So confusing

[Angiejnz]

I am an expat living in NZ with no support hence coming 'home' for help. I have been diagnosed with pmr on the basis of imaging and cry results. I was put on 60 mg of predict by gp and loved the pain diminishing, about to start tapering. I still get breakthrough pain at night if I've overdone things. I just feel like a yo-yo and a fraud as apart from the ongoing fatigue I feel pretty good........until I feel horribly grotty. The ups and downs are so confusing, when I'm fine I feel a fraud and there is nothing wrong with me. My husband has grave doubts I have pmr, mostly because I do too. Is the ride as 'interesting' for others??!

[Rugger]

Hi Angie,

Welcome to the forum. Lots of us are in the UK, but many worldwide too.

There are others in N Z. If they don't spot your post, you could start a new one with New Zealand in the title.

60mg is a high starting dose for PMR, but more usual for GCA. I think 25mg is said to be high enough for PMR, but others will add more. Have a look for DorsetLady's advice for newbies - she is a mine of information and PMRpro too.

[Angiejnz in reply to Rugger]

Thanks

[PMRpro Ambassador]

If your diagnosis is PMR I can only wonder you have been started on 60mg? That is a highish dose even for GCA where it is more important to get the inflammation under control quickly. The latest recommendations say "the lowest effective dose in the range 12.5-25mg/day".

rheumatology.org/Portals/0/...

which saves a lot of the side effects you are bound to experience at 60mg - you must feel as if you are in orbit! I do hope the GP is going to reduce that dose considerably and quickly if it really is "just" PMR.

You are feeling good because you are on such a high dose - it gives you wings and makes you feel invincible. Why do you both feel you DON'T have PMR?

The pred only manages the inflammation - it does not "cure" anything and the actual cause of the symptoms, an underlying autoimmune disorder that causes your immune system to be unable to recognise your body as self so that it attacks your body tissues as foreign by mistake, cntinues in the background. This leaves your muscles intolerant of acute exercise and so the delayed onset muscle soreness you will be familiar with from doing too much appears in response to a far lower amount of activity and then lasts much longer. You have to modify your lifestyle to take this into account and pace and rest appropriately:

healthunlocked.com/pmrgcauk......

[Angiejnz in reply to PMRpro]

I was put on 50mg which didn't deal with the pain and 2 weeks at 60 has. I live in rural New Zealand with a country GP who is doing his best, with no short term access to a rheumatologist. I feel a fraud in that I'm atypical, I don't get the crawling pain in the morning, more middle of the night and even evenings. I am 53 and have never been a typical patient in whatever comes my way so being atypical is par for the course and no surprise. The fatigue has been around a while which has had the gp thinking about an autoimmune problem so when the hip girdle pain appeared suddenly, I think he was just happy to have something to try and treat. I've read as much as I can and realise that 60 is horrendously high but it's working so until I get a different diagnosis, that's what we're working with. Not great but better than the pain.

[HeronNS in reply to Angiejnz]

There is another disease which seems very like PMR, but the pain often rears its ugly head at night. I'm sorry I don't know off the top of my head what it is, but it is one of the ones which would turn up in a search for polymyalgia differential diagnosis. It's important to be sure you have PMR as other ailments may be treated more successfully with other medication. PMR is a set of symptoms which respond positively to a moderate to low dose of pred. If you are still getting breakthrough pain at 60 mg, at night, then there is a chance it could be something else.

[Angiejnz in reply to HeronNS]

That's partly why I think I might have something else altogether or something else in addition????

[Hindags in reply to HeronNS]

I think iirc that the ailment PMR mentioned as masquerading as PMR but with a different daily pattern might have been ankylosis spondylosis.

🤔

[PMRpro Ambassador in reply to Angiejnz]

If you are getting night-time pain, starting say about 1-2am then ankylosing spondylitis must be considered. You say "hip girdle" - where so you mean? The sacroiliac joints in the pelvis for example?

But what can be said fairly confidently is that, if you needed 60mg pred to manage the pain, really there has to be a major questionmark about the diagnosis being PMR. One of the characteristics of PMR is that it responds to a moderate dose of pred - up to 25mg or so. There are a lot of things that would respond to such a high dose and using such a high dose for any length of time without specialist input is going to cloud the view when you do get to see someone. beefore they can investigate you are going to have to wean off the pred and if you have been at high doses for more than a few weeks that may pose problems and take some time.

