervous about rheumatologist's referral to hematology b/c blood counts are very out of line. Rheumatologist I am sure did not look at family history with that referral.
Haha yes user name a bit of a giveaway.. another colleague told me that two colleagues she worked with on another ward developed PMR so perhaps it goes with the territory
Nice to know that someone else has had the same experience of having to push for treatment and reassuring to hear that you have responded so well. I do worry though about the loss of range of movement in my arms. I am not sure if I am restricted because of pain and stiffness and does this go with steroids?
The only point of taking the steroids is to alleviate the pain and stiffness by reducing inflammation. If pred doesn't work, it probably isn't PMR. My range of motion was getting kind of restricted in several ways, and this problem was completely reversed by pred within days.
Thanks for the reassurance HeronNS I will keep you all posted on my eventual diagnosis. Finding this site very helpful though in the meantime.
Oh I should also add that both my Rheumatologist and my GP have mentioned in passing " We could perhaps give you a trial of steroids and see if you respond....." Perhaps I should have said yes " Give me the steroids !!!" Unfortunately I am not very assertive when dealing with my own medical issues although I can be a tiger when I need to act on behalf of a patient.
Ah well, you need to....and you will... develop that self-advocacy. You have the skills (on behalf of others), you just need to transfer them. I’m a bit the same. But when all is said and done, you’re the expert in YOUR ‘disease’
If rheum &GP have suggested steroids, go grab them. They wouldn’t have suggested them if they weren’t thinking PMR. At a moderate dose (15mgish) they will be diagnostic, and if you have PMR then I think you’ll be surprised how much you loosen up after your first dose or two.
Have they checked your thyroid levels? VitD?
Yes Thyroid normal too but perhaps as you mentioned my bloods were higher for me. I have never had an ESR or CRP before so no way of knowing what my normal might have been.
I am not sure what HIIT is but do you do it to alleviate stress? Because there’s your culprit ( stress). This is not a muscular disease although it can feel like it. It’s a form of Vasculitis. Blood tests are normal, I think, in 20% of PMR cases.
Your symptoms sound familiar, but other things can present like that. Glad you’ve got a Rheumatologist, hope it’s a good one. High intensity exercises would not cause PMR unless they were part of a pattern of driving yourself too hard for too long. Unscientific theory bourne out by 2 years on this forum.
"HIIT" is High Intensity Interval Training. You have intervals of pulse increasing exercise with intervals of slower exercise. ie: run for 2 minuets then walk for 2 minuets then repeat (simplified explanation). It is very effective.
Now I know I did it with my daughter about 10 years ago. I felt very flexible. We went every week for 2 whole years.
Hi justcallmenurse, My GCA symptoms came on suddenly as well... went to work one day, fit as a fiddle, and developed a nasty headache! That was that; 19 days later I was diagnosed with both GCA and PMR (was told I had probably has PMR for 18-24 months based on my GP visits and complaints). My C-Reactive has always been normal and my ESR only slightly raised. They never did a scan or a TAB, so the only conclusive evidence that I have GCA and PMR is the fact that my symptoms responded to 60 mg of Prednisolone within like 12 hours!
I wish you the best of luck and really hope that it's not PMR, but if it is... you are in the right place! There are a lot of really well informed, experienced people on this forum who readily offer help, advice and support.
Best of luck.
Hi - I had normal bloods, but the perfect PMR set of symptoms. I was diagnosed on the speed of improvement following two doses of pred. Interestingly Soraya_PMR, I’m also a nurse (or was!)
Nurses complaint maybe thanks for your response
Being married to a David is also a risk factor it seems...
When I was nurse training (many moons ago) a haematologist said that they didn’t really want nurses blood for transfusion. Reasons: we worked too hard (they’d prefer uni students!!!) and we met so many bugs, we had LOADS of antibodies in our blood. Musing aloud now.....I wonder if our immune systems were overworked? Did they become super strong, and having nothing new to fight against became over vigilant and fought ourselves?????
