Should I ask for referral to rheumatologist?

[LMali]

Hi, I was diagnosed by GP in July last year, very quickly, diagnosis confirmed by response to Prednisolone. He was very good and said about tapering down the steroids whilst the PMR "burns itself out", usually over a period of 2 years. So far, so good. Having done some reading, including Kate Gilbert's book, I keep wondering if I should see a rheumatologist. I was 54 when I was diagnosed last summer and she suggests that anyone below 55 should be referred as it might be something else. However, people do not seem to have many good things to say about rheumatologists and as I seem to be progressing ok so far, (I am down to 7/6 mg alternate days), should I bother? What if I trust it is PMR and then 2 years down the track find out it is something completely different? But then what else could it be?

[DorsetLady PMRGCAuk volunteer]

The normal recommendation to see a Rheumy is if your PMR atypical...and when Kate wrote her book, under 55 probably fell into that category....but we see more people under that on her now. Plus it is recognised that it can be found in patients in their 40s.

Younger patients will along, but I think the system may be playing up - I’ve had no notifications this morning.

Although it is a good idea to see a Rheumy at least once just to make sure all on track, don’t know how easy that is at moment.

But please don’t assume 2 years is the limit for PMR....it is for some, but not for everyone.

[LMali in reply to DorsetLady]

Thank you! This forum is so helpful, I know that lots of people take a lot longer than 2 years. In fact I have a friend here in Ipswich who has PMR and is still trying to get off the last 1 mg 3 years on.

[DodiR]

I have been lucky to have a GP who had spent a year working with Rheuma patients and did a study re PMR as a student.

My Cardiologist and Pulmonary Drs all asked if I had seen a Rheumatologist ... they were, still are astounded I won't go.

Why should I when I feel I am receiving the correct treatment, loads of reasurrance etc.

For me personally it is easier to be on this journey with my GP than involve any other Dr.

[LMali in reply to DodiR]

That's true. I feel comfortable with GP, it was just Kate's comment that made me worry.

[PMRpro Ambassador]

You seem to be responding in a fairly straightforward way - you have already reduced to a dose that is similar to what your body makes in the form of cortisol every day to be able to function. If it were most of the alternative options you would probably have had more difficulty at the start and now when reducing below 10mg.

Rheumies, like GPs, come in all shapes, sizes and abilities. PMR does get treated a bit as a poor relation - if you get a good rheumy you may have a really good experience, if you get one that is fixated on the idea that pred deals with all PMR problems and a fixed and inflexible taper will always work and it is only for 2 years it might not be quite so good. A good GP who will discuss your management is infinitely preferable to a rheumy who won't. At present you may not get a f2f appointment for donkey's ages - and a phone appt with someone you have never met and knows nothing about you may be worse than useless. There are specialists who insist they should see all patients with a potential diagnosis of PMR, it isn't going to happen until they make it possible in a timely manner.

But as DL says - don't get hung up on the 2 years and then be disappointed if you can't get off pred inside the time: only a third of patients manage that.

[LMali in reply to PMRpro]

That makes sense . . . I do seem to be responding "according to plan" but this forum has made me beware of false confidence! I keep my fingers crossed all the time! I am wary of feeling too good and overdoing things as I do still work quite hard. I try listening to my body but it doesn't really talk to me very clearly! I think I won't worry about referral at the moment but maybe discuss it with GP at my next appointment. Thank you so much for advice.

[piglette]

You are very lucky to have a GP with common sense. In fact around 75% of people with just PMR never see a rheumatologist. If you had GCA then you would need to see a rheumatologist. You seem to be making very good progress. If the pred is working I would just slowly reduce as you are at the moment. Well done.

[LMali in reply to piglette]

Thank you! I am full of trepidation! So grateful that the steroids are working as the pain when I first had PMR was extraordinary . . . two hands to pick up a cup of tea, waking during the night, couldn't lever myself out of bed in the morning, horrible. And yes, my GP is nice and mentioned PMR really early on, although I did just write down the letters and then look it up myself 😂

[piglette in reply to LMali]

Snap, I could not move in bed even it was so painful. Steroids were a godsend. My GP said it was a virus for months. In the end I went to a rheumatologist privately who diagnosed it in about five seconds.