So yes - I think you are quite correct in wondering. I have every sympathy for your GP - but he should have the courage to say it is questionable that it is PMR. And he MUST be able to access rheumy advice - even if it is only by phone.

[Angiejnz in reply to PMRpro]

I think I may be completely atypical as I am having more things checked out to try to understand interactions and triggers with the 3 main pain areas including the failed fusion and major nerve damage caused by the shwanoma tumour all being in the same area. More investigation into referred pain, pain echo and whether I'm getting breakthrough pmr pain or mixed signals not being able to delineate. Pheeeewwew

[PMRpro Ambassador in reply to Angiejnz]

I suppose you could say that if you are "totally atypical" then there is a justification for saying it possibly isn't PMR simply because there are criteria to define what PMR is (for the purposes of study, not diagnosis it should be said) and you don't fit any of them apart from the symptoms. PMR is only a name to describe a set of symptoms - and there are several underlying causes.

Sounds like a seriously complicated situation...

[Angiejnz in reply to PMRpro]

Definitely not spondylitis, frequent follow ups with neuro and surgeon means the back part is something we are sure about

[PMRpro Ambassador in reply to Angiejnz]

No, I realised that when you wrote more about your history. Though apparently it can manifest in the sacroiliac joints with no apparent changes in other parts of the spine in the early stages. Which is something that obviously makes the diagnosis problematic.

[Angiejnz in reply to PMRpro]

I think for now I'm going with pmr for most of the symptoms of sudden onset, lethargy, response to Prednisone, blood counts but accept with a pretty poor immune system I may have overlapping issues. I think I'm my GPS version of the Times cryptic crossword

[SnazzyD]

Hello, by “predict” do you mean Pred and the autocorrect messed about with it? If you do mean Pred, 60mg is a huge amount for PMR and really should have knocked pain on the head. Perhaps you don’t have PMR or your pain is now due to over doing it and your muscles weakened by Pred are complaining. The Pred is not a cure, it is just keeping the inflammation at bay and your muscles will have a lower tolerance to strain. The autoimmune condition is still there and will cause fatigue. Pred also wipes you out but it also gives you go juice at the same time so you are tired but wired and it gives you a false energy. Whether you have PMR or not, on high doses of Pred you need to pace yourself and look after yourself.

[Angiejnz in reply to SnazzyD]

That would account for the ups and downs then, love the analogy of the false energy as that is exactly what it feels like, thanks

[DorsetLady PMRGCAuk volunteer]

Hi,

Have answered your pm.

[Angiejnz]

Hi and thanks where can I find it???

[DorsetLady PMRGCAuk volunteer in reply to Angiejnz]

You will get an email notification.

[magmapearl3]

Hi Angiejnz. I am living in NZ (originally from the North of England) and was diagnosed 3 years ago. I started on 20 mg and have now reduced to 2 mg after many ups & downs. Your starting dose seems very high. There isn't a support group in NZ but there are people on this site from NZ. This site is incredible and will give you awesome information, guidance and support if you do have PMR. Good luck.

[Angiejnz in reply to magmapearl3]

Hi I'm outside New Plymouth, where are you

[magmapearl3 in reply to Angiejnz]

Te Kuiti In the King Country.

[sondya]

Live in Auckland. Not many with GCA. My most support is from forums.

[Angiejnz in reply to sondya]

I'm just atypical and a problem 😶

[rosajur]

Hi Angienz,

I too live in rural NZ & have never had an appointment with a rheumy like others on this forum. Have had PMR for 4.5 years starting at age 53 & now am on 2mg pred per day. Initial dose was 20 but I took it down myself as I was terrified of the side effects & weight gain..which happened anyway. Felt like a fraud all the way. It didn't help matters that the first dr I saw said I was an alcoholic drug user who was severely depressed. He judged me on the way I crawled into the surgery..Long story but yes, fatigue & lack of stamina is ongoing. Wish there was a magic wand..

[ConventCassie in reply to rosajur]

Don’t know your story, but can so relate to the “crawl into surgery” and not making it to the exam table. So glad you have an “additional doctor”? Keep in touch with this group, apparently there are vetinarians who are better informed about Prednisone. Good Luck.

[rosajur in reply to ConventCassie]

Yes, thanks. Basically I have been left to my own devices through the 4.5 years & would've gone mad if it hadn't been for this forum. Staying on low dose as it suits me in many ways. Current dr is ok with this.

[PMRpro Ambassador in reply to rosajur]

How delightful - he'd have been reported like a shot. How judgemental - and liable to kill if he isn't careful...