Yes maybe we are just overloaded and our bodies cry "STOP" perhaps me trying the HIIT session was a step or a star jump too far. Looking back I had been getting more tired but was trying to hard to maintain my fitness levels thinking that maybe that would help. Would I fell better if I shifted that half a stone? Trying trying trying to push myself as well as doing night duties followed by days. All 12 hour shifts on a very busy ward.
Interestingly I think my mother might have had this condition but this was back in the early 70s. She had pain in both arms and shoulders. Had a stressful life with an elderly mother who lived with us and was developing dementia. Poor Mum then developed cancer and so I never knew if the ? PMR resolved. She was told it was rheumatics.
I have also had a bucket load of stress in the past 4-5 years
Well that seems to me an almost specific aetiology for this disease.
Bucket load of stress,12 hour shifts...sounds like what I pushed myself through,keep us posted🌸
PMRproAmbassador
Up to 20% of patients with GCA/PMR have blood markers that are in normal range. That doesn't actually mean they are normal for them though - I discovered recently that during a particularly bad flare my ESR rose to 18 for some time. That is still on the normal range - but my own personal normal is in low single figures, 4 to 7 is usual.
If they offered pred - take it up! And don't let them be put off if you don't have a 6 hour magic result as Soraya and I had - 70% of the stiffness usually goes rapidly, if there is much bursitis which often goes with PMR it can take months for that to go completely.
And before I forget, even if the pred makes you feel you can, pass on the HIIT classes! The pred is only mopping up the inflammation and relieving the symptoms. It does nothing to the underlying autoimmune disorder that is attacking your body tissues and making you feel you have flu and your muscles intolerant of acute exercise. Keep to walking for a while. You will do more without inducing excessive DOMS (delayed onset muscle soreness) that then takes up to weeks to resolve. Just not yet if it is PMR.
That is really helpful advice. Thankful PMRpro. Def giving HIIT a wide berth..for good!! Lol
Have been bowled over by all of you who replied and for your support. I will keep you posted on the response I get following my letter to my Rheumy consultant et al. If he offers me steroids I will keep you posted on my progress . Many thanks. Finding this site and helpline has been such a help and nice to feel Im not going mad.
I hope you get the Pred miracle. It’s almost biblical.
It is a miracle, but doesn't last; as soon as you try to taper, all hell breaks loose for many of us.
I am sorry that was your experience Alliand. I have had a steady, smooth, slow taper from 20 mgs to 7 mgs over a two year period. No flares or anything bad. However, I appear to be stuck at 7 mgs for now.
Hello SheffieldJane,
I am at 8 mg now, but arrived there at doctor's instructions too fast. I am waiting for a new rheumatologist appt this week. First time, I arrived at 8 mg was with a very slow taper and still had a temporary loss of vision.
Now at 8 mg for the second time from original 16, again; debiltated by fatigue. Last evening, it was warm, and I went outside to cut some daffodils from the garden; a short walk from the front of my house to the back yard, cutting a few flowers, left me exhausted and breathless.
If you took 2 years to go from 20 to 7, and it was steady and smooth, then my doctor is going too fast. I am still on once a week methotrexate.
Did your blood counts remain normal along your course, if I may ask? Are you feeling well on 7 mg? Taking any other meds for PMR? Thanks much. It's good to have others as a measurse.
As far as I know my bloods where within normal parameters as soon as the initial inflammation was controlled. I never reduced more than 10% and made use of 1 mg tablets cut in half. I took a month between each drop and stopped at the first sign of trouble. The last time I tried 6.5 I felt quite ill. I think it was my Adrenal Function. I will see what my Rheumatologist has to say. I missed an appointment because she’s been ill. She is content and familiar with the dead slow nearly stop method of tapering. I think it’s pinned on this site.
I don’t take any other meds for PMR, I would be reluctant to add more to the mix. I feel far from normal and am tired a lot but the pain and stiffness has gone.
I would be very anxious if I had temporarily lost the sight in one eye and would immediately think I had got GCA and would go straight to hospital.
