So it's not PMR ??

[Sydney0503]

Hi all, I was diagnosed at 52 last October by my UK GP and immediately put on pred (15mg) and immediately felt better ( although I was feeling a bit better they day before the pred...). I was shocked and totally anti taking steroids but did as I was told. Cutting a long story short, I saw a private rheumatology consultant last week who has said it is highly unlikely this is/was PMR and that my mild issues tapering are more likely to be normal aches /menopausal changes which makes way more sense. I hadn't realised how much the diagnosis was hanging over me, causing me to think every twinge is a flare up but I feel ( my body feels) so much better since I saw him . He also asked me what pain relief the GP tried me on before pred?..... answer ... nothing ... So, I will have to see what happens but I am delighted he thinks PMR is unlikely yet miffed I've been put on steroids that will still take me many months to get off when maybe I didn't need to be . Anyone else had this experience ?

[jinasc]

On what grounds did the consultant give you for thinking it was not PMR. Did you have any tests etc?

[Sydney0503 in reply to jinasc]

my age, my condition at onset, my strength and flexibility, the fact it wasn't a morning thing easing in the day . Inflammatory markers were high at the beginning but he thinks a viral infection then.

[SheffieldJane in reply to Sydney0503]

I hope he’s right for your sake. My first Rheumatologist told me I had Fibromyalgia. I definitely had PMR then GCA, confirmed by. Rheumatologist with a particular interest in the field.

[DorsetLady PMRGCAuk volunteer in reply to Sydney0503]

So how does he account for the flare you had 3 months ago if it's not PMR?

[Sydney0503]

He thinks ( said ... bad choice of words from me ) coming off steroids will reveal natural aches and pains and are not pmr flare ups . He feels steroids cover many things so withdrawal will cause some withdrawal symptoms . I think I’ve found it difficult to work out what is a flare up and what’s steroid withdrawal which is why I kept asking .

[Greensleeves in reply to Sydney0503]

Personally I would get a barrage of blood tests done by your GP to rule out other conditions, and then see another rheumatologist for a second opinion.

Many of us have found ourselves in similar situations, and the diagnosis is PMR , which in the grand scheme of things is better than some other autoimmune diseases .

[Sydney0503 in reply to Greensleeves]

I had lots of tests including chest x ray in the beginning to rule out other nasties . Last set of bloods were normal

[Greensleeves in reply to Sydney0503]

I would taper off slowly and see how you get on.

As far as your age many of us were 50 , probably menopausal and it’s patronising to suggest it’s normal aches and pains .

I felt at my prime when it started and was initially told it was wear and tear , all blood markers were okay .

It was a physiotherapist who advised it was PMR , I couldn’t understand why I’d come back from a fabulous holiday and suddenly couldn’t put my arms behind my back .

It got so bad I was incapacitated with pain in my shoulders and arm muscles. I resisted steroids for months. But gave in , sometimes I wish I’d suffered when I’m fed up with steroids, but that’s easy to say now. I do know the pain was unbearable and I couldn’t move in bed . It didn’t improve on getting up either. Only steroids have helped . I would refuse steroid sparing medication too . I hope you are able to taper off and feel much better soon.

[jinasc]

"He thinks" - not good enough for me...............he should know.

Is it because of your age that he thinks not PMR. If so he is incorrect.

What is a worry, if it is PMR and left untreated it can and does sometimes morph into GCA and that is the last thing you want. Methinks you should see another Rheumatologist who specialises in PMR & GCA. Some of us do know some good ones, so where do you live.

BTW did you tell your GP about your visit to the Private Consultant and the result of that visit?

[Sydney0503 in reply to jinasc]

The GP referred me as he also doubted the initial GP diagnosis and is in the loop. The consultant is a PMR specialist and of course I’m still on steroids as I can’t just stop . I feel better since having to is discussion so psychology is/ was clearly playing a part .

[PMRpro Ambassador in reply to Sydney0503]

But if all you are doing is getting off pred it can be much faster. The steroid withdrawal should settle in a week or two each time.There are people who claim to be PMR specialists - but with some I really have my doubts!!! Especially when they play the age card ...

[jinasc in reply to Sydney0503]

As your Consultant is a specialist, please could we have the name so we can add it to the list. Just in case someone needs a consultant. Thank you.

[PMRpro Ambassador]

And on what grounds does he say it is unlikely to be PMR? I was fobbed off by the GP for 5 years with age/menopause. Neither of them respond to pred the way I did to my first 15mg.

Just seen your response to jinasc - I was 51 when it started, fit and at the gym most days, can still (PMR or not) touch my toes and my blood markers were in normal range - but raised for me. None of the rheumies I have seen here question PMR - I just have a very long-lasting version which makes reducing hard because it keeps flaring. That is something a lot of younger patients experience - it is probably just one of several versions of PMR.

[Susiquew]

Yes, I had the same experience but with wrongly diagnosed GCA/PMR...but felt very much worse on prednisolone, which took 8 months to taper off.