Hey up x

[Northernnugget]

Many of you read my story regarding being diagnosed with Fibro and questioning the diagnosis on account of having a sister who has responded to steroids for PMR that doesn't show in blood work I was far to young at 49 three years ago according to the Rheumatologist at the time and there was no markers in my bloods either So I had a recent last appointment with Rheumatology and after much argument he referred me for a pet scan

This is the result

"There is no evidence of metabolically active malignancy or large vessel vasculitis. There is mild increased metabolic uptake within the interspinous ligaments of the lumbar spine adjacent to both ischium, both hips and shoulder joints. These can be suggestive of mild PMR"

So not conclusive but he has precribed prednisolne

It hasn't taken all the pain away but I do feel much improved particulary with the morning stiffness

Thanks guys xx

[SheffieldJane]

Vindicated! You still need the level of dose that relieves the symptoms though - battle 2.

[Northernnugget in reply to SheffieldJane]

Oh no you mean another argument?

[SheffieldJane in reply to Northernnugget]

You can do it!

[Northernnugget in reply to SheffieldJane]

I'm supposed to start reducing today The course is for 10 months Do you have any recommedations I should go to the doctor with?

[DorsetLady PMRGCAuk volunteer]

Maybe have a look at this - and you'll see PMR [mild or otherwise?!] can last a lot longer than 10 months - and many patients under the age of 50ys and no raised inflammation markers to boot!

healthunlocked.com/pmrgcauk...

[Northernnugget in reply to DorsetLady]

I have just literally been for a Dexa scan and the clinician mentioned I'd likely to be 18 months dependent on how I felt on the tapering x

[DorsetLady PMRGCAuk volunteer in reply to Northernnugget]

I'd likely to be 18 months dependent on how I felt on the tapering x

Hmm..let’s see .. hope they’re right.,

[Northernnugget in reply to DorsetLady]

Oh dear😧x

[DorsetLady PMRGCAuk volunteer in reply to Northernnugget]

At least you got a DEXA -many struggle to actually get one -let’s hope it gives a good result. Please let us know.

[Northernnugget in reply to DorsetLady]

The clinician seemed to think it looked fine but obviously it has to be checked further x

[DorsetLady PMRGCAuk volunteer in reply to Northernnugget]

Please let us know reading when you get report and any recommendations..

[PMRpro Ambassador in reply to Northernnugget]

They did did they? That is pretty optimistic and sounds more like a textbook opinion ...

[PMRpro Ambassador]

As SJ says - "See, I told you so!!!!!!!" There have been a few rheumies recently who have had to eat their words in the face of a PET-CT - if only they were easier to come by.

The next battle is going to be the 10 month nonsense! What dose has he started you on and how are you to taper?

[Northernnugget in reply to PMRpro]

I've started at 15 for two week then 12.5 for anther two weeks Drop straight to 10 for 4 weeks then reduce by 1 mg every 4 weeks until stop altogether My last dose of 15 was meant to be today x

[PMRpro Ambassador in reply to Northernnugget]

I hate to break it to you but that is a downright breakneck taper to start with and the other really important point is you are NOT relentlessly tapering to zero come what may. You are actually titrating the dose to identify the lowest effective dose having cleared out the accumulated inflammation with the higher doses. That is the lowest dose that gives you the same level of symptom relief as the starting dose did. Always supposing it was good. And how low you get at any point will depend on how active the underlying autoimmune disorder that causes the inflammation is. Every morning it creates a new batch of inflammatory substances and inflammation. The dose you need depends on several factors and varies from person to person. The pred has cured nothing, it is a management strategy and one you will need as long as the cause of the PMR is active - and it is almost never burnt out in under a year. Half of patients take up to about 6 years to get off pred, the rest even longer. About a third get off pred in up to 2 years but there is no way to forecast who falls where.

This is a brand new set of recommendations for treat to target management of PMR which has been adopted internationally. It is unlikely your doctor is familiar with it - it is worth bringing it to their attention.

ard.bmj.com/content/early/2...

How free from symptoms are you now?

