Hi All, First time poster on this forum! Similar to most complicated case theme!

[Sonofjimmy]

I recently stumbled across this website while desperately searching for some explanation into PMR after my farther was diagnosed with it about 5 weeks ago following a night in A&E due to 10/10 pain around his hip & groin area. I believe that this group has provided my family with critical information that has helped us have a basic understanding of the condition (Something that has never been provided elsewhere)

August 2016 my 68 Y/O farther was three years into his deserved retirement when he began to suffer pain in both arms and hands. This led to frozen shoulder diagnosis and tennis elbow diagnoses which was treated with what my farther explained as a magic steroid injection. Post injections my farther would resume normal service for about four weeks at which point he would be a 9/10 pain score again in his arms and hands.

By December my farther had been diagnosed with R/A and was prescribed with MTX which was started in then first week of 2017.

Over the last five months my fathers health has detreated rapidly to the point were yesterday he cant get out of bed some days, requires support to get when he can, ans was stuck on the stairs for wo hours last night as he could not move any of his body due to pain and fatigue. As I started with five weeks ago he was diagnosed with PMR after a bad night that ended in A&E. He was prescribed 15ml Ped and informed that tis will reduce over weeks months. I think his ESR rate was around 28 at this point. Last week my father was admitted to hospital by the R/A nurse who was concerned over his condition, during the assessment his ESR rate was 52 double than @ the start of the 15ml Ped, which was decreased to 12ml 3 weeks after he started with 15ml

Apologise for the long post & I am not sure what I am looking for with this other than documenting the events for my own digestion. As with allot of the posters, the problem we have is that multiple professionals are providing analysis independently and we struggle to get straight answers from each during appointments

Would it be possible for him to not have R/A and just PMR or GCA based on the reaction to the steroid injections late 2016. If tis is the case I cant see why they haven't started him on a higher dose of Ped?

Current conditions like most,

Fatigue and pain to the point of non movement for 14 hours a day - Worse AM

Sweating heavily at night

Whole body pain - Worse in upper areas

Trouble sleeping

Thanks

[DorsetLady PMRGCAuk volunteer]

Hi Sonofjimmy,

Sorry to hear about your father. His symptoms and initial diagnosis and treatment of frozen shoulder etc are almost exactly the same as mine - as was the effectiveness of the steroid injections! Lasted a few weeks but no more, and over the 18months I was undiagnosed became progressively less effective.The only thing I didn't have was bad elbows and hands.

From a purely personal point of view I would say GCA all the way. And if that's the case then he certainly needs his Pred to be increased - between 40-60mg is the usual, depending on the severity of the symptoms - from what you've said I would guess he needs to start nearer to 60mg mark.

Think you need to have a discussion with doctors suggesting GCA and requesting he try a higher dose - don't be fobbed off by being told he needs a TAB (temporal artery biopsy) before they will consider GCA.

If he's already on Pred that is likely to come back as negative anyway - which as we know on here does necessarily mean he doesn't have GCA. Unfortunately it's not like most biopsies - yes positive does means positive, but negative means they haven't found any enlarged blood cells, but that doesn't mean there aren't any in other arteries, or that Pred has worked and reduced them in the sample they've taken. Hope that makes sense.

Good luck, and please keep us informed.

Have a bit more info I'll send through later, using different PC at moment and cannot access.

[PMRpro Ambassador]

15mg is about the lowest end of the starting dose regimen and it is very possible that he needs more. It is also very possible that the PMR symptoms are the herald of GCA - and that would account for the ESR continuing to climb as a higher dose is almost always required for GCA (which doesn't HAVE to be associated with headache and visual symptoms). Here is a link to the latest international recommendations for the management of PMR where the starting dose recommendation is the lowest effective dose in the range 12.5 - 25mg/day:

rheumatology.org/Portals/0/...

That would be a good start - getting him onto a dose that should deal with PMR in everyone. If things still deteriorate - GCA has to be seriously considered. Does he have ANY GCA-type symptoms? And how did he respond to 15mg in the first place?

If he has been on methotrexate for 5 months and he is still deteriorating it says two things: the chances of it being RA is reduced (they usually allow 6 months before saying it isn't working) and it isn't helping with possible PMR. That could be stopped as it may not be helping in terms of its side effects.

Where in the UK are you?

[Sonofjimmy in reply to PMRpro]

All noted, thank you good information, he did not respond to 15ml really although at the time he Started on the 15ml it was after being admitted to a&e by ambulance because if the pain, what we know is his esr was 28 then and is now 52 over the last five weeks

[Sonofjimmy in reply to PMRpro]

Liverpool sorry

[PMRpro Ambassador in reply to Sonofjimmy]

You have a charity of you own and I'm sure someone there will be able to recommend a good rheumy:

pmrgcasupport.co.uk/

[Rugger]

I am the same age as your father (I'm female and have been diagnosed with PMR). My GP kept me on 15mg pred for 2 months, then 13mg for 2 months, 12mg for a month and then reducing according to my symptoms. Maybe your father needed to stay at 15mg for longer, if his pain is so severe. You will learn a lot from this forum on tapering the pred dose as he improves. Guidelines vary as to the management of these conditions and we're all different!

However, his symptoms that you describe are exactly how I felt and they do improve in time.

Best wishes to you and him.

[Sonofjimmy in reply to Rugger]

Thank uou

[Celtic PMRGCAuk volunteer]

Hello sonofjimmy, and I'm sorry to hear about your father's ongoing pain and long-drawn out search for a resolution to his pain.

PMR does sound in the right direction from your description but both that description of the "sweating heavily at night" and the "whole body pain" make me wonder about it being the linked condition, GCA.

Although I had undiagnosed, therefore untreated, PMR for a year before GCA symptoms arrived on the scene, the night sweats were unbelievable with the latter.

As well as the ESR blood test, has anyone carried out a CRP test? This is much the same as the ESR in that it checks for inflammation but many doctors consider CRP to be the more reliable of the two. Just prior to my eventual diagnosis, my ESR was 46 and my CRP 65.2. The previous year when symptoms first started, my ESR was 92 and CRP 157.

Has your father complained of any head pain or jaw pain when chewing, or any eye symptoms? These can be attributable to the temporal arteritis component of GCA and should any of these symptoms suddenly arrive on the scene, he should seek emergency advice, at A&E if necessary. The necessary steroid dose in this case would be anything from 40mg upwards to control the inflammation and thereby protect the eyesight.

If your father has 'just' PMR, then it might just be that he is in need of a higher starting dose than 15mg (20mgs or 25mgs at most) to control his symptoms or at least resolve around 70% of his pain.

I wish your father luck in getting to the bottom of this - meanwhile, he's blessed to have you there in such great support of him.

[Sonofjimmy in reply to Celtic]

Many thanks appreciated, I will check his CRP

[PMRandRA]

I have both RA and PMR so I am told!

Do I though? The books tell us that the pain Of RA soon creates distortion of affected joints. Mine hasn't done that, after 10 years! So RA or not RA that is the question. Pred definitely works for both RA and PMR. But reduction of the drug has created pain in my joints again. But from which ailment? No one knows.

And so the story continues.

All the best for your father.

Xxxxx

[PMRpro Ambassador in reply to PMRandRA]

It isn't the pain that causes the distortion - it is the disease process and it does take longer in some than others. And there are forms of inflammatory arthritis that don't actually create the same damage. Have you got a raised anti-CCP? And are you only on pred - or a DMARD as well?