Rheumatologist appointment

[Romilly2]

So after 2 weeks on Prednisolone with huge improvement I attended the appointment that I booked 6

weeks ago when I was in a desperate state.

I liked him , he listened ( started with the here and now and worked back ) He asked lots of questions and wrote lots of notes . He concluded that yes definitely you have a steroid responsive inflammatory rheumatology condition. Of which there are 300 variations! Given all the other factors he reduced to 2 , PMR or an ankylosing rheumatology condition. He explained that he didn’t want to jump to the PMR conclusion immediately as 1 ) He thought I was maybe too young ( I’m 65 ) and my inflammatory markers haven’t been raised ( He said only 4% don’t have raised markers) . So both those things don’t tally with things I’ve read ! Anyway he suggested to test if it’s the other thing, that I continue with 15 mg for a month , drop to 10 mg ( return of symptoms) email him when pain returns, go for immediate scan to see which tissues are inflamed , then confirm diagnosis. He says Bursitis will show more if it’s PMR . Then go back up to 15mg. His reasoning is that if it’s another steroid responsive ankylosing condition it requires less time on pred so treatment can be more steroid sparing and I could go on another drug later . Makes sense I suppose but not looking forward to reintroducing symptoms 😳Anyone come across this approach ?? Anyway felt it was a useful 45 minutes , and impressed by BMI hospital.

[piglette]

I hope you don’t mind me saying, but the rheumatologist sounds rather irresponsible effectively forcing pain on you or have I misunderstood? Are you seeing him privately? What sort of scan was he thinking of?

[Romilly2 in reply to piglette]

Yes that’s one way of looking at it! Yes it’s a private appointment. I think his rational was to confirm a diagnosis and as I’m already on Pred it’s difficult to know which structures were inflamed. Although reading a few threads here it seems it’s not so cut and dried that it’s purely a bursitis in PMR !

[Romilly2 in reply to Romilly2]

Not sure what sort of scan . A localised ultrasound should pick up bursitis though .

[piglette in reply to Romilly2]

The trouble is PMR is difficult to diagnose. I think if you start taking steroids and you have a magical improvement the chances it is PMR is highly likely.

[PMRpro Ambassador in reply to piglette]

The Keele lot (Sara Muller) have a graphic with 5 different shapes of response to pred - and they seem to correlate quite sensibly with different diagnoses

[Romilly2 in reply to PMRpro]

Is that something I can take a look at ? Is there a link ? Information is power 🙂

[PMRpro Ambassador in reply to Romilly2]

She showed it in the PMRGCAuk webinar a few weeks ago - they were recorded, are they still available?

Hidden (admin) is the person to ask if you didn't request them at the time

[Romilly2 in reply to PMRpro]

I think it was before I joined . I will try to find it , Thankyou!

[PMRpro Ambassador in reply to Romilly2]

Contact Hidden and ask her

[Romilly2 in reply to PMRpro]

👍😁

[DorsetLady PMRGCAuk volunteer in reply to Romilly2]

If you PM Candy as suggested by PMRpro she can tell you if links are still available -and email them to you. Find her under members-moderation team as CandyH -see top of page

[Romilly2 in reply to DorsetLady]

Thankyou, will do 😁

[Romilly2 in reply to piglette]

Yes so it seems , I seemed to fit the complete profile so was a bit suprised when he came up with a possible alternative! I cannot believe the enormous change in my pain level , function and mental state after only two weeks . I know a lot of people are struggling with side effects but to me at the moment this is a miracle 🙂 Thank God for science 🙏

[piglette in reply to Romilly2]

I could hardly move before diagnosis. My GP said it was a virus. It really felt like a miracle had happened when I took the steroids, I was back in the land of the living. I had the diagnosis from a private rheumatologist. The trouble was he then started treating me like a cash cow.

[Romilly2 in reply to piglette]

🙁🙁

[PMRnewbie2017]

Too young at 65 eh? I was 59 when all this started.

[Romilly2 in reply to PMRnewbie2017]

Yes I thought that was odd as everything I’m reading says over 50 not 70 !

[piglette in reply to Romilly2]

I think they say average age around 70.

[PMRpro Ambassador in reply to piglette]

But so many doctors don't understand how averages work

[piglette in reply to PMRpro]

Averages are advanced stuff, they have difficulty with basic arithmetic.

[MamaBeagle in reply to PMRpro]

That's worrying!

[JUDEAPUDE]

I was 56 when I was diagnosed

[Romilly2 in reply to JUDEAPUDE]

Yes not sure where his reference data is from !

[PMRpro Ambassador]

Not bad - BUT what rubbish about 65 being too young!!!!! I was 51 when it started and my bloods were always within normal range - though raised for me. Probably another who doesn't understand statistics and averages and stuff! The average age at diagnosis is 72. Given a lot of people over 72 get it (incidence increases with advancing age) there must be a lot who are UNDER 70! Plus "at diagnosis" isn't the same as "at the start of symptoms" - it took 5 years for me to get a diagnosis and that also shoves the age up.

Bursitis is by no means the only thing in PMR though it can be pronounced - and if he was thinking of a PET-CT, which is by far the best option, you need to be on a very low dose of pred or it risks showing nothing and if he is ordering it privately it will cost a small fortune.

[Romilly2 in reply to PMRpro]

Yes I agree with everything you say ! Must email and ask what sort of scan he’s proposing!!!!!

