Referral to a rhuematologist

Hi susan. yes I am the same. My doctor has never even considered a referral to a rhuematologist, he simply lets me control my own treatment as I assume he knows very little about PMR. Reading some of the discussions on this forum does not tend to inspire a sufferer to consider going to a rhuemy althought some do suggest that there are good ones around, they seem to want you off medication asap even though you are still suffering.

When I first went to GP with pains I was given NSAID's.Five years later when on max dose age 45 decided to refer me to rheumatologist who diagnosed PMR after response to large steroid injection.Once treatment sorted back to GP care with referral back when necessaryAt present am back under hospital as had to come off steroids.Started methotrexate tablets but due to bad side effects have just been started on injectionsRheumatologist wants to see me in six months then yearly.Whether at some point back under GP who can say but I know a few who have never been to rheumatologistGood luck on your journey

Hi Susan, PMR can often be managed at primary level. Some people see a rheumatologist earlier on, but as time goes by unless there is a good reason to see them you are fine as you are. I did see a rheumy as I kept being told I had a virus, so I saw one privately who diagnosed PMR.  If you have a doctor who knows what they are doing that is fine,

The first doctor I saw in the practice diagnosed arthritis and actualy told me when I queried him "I KNOW WHAT I'M TALKING ABOUT".

A couple of months later I went back and this time I saw another doctor who listened to my symptoms and said PMR, and he was spot on, Correct diagnosis in about a minute.

I thought..."he knows what's what so I'll stick with this one.

Rhuematologist has never been mentioned but I have complete faith the doctor and am managing my PMR to his instructions.

The one time I thought I knew better (when I tried reducing below 5mg pred) I was proved horribly wrong and him right.

susan i have never seen a rhumy  either  ,i recon if the gp insnt sure what the  pain is he then passes it on to a rhumy.  where as my gp once he was convinced it was pmr  he got me  sorted with pred.  and helped me to drop the dose safely,   where as now   i am controling my own drops    and he is happy with that,   so hopefull i am on the right  road...  i have said that before   lol

Susan,

Early on I was referred to a rhematologist who listened to my symptoms and ran a few blood tests and told me he saw nothing out of the ordinary.  I was referred to another specialist who prescibred a weeks course of prednisone which TOTALLY remedied my pain!  Eureka I said!!  But he would give me another presciption for prednisone.  Go figure.

So I did my own research which took me to this forum, and when back to my GP armed with all this information and now my GP is allowing me to do what I want to do with the prednisone.  I'm at 8 mg after a year and a half and will start going down again in a few weeks.

My experience is that "we're on our own."

In Aus. PMR diagnosis made by GP in less than 10 minutes. Once the diagnosis is made the treatment is obvious so no need for other opinion or referrals. Irregular return visits to GP(s, they go on holiday) for all sorts of little things, like mild shingles and headaches and .....

If it is a straighforward case - i.e. it ticks all the boxes for signs and symptoms and responds to 15mg pred then there is no real reason to be referred unless problems crop up later.with reducing. My blood tests were never up so my then GP couldn't get his head around the idea it was anything, never mind PMR! The rheumies I saw didn't think it was PMR either - even though I responded magically to 15mg pred in 6 hours. A different GP was perfectly happy.

So really it depends on the GP - if they recognie the possibility it is easy enough to manage if they are sensible. If you stick with a GP you are very unlikely to ever be faced with the thought of trying methotrexate or another so-called steroid-sparing drug - they can only be prescribed by a specialist. 

If you have a good rheumy then it can be brilliant - but if you get one with fixed ideas about PMR and how it works you can end up with problems. Ppossible GCA really should always be referred to a rheumy - GPs see it very rarely - but they aren't always perfect with that either. It's a bit luck of the draw unfortunately.

When my GP diagnosed me with PMR about 2 and a half years ago

he wanted me to go to a Rheumy for a second opinion.  I did and

he was very young.....agreed that with a 92 sed rate it was PMR and

gave me a prescription for l0mg pred with directions to take one a

day.  Now don't we all know now that l0mg is not enough to start.

.  I went back to GP and he promptly gave me a new script for

20mg which is more in line with a starting point....Now....which one

would you want?  Just cause they are supposed to be a specialist

doesn't mean they actually are one.  I've been a patient with my

GP for almost l7 years and while he's not perfect I'd prefer him

anyday.

I was on 5mg for about 6 months and was convinced I was over PMR, I had no aches or pains that couldn't be put down to arthritis/age/lifestyle. My GP wasn't as sure as me but allowed me to reduce.

At 4mg I ached and at 3 mg I was in agony, I couldn't get out of bed without falling out and climbing the door. I admitted defeat and my GP put me straight up to 10mg ready to start a reduction to 5 some time in the future.

Bless him  he didn't say "I told you so"

I think 5mg is probably the least most of us who are still suffering can get down to.

If you are happy with your teatment, stick with it...Rheumy`s aren`t all they are cracked up to be!.....

This forum has been the most useful of all to me, especially Eileen...and to many others....Good Luck