GCA and now really painful Polymalgia

That’s right is there a separate test for Polymylgia ? I’ll try get hold of my immunologist to have a blood test I really feel I can’t go by my blood test I have to go by how I feel all I know I just feel sore all over.

There are no definitive tests for either GCA or PMR - other than the TAB when it is positive because they found the giant cells they were looking for. But a negative TAB doesn't mean you haven't got GCA, it just means they didn't see giant cells. 

PMR is a clinical diagnosis, made on the basis of the symptoms and response to pred  - sometimes backed by the ESR and CRP being raised showing there is inflammation present but up to 20% of us never have the raised markers and many of us don't have raised markers while still on pred even though we have all the symptoms.No-one knows why - it is just so.

The first thing to do is go back up on the pred a dose a bit and see if that helps, if it does it increases the likelihood of it being PMR coming to joint the party - and should stop any doctor trying to tell you it isn't PMR but fibromyalgia. It NEVER responds to pred. Some people have "just" GCA or "just" PMR - but sometimes the other bit comes to join in later. And there are overlaps anyway:

https://academic.oup.com/rheumatology/article/56/4/506/2631560

PMR lasts a median of 5.9 years so don't let a doctor say it can't be after this time:

https://www.medpagetoday.com/rheumatology/generalrheumatology/66912

Why do you feel you can't go by your blood tests? And I'm curious - why under an immunologist?

When my ESR was climbing for the last 4 tests it climbed from 14 to 17 I was on 8.5 pred then I went to 10 pred felt better that was 2 weeks ago now have the shoulder knee hand pain and real stiff in mornings.  I’m with imunologist cause when I first went to hospital say vascular surgeon he passed me to immunologist and stayed with him. Been happy with him i have direct contact with email if need scripts or blood test. My local gp is hard to get to see the same one I’m in a country town and the docs don’t stay 

If he's on the ball and you get on well - that's all that matters. 

I wouldn't say those ESR figures were "climbing" significantly - but symptoms ALWAYS trump blood tests. They are no more than a guide in this case - and as I say often don't do much if the patient is on any pred at all.

Yep levels not to high but I felt not right and when took extra 1.5pred wow worked great and felt good and now this totally over all of it but hey bring it on and hopefully sort increase out today.  real bad this morning had to think about going to the kitchen really stiff, and for the last week l've got this real bad taste in mouth still there?  thankyou for your info it is of great help.  I'm 54 my mums 80 so when we go do anything together we go at the same pace might get us a double scooter Ha

Spoke with Doc he thinks Polymyalgia also so we going to try 15mg pred for 3 days see if it makes a difference if not well prob have another plan

3 days at 15mg may not be enough - don't let the doctor rule PMR out without trying a bit longer or a bit higher. The usual criterion is a week for most rheumies - and the most recent guidelies say "the lowest effective dose in the range 12.5-25mg".

Fingers crossed though! 

Yep you’re right I will keep all up to date as this venture plays thankyou Eileen 

Been on 15 pred for a few weeks now has been working until now but I have chronic PMR pain I feel to try higher not that I want to but doc not agree to increase.  Bit confused on what to do can’t just put up with this pain neck shoulders hips legs ah 

If you have plenty of pred you could try 20mg and see if it makes a difference. Then, if it does, you could go to the doctor and show them this:

https://www.rheumatology.org/Portals/0/Files/2015%20PMR%20guidelines.pdf

the most recent guidelines for managing PMR. And point out Recommendation 3: "The panel conditionally recommends using the minimum effective GC dose within a range of 12.5–25 mg prednisone equivalent daily as the initial treatment of PMR. A higher initial prednisone dose within this range may be considered in patients with a high risk of relapse and low risk of adverse events, whereas in patients with relevant comorbidities (eg, diabetes, osteoporosis, glaucoma, etc.) and other risk factors for GC-related side effects, a lower dose may be preferred. The panel discourages conditionally the use of initial doses #7.5 mg/day and strongly recommends against the use of initial doses .30 mg/day."

and confess you tried, and it worked. If it didn-'t - no need to say anything...

Hi Eileen spoke with Doc and Gp and both want me to drop 1mg which will make 14 from 15 still got pain somehow i get the impression that they think too much pred can make you feel this way hey I'll drop the 1mg and see how it goes well it can only go 2 ways hurt bad or feel better who knows I'll keep you updated. My markers were 6  from the 17 which went down when I took the 15 pred.

Think is, you do have to get your pain to be as good as it's going to get.  Are you at least 70% better than you were at the beginning?  Has the pain worsened at all overt the last few days?  If you are 70% better, and the pain level is stable, then I think you could try the 1 mg drop.  But if you aren't feeling that much better, or if things have got a bit worse lately, you should try the higher dose just to get things properly under control.  Reducing too soon will result in eventually taking more pred than if you just went very slowly from the beginning, always using your symptoms as the guide.  Blood results are helpful, but symptoms rule.  Eileen has given you the link to a study which shows that long term low dose pred is not as damaging as once thought.  And low grade chronic inflammation is bad for us, so pred is what we need.  It does get better, but it takes time.  Doctors can just be so darned impatient|!