[Pixix]

It could be good…my doctor is sending me to another rheumy, as he is concerned I may not have PMR…after 2 and a half years on pred, putting in 2 stone in weight, suffering bad side effects. It’s possible I have other things in addition to PMR, though. He thinks I have spondylitis, sero negative rheumatoid arthritis & hypermobility. I’ve not managed to make as much progress on pred as I could, given the time…I’m in constant pain, & his one hour long ‘top to toe’ examination revealed a lot of other issues (plus I already have fibromyalgia, essential tremor, a benign tumour on my spine, osteo arthritis, and my muscles are growing bones on them at my hips…oh & a few other things). I list these just to show you that diagnosis is hard, if there are other things going on! Perhaps you have both, not just one on those (sorry, don’t fret about it, it’s doubtful). Yes, 15mg if pred gave me my life back, but I can’t live on that high amount & hate the side effects! I think it could be good…his approach…what if I don’t have PMR, & have spent this time trying to ‘cure’ (wrong word as there is none) the wrong disease? Just food for thought, I don’t have the answers to your issue…but hope the doctors do!!

[Romilly2 in reply to Pixix]

Sorry to hear that you have so many issues to deal with . Yes in theory I understand what he’s trying to do to give him the benefit of the doubt . Anyway I’ll do the next month and see how it goes and pick a clear week for the test week ( after I find out how much this expertiment might cost me for a scan 😳)

[PMRpro Ambassador in reply to Romilly2]

Somewhere north of £1400 - depending on how much of the body needs scanned ...

[Romilly2 in reply to PMRpro]

😳

[Pixix in reply to Romilly2]

Hope it goes well for you…& thank you, yes, im overwhelmed right now, but will be interested to see if the rheumy thinks I don’t have PmR!! It will be the sixth rheumy I’ve seen!! Good luck!

[PMRpro Ambassador in reply to Pixix]

"15mg if pred gave me my life back, but I can’t live on that high amount"

um - I have for a lot of the time. It was that or not function at all ...

[Pixix in reply to PMRpro]

I’ve been on & off very high doses of steroids for 20 years, for lung infections & other issues, fortunately only for periods of 6-8 weeks at a time. But high doses give me very bad side effects indeed…I vowed never to take another single pred pill in my life 3 years ago..6 months later along came PMR, & I had no choice. I managed 16mg, but 80mg is very hard, even short term, for me. It doesn’t suit everyone!! And I’m not talking side effects like moon face, hairy legs, no sleep, head sweats…I have all of those now, quite minor in comparison! S x

[DorsetLady PMRGCAuk volunteer in reply to Pixix]

“15mg if pred gave me my life back, but I can’t live on that high amount “

Know you have other issues and not being flippant - but sincerely hope you never get GCA .., no option.

[Pixix in reply to DorsetLady]

See my reply to PMRPro, please…I’m lucky I still here, but it is my utter dread when I think of GCA. I fear it greatly. If I get a headache or eye problem, I worry…greatly. But I’m lucky& those are very rare. Fingers crossed.

[DorsetLady PMRGCAuk volunteer in reply to Pixix]

Indeed…take care

[Romilly2 in reply to Pixix]

🙏🤞

[Jayveedee]

I had a similar situation. I was diagnosed with PMR by my GP last September and started on 15mg Prednisolone. I finally got an appointment with a rheumatologist this April and was told he didn’t think I had PMR but couldn’t diagnose until I was off steroids. I wasn’t impressed but started tapering by 2.5 every few days and to my amazement didn’t have any nasty side effects. After a private MRI scan I was found to have bursitis. Have had steroid injection and feeling much better now. I think I’m one of the lucky ones!

[Romilly2 in reply to Jayveedee]

Interesting! I’m keeping an open mind and enjoying getting the use of my arms back at the moment! Although not having been able to iron for 6 months , I won’t be going back to some of those old habits 😁

[tangocharlie]

They don't seem to be totally up to date with PMR knowledge but actually sounds better than many other rheumatologists out there. See if you can get a PET CT scan on the NHS, but as others have said you need to be on a very low steroid dose, around 5 maybe, or off completely for the inflammation to show. I had bursistis in both shoulders AND PMR, the bursitis often precedes the PMR

[Bears23]

I just saw your post. If your rheumatologist thinks you have Ankylosing spondylitis usually they begin with a blood test call HLA-B27 to confirm gene, and at the same time schedule for a X-ray and mri of the SI Joint. If you haven’t had these done, I would recommend. AS can continue to progress if left untreated. I was diagnosed a few years ago. Best of luck.

[Romilly2 in reply to Bears23]

Hi , Thankyou for the info ! When I got back to the rheumatologist to ask what type of scan etc , firstly I got no response, then he just said go to your GP 🙄 I’d already reduced from 15mg to 10 to put myself in the zone to see what inflammatory process would kick in and where , so there was no way I was gonna get a scan from my GP ( who to this day I’ve still never seen ) . Anyway miraculously my symptoms didn’t return at 10mg so I started tapering after a month . Taking it slowly but symptoms started returning at 8 so back up to 9 for the moment, baby steps. It seems to me from everything I’ve read it’s PMR , so I’ll carry on with that self diagnosis for the moment as long as the GP who will not be seen keeps doing repeat prescription s 😊