hoping

[Nanatoo]

I saw my GP 5 weeks ago as I had been having terrible pains and stiffness since Christmas. A friend at my bowls club said it sounded like pmr which she also suffers from and told me to get it checked out. GP was pretty convinced I have pmr but blood test proved inconclusive so referred me to a rheumatologist. I have the appointment on Thursday and am really worried in case they won’t give me steroids and another holiday will be ruined because of my plodding walking and aching body. Has anyone else been given steroids when they’ve had a negative blood test?? Am I going to have to beg to be prescribed them?

[DorsetLady PMRGCAuk volunteer]

Between 7-20% of patients don’t have raised markers (depends what report you read) -so symptoms should be the key. ..and a trial of Pred for a a couple of weeks would be the way to go, even if Rheumy is one of those that places a lot of credence on blood results.

Hopefully he will test for other things as well, or has GP already done that?

[Nanatoo in reply to DorsetLady]

GP just tested for pmr and tbh she seemed really disappointed that the blood tests were negative so referred me straight away.

[DorsetLady PMRGCAuk volunteer in reply to Nanatoo]

Okay -so she thinks it’s PMR.. let’s hope Rheumy does as well .

Not wishing it on you, but you know what I mean 🤔

[piglette]

I do hope your rheumatologist knows that not everyone has raised inflammation markers with PMR.

[Mayadill]

hi, the first line on the NICE page Diagnosis is:

Polymyalgia rheumatica (PMR) is diagnosed by identifying core features of the condition, excluding conditions that mimic PMR, and by a positive response to oral corticosteroids.

So you could point out that giving you Pred for a couple of weeks is a test in itself. It then continues:

Raised inflammatory markers are supportive of a diagnosis of PMR, although if the clinical picture and response to steroids are typical, the diagnosis can be made with normal inflammatory markers.

cks.nice.org.uk/topics/poly...

[PMRpro Ambassador]

The highest my ESR reached was IRO 16-18, still within the greatly abused term "normal range". The lowest we have found it to be was 4. Up to about 20% of patients have an ESR that lies in the so-called normal range - but that normal range is not the range that is OK in a specific patient, some lie in low single figures, others in the upper teens, but those are normal levels for THEM, not everyone lumped together.

[Flutterbies57]

My blood tests have never revealed anything . My Doctor and Chiropractor thought I should try steroids to see if it was PMR. Incredible improvement began within 12 hours and continued . That is what my diagnosis was based on

[MamaBeagle]

Hello, my blood tests all came back "normal range". But...this is my second time around with PMR. Having been on this forum since 2018 I was aware that symptoms rule and not necessarily blood tests! I'm not sure if Doc gave me two weeks of pred to keep me quiet or because she was influenced by my previous experience and knowledge!

The pred worked like magic, as it did before.

Do stay on the Forum, if it turns out you do have PMR.. There's lots of knowledge on here about all aspects of living with PMR.

Good luck.

[alangg]

My blood tests were inconclusive but my GP started me on Prednisolone anyway saying that if it worked, it probably is PMR and if it doesn't, it probably isn't and you can stop taking it after a week without any problems. It worked but it took nearly 3 years before I was symptom free.

[Smithie49]

Welcome to the club!!!! Sorry you've had to join us. I had no raised blood markers and the first GP refused me steroids. In desperation I took someone else's very out of date prednisolone and was able to move within hours. This prompted another GP to prescribe it. The rheumy I eventually saw was brilliant. Good luck.

[DBE46]

My GP gave me them before my test results were back as a differential diagnosis. The change in me was almost miraculous .

[Loyd]

I feel for you and was in your exact situation 4 years ago!

My doctor originally thought I had PMR because of symptoms and raised inflammation markers but requested one more blood test. When this came back without significant inflammation she decided I did not have PMR and would not put me on steroids.

I was devastated because life had become unliveable. What I did next is definitely not to be recommended but a friend offered me 15mg of pred for a week. Miraculous cure!!

I returned to my doctor who was shocked I had taken a friends medicine but accepted I had PMR. And prescribed pred.

I am definitely NOT recommending this route but perhaps my story could be recounted to your doctor? I do not understand why they don’t use a two week trial as a diagnostic tool.

I am now down to 5mg and stable after 4 years of seesawing up and down with flairs. I hope you get your self sorted soon. Best of luck.

[Wonderfullifeandmore]

I hope you get it sorted and wow an appointment with a rheumy so quickly, here in Kent it’s a 34 week wait. Good luck with your diagnosis.

[Abbey17]

yes me, had it for a few years now and only twice were my blood slightly higher. They have always otherwise been normal. Both GP and Rheumy have diagnosed and treated me with PMR

[Toods]

I had the same symptoms and thought I had pmr,but it turned out to be axial spondyloarthritis as diagnosed by a rheumatologist. Very different medication required but now largely stiffness and pain free. Good luck with your appointment.

[Paul76]

My blood tests have always been normal but I had every other marker including a rapid response to steroids. One rheumie said that I couldn’t have PMR with normal bloods and I eventually had to go private and was told that I had a classic case of PMR. The private rheumie acknowledged that some GPs and consultants don’t seem to realise that up to 20% of patients have normal bloods throughout. Perhaps you may be lucky but be forearmed with this stat. Good luck.

[sidra1968]

I had normal markers...ironically on the 2nd blood test after 4 weeks on Pred they actually went UP a tiny bit, I think that helped convince him..BUT when I went like you did for the first time, I was armed with the knowledge from this site and said "20% of PMR patients can present with normal labs", when he kind of scoffed and he then admitted it was true. He first ruled out other diseases with a chest x-ray and 4 blood tests sent to Mayo Clinic-and I already had an MRI done a month beforehand with an orthopedist AND an abdominal CT scan with an endocrinologist (more things ruled out prior to seeing he GP).

He agreed to a month trial of Pred, and it worked..then (like I said) the bloods were actually a tad higher so we continued on..also, I did have very good pain reduction, which in itself is a diagnostic tool. Good luck and if all else fails, suggest/demand a 2 week trial!

[Gimme]

I don't have raised inflammatory markers and I have been tested and re-tested several times since, but I am on pred for PMR. I started to respond to them within a couple of hours and by the end of the day was totally pain free. They don't just rely on the markers, they go more by the symptoms, your age, and the response to pred, in my experience. My GP was very keen to get me onto pred to see if I responded.

[PMRpro Ambassador in reply to Gimme]

Not don't - shouldn't! A lot of them rule out PMR in someone with "normal" markers.

[Gimme in reply to PMRpro]

I have been very lucky with my medical team. I couldn't fault their care, so far.