Just realised that we are on an old thread!
Depends on how you try to reduce - many people who have that experience have found that when they reduce "our" way, all hell does NOT break loose!
What is exactly "your way"? I understand you have been dealing with PMR for many years; how well do you feel now? Do you take any other meds for PMR? Do you also have GCA? Thanks.
I take nothing other than pred for the PMR - only pred works for PMR and you need enough to manage the symptoms. Pred is your painkiller in PMR. I feel well, there is relatively little I want to do that I can't do and after all I am nearly 66.
On the forums we "push" slow tapers. There are a few different versions, you've probably seen mention of DSNS which is Dead Slow and Nearly Stop which is one I developed based on an approach a gentleman known as Ragnar the Swede had used to get from 5mg to zero many years ago!
healthunlocked.com/pmrgcauk...
Some people seem to think it is complicated but there are many people who have got to zero who say it was what got them there. Done consistently and being aware of returns of symptoms most people get to zero without ever having a major flare and having to return to a much higher dose. The secret I believe is you only ever challenge your body with the new dose for one day at a time and then have a few days at the old dose. You never have time to develop a flare in the first few attempts at the new dose so if you have steroid withdrawal pain it is obvious and you know how it feels. It is being used in a clinical study in the UK so is medic-approved.
I only officially have a diagnosis of PMR - but at least 2 top PMR rheumies and a physician who specialises in GCA agree that I almost certainly had LVV/borderline GCA originally as I did have scalp tenderness, jaw claudication and other typically GCA symptoms which all disappeared with 15mg pred:
think you have all the answers from the others..but just want to add I hope you get some relief quickly. Sounds like PMR to me and the meds will tell the tale. In the meantime if you go to my profile and look at my posts there is one called RELAXATION (maybe also in my profile) and a link to it. Reduces Stress. Helps you sleep!! Who knows.. perhaps enlightenment. haha.
Yes everyone answered the questions but agree very possible to have PMR and or GCA with normal bloods. I have both GCA and PMR and the highest my ESR was was 16. My CRP is normally in the range of -1 to 1 although I think it has crept up to 3 ( all in normal ranges) Except as has been said what is normal? If we had not had these readings before the onset of these conditions how do we know what is normal for us? If you have been offered steroids just to see if they make a difference why not try them? I know I was very reluctant to start them myself but as each week went on I just felt worse and worse and thought I needed to just give them a try. Do let us know how you progress. Best wishes Jackie
I also had no increase in inflammatory markers, but text book PMR. As well remarkable with 48 hours of fairly pain free. New symptoms have reared their ugly head as new onset temporal headache. Seeing MD at 4 pm, EST ( daylight savings) Supposed to be headed to Ireland with my siblings on Friday for a once in a lifetime trip that we are all off work. Time will tell. Thanks
Hi All
I hope I am posting this correctly so that all of you who helped me with my initial Qs will see this. I have seen a shoulder specialist today as the Rheumy referred me to him to rule out a mechanical injury. He informed me that it could be frozen shoulder but less likely as my pain and symptoms have been in both shoulders. I can see that my symptoms could be this but he and I agreed to ask Rheumy to give me a trial of steroids first and see if I respond and then +/- cortisone injections. So now I have to wait until the letters go from him, to the Rheumy and if he agrees to a trial of oral steroids then to my GP and off I go to see if it works.
One thing I wanted to ask, apart from my normal bloods, I haven't really lost weight. In all other respects I appear to fit with PMR although I can see that it could be frozen shoulder too. Does everyone loose weight with PMR?
Does anyone know if oral steroids would help with frozen shoulders?
I did but er Pred soon took care of that. Watch your carbs and cut out sugar from the start, I wish I had. A number of posters have had “ frozen shoulder” mooted to them as a diagnoses. I hope your steroid treatment has a quick and positive result. I hope you don’t have to wait too long. I guess steroids would help most things but it can be dramatic with PMR/ GCA.
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