So had PET scan still pain in every joint

[PMRHortons]

Had my PET scan and the results were clear, I my specialist who did a series of Xray s basically all my joints, these were clear. He admitted he was at a loss and has referred me to an auto immune specialist who I see on Monday. Mean time he says prednisone is not indicated in my case and put me on Amitryptiline and 2 types of pain killer. I continue to have severe pain in my hands and the medication seem to dull the pain in my other joints. I’m usually very active but exercise is very difficult at the moment. I have been diagnosed with PMRGCA but my specialist rheumi convinced that this is not a flare up of that. Anyone got any thoughts my blood are pretty much normal, I just have severe pain in my joints

[SheffieldJane]

Are you still in France? I would be interested to learn more about the Autoimmune Specialist when you’ve seen them.

Are you completely off Pred.?

The not knowing must be hard but it has to be good that a PET scan was clear. Good luck!

[PMRHortons in reply to SheffieldJane]

Yes I’m off the prednisone but wish I wasn’t as when I had a short course the pain in my joints went completely.

Yes I’m still in France and I’ll update after I’ve seen the new specialist.

[DorsetLady PMRGCAuk volunteer in reply to PMRHortons]

I think that may answer it then. What dose/duration was your short course? And has no-one taken that into consideration?

As for bloods, as we’re always saying (and confirmation from HeronNS) - they are not raised for everybody - symptoms are the key - first, last, always!

[PMRHortons in reply to DorsetLady]

I had a course of 60 2 days 40 2 days finished with 20 for 2 days. By the end of the 1st day the pain had reduced by 80% the second day I was pain free. Within 2 weeks of finishing the pain had returned in all my joints. Bizarrely always starts in 2 fingers of my right hand

[DorsetLady PMRGCAuk volunteer in reply to PMRHortons]

Yes well the 60mg and maybe the 40mg would have blitzed virtually any pain, whatever the cause - so maybe didn’t prove as much as it could have unfortunately.

But if it returned within 2 weeks, like you I would plump for a flare! It just a matter of convincing the doc! So good luck with that.

[PMRpro Ambassador in reply to PMRHortons]

In which case - how on earth can anyone say pred isn't appropriate in your case???? Does 20mg do the job?

[PMRHortons in reply to PMRpro]

I think if I’d carried on on 20 it would be fine

[PMRpro Ambassador in reply to PMRHortons]

You woud probably have been able to reduce further if you'd gone about it the right way. But you doc is wrong. If pred manages the symptoms that is what is appropriate and amitryptiline probably isn't.

[PMRHortons in reply to PMRpro]

I thought that I’m going to push the point with the specialist on Monday. I took the prednisone like that over 6 days on the GP’s instructions, it was to get me over a bad phase before the PET scan, which it did but she said I could not continue on it as it would interfere with the scan. At the time I was struggling to get up in the morning as the joints were so stiff and painful, it’s much the same now current med regime barely doing anything

[PMRpro Ambassador in reply to PMRHortons]

So pointless! Doesn't matter WHAT it is, you need the drug that works. If pred worked - it suggests this is PMR-type inflammation. And how much pred were you taking when before the PET scan?

[PMRHortons in reply to PMRpro]

I saw the Medicin Interne at Limoges CHU. The appointment lasted for well over an hour and the specialist took his time in getting a full history from me. He thinks what I have is an Atypical flare up of PMR he says that in roughly 20% of cases this is a possibility I.E. joint pain and nothing showing in blood work in terms of inflammation. He views the clear PRT scan and X-rays as a positive. We discussed treatment and have settled on 15 mgs of Prednisone to start reducing over time to 5mgs. I told him that this as far as I’m concerned is best option for me as I’m lucky and the previous 2 times I have taken Prednisone I have not suffered any serious side effects I can just get on with my life. He stated that he would be happy to leave I at 10 as this is a small dose and I have previously self prescribed and managed on this when I was stuck in Asia with a relapse. He asked if I wanted to continue to see him or go back to Rheumi I decided to stay with him as if I continue to have atypical symptoms he is going to be able to pick them up.

Today after taking first dose yesterday feeling benefit already in terms of reduced pain and stiffness.

[PMRpro Ambassador in reply to PMRHortons]

Now THAT sounds seriously promising!! Maybe he'd like to write a paper on that???????

[PMRHortons in reply to SheffieldJane]

Hi Jane yesterday I saw the Medicin Interne at Limoges CHU. The appointment lasted for well over an hour and the specialist took his time in getting a full history from me. He thinks what I have is an Atypical flare up of PMR he says that in roughly 20% of cases this is a possibility I.E. joint pain and nothing showing in blood work in terms of inflammation. He views the clear PRT scan and X-rays as a positive. We discussed treatment and have settled on 15 mgs of Prednisone to start reducing over time to 5mgs. I told him that this as far as I’m concerned is best option for me as I’m lucky and the previous 2 times I have taken Prednisone I have not suffered any serious side effects I can just get on with my life. He stated that he would be happy to leave I at 10 as this is a small dose and I have previously self prescribed and managed on this when I was stuck in Asia with a relapse. He asked if I wanted to continue to see him or go back to Rheumi I decided to stay with him as if I continue to have atypical symptoms he is going to be able to pick them up.

Today after taking first dose yesterday feeling benefit already in terms of reduced pain and stiffness.

[gifford7]

It appears you may have a relapse or flare of the PMR even tho the bloods are normal which tends to be confirmed if the prednisone treats the pain. see:

ard.bmj.com/content/74/10/1799

2015 Recommendations for the management of polymyalgia rheumatica: a European League Against Rheumatism/American College of Rheumatology collaborative initiative

"D. The role of risk factors for relapse/prolonged therapy is not clear yet. Baseline factors that were associated in low to moderate quality studies with a higher relapse rate and/or prolonged therapy in PMR studies were: female sex,24 ,26 high ESR (>40 mm/1st hour)26–31 and peripheral inflammatory arthritis.32 A number of equally low to moderate quality studies, however, failed to demonstrate an association between these factors and relapse/prolonged therapy.27–30 ,32–44"

Another link: uptodate.com/contents/clini...

Clinical manifestations and diagnosis of polymyalgia rheumatica excerpt:

"Atypical presentations — In atypical presentations, such as patients with asymmetric symptoms or an ESR less than 40 mm/hour, establishing the diagnosis is more difficult [32-34,43]:

●In younger patients, inflammatory rheumatic diseases that can mimic PMR warrant careful consideration of other diagnoses. (See 'Differential diagnosis' below.)

●Symptoms can be asymmetric early in disease, beginning in one shoulder or hip, but soon become bilateral.

●As noted above, a small percentage of patients with bona fide PMR have lower ESRs at the time of diagnosis. Although there is less experience with use of serum C-reactive protein (CRP) testing to establish the diagnosis of PMR, it is reasonable to substitute an elevated serum CRP (above the upper limit of normal for the testing laboratory) as a criterion for PMR if the ESR is less than 40 mm/hour. A normal or modestly elevated ESR by itself should not deter consideration of a diagnosis of PMR in the appropriate clinical setting, but the combination of a normal ESR plus a normal CRP renders the diagnosis much less likely. (See 'Laboratory testing' below.)"

[PMRHortons in reply to gifford7]

Thank you