[Northernnugget in reply to PMRpro]

The morning stiffness has gone and the neck pain much improved but I still have the wrist pain and general widespread pain I seem to have a flare up of knee pain too I wonder if they'll argue and say our findings are suggestive and not conclusive so therefore it must be Fibro x

[PMRpro Ambassador in reply to Northernnugget]

About how much have you improved? I don't think they started on high enough a dose, 20mg would have been better, and 2 weeks at 15mg isn't enough to make up for that, Fibro rarely responds to pred - and it isn't an inflammatory disease which the PET-CT has demonstrated so he can't argue with that. I fear he doesn't understand radiology speak in reports. The inflammation is there, it is the sort typical of PMR, there might be other things causing it but the most likely thing on the menu is PMR. If it looks like a duck, quacks like a duck and walks like a duck, the chances are it isn't a chicken ...

[Northernnugget in reply to PMRpro]

I feel as though there is arthritis all over my upper body I still have the wrist pain and my dodgy knees but I do feel much better in myself I'm meant to be reducing today but cards on the table I have a naughty couple of 5mg strips to prolong the 15mg for an extra week My sister sent them x

[OldGolfer in reply to PMRpro]

This article is just what I need to help explain my issues to my doctors and friends. Thank you PMRpro for this and all the other useful information you supply for this forum.

[Tiggy70 in reply to Northernnugget]

Hi, your tapering schedule is almost exactly the same as I was given at the start of my PMR journey two and a half years ago. For me it was way too fast and I ended up yo-yoing all over the place. At that point unfortunately I hadn’t discovered this wonderful forum. I do hope it works for you but if not listen to what your body is telling you.. if you go too fast as I did you are the one having to live with the pain and aching not your Rheumatologist!! Good luck 🌸

[Doodles2013]

I too was just 50 when I was diagnosed. My CRP levels were slightly high but luckily I got a doctor who somewhat specialises in PMR. I started on 15mg for 3 weeks. Then 12.5 for 3 weeks then 10 for 6 weeks then tapering down 1 mg every 6 weeks. My pain went within hours from first taking steroids. I got down to 6 mg and some pain came back so have been back at 8 for 3 weeks. Pain gone again. Tapering back down in 3 weeks and hopefully will be successful as I really want to get off then ASAP. Hope they get you sorted x

[Northernnugget in reply to Doodles2013]

My pain hasnt totally diminished but the morning stiffness has gone and I do feel better within myself x

[Hoofprints]

I am pleased you have finally got a proper diagnosis and I hope your journey is much smoother from here on in.You were fortunate to be given a PET scan. Do you mind me asking what swayed your GP to give you this test? I would love to get one as I'm desperate to 'prove' I have inflammation in order to be given a trial if steroids.

[Northernnugget in reply to Hoofprints]

The Rheumatologist basically diagnosed me with Fibro and discharged me back to the doctors care with the grace of a last appointment within a six month period After taking the advice of the good people on this forum I went to see him armed with information regarding people have been diagnosed with PMR under the age of 50 without raised CRP The argument I put forward was had my sister not been given steroids to try for suspected PMR She would have had the diagnosis of Fibro and would still be in pain She had no inflammatory markers in blood work either I asked to be trialled on Pred for a couple of weeks He then offered the pet scan x

[Hoofprints in reply to Northernnugget]

Thank you so much for explaining that. I'm having similar battles with a different form of vasculitis, but have for 20 years wondered if I might have sero-negative PMR. I haven't been able to persuade anyone other than a very good neurologist that I have ongoing inflammation in my tissues. He appealed to my rheumatologist to put me on a low dose of immunosuppression, but the rheumatologist has repeatedly refused even him, citing my now normal blood tests.

At my most recent appointment, the rheumatologist admitted that he thought I had a low level of inflammation in my muscles, but still refused to try me on a trial of steroids.

He has now set my review appointment for ages away - next February - and I am desperate, feeling iller all the time. The hydroxychloroquine isn't working enough.

I'm glad you got the help you need. One remaining question - how did your sister persuade a doctor to give her a trial of steroids?( I'm assuming it was a GP who did this?)

Thanks

[Northernnugget in reply to Hoofprints]

She was in her early 50's at the time and was just generally struggling Doctors took some bloods but nothing showed She was then referred to Rheumatology and had an appointment within a couple of months The Rheumy said it sounds like PMR and gave her Pred to try It worked within 3 days and was free of it until last year when she had a flare but this time the doc prescribed the Pred I dont think my Rheumy would have trialled me either without the Pet scan x

[Hoofprints]

Thank you so much for taking the time to reply. If only we could have more GPs like your sister's GP! I hope you both start to feel and do a lot better now with proper treatment. Onwards and upwards 🤞