Appointment with Rheumatologist

[PatB1948]

Hi Everyone,

I had my appointment with the rheumatologist at Ninewells Hospital this morning. After discussing my symptoms, he did an ultrasound scan of part of my aorta where it goes into each arm. The result of the scan was fine so he was still not sure if I have GCA or not but I definitely have PMR. I have been feeling much better on the higher dose of Pred so he said to stay on it and start the reducing to 30mg for 2 weeks after having been on 40mg for 4 weeks and then follow the instruction sheet thereafter. It looks like I should be down to 10mg within 12 weeks. He said to see how I get on and if the headaches come back, perhaps they would need to look at other causes of the headaches. I'll keep in touch with. Pat

[PMRpro Ambassador]

Good luck, I do hope it works well. But just a note of caution: don't set your heart on what the piece of paper says! There are many people with PMR who didn't manage to get to 10mg for some time. PMR is the boss, not the rheumy's desires!

[PatB1948 in reply to PMRpro]

Thanks, PMRpro, will take that on board. I forgot to say that I told rheumie about this site and wrote it down to look at later. Pat

[DorsetLady PMRGCAuk volunteer]

HinPat,

As PMRpro says don't get too obsessed with the instruction sheet.! As we all know life has a habit of getting in the way, and IT doesn't read the instructions.

By all means try, but if you get return of symptoms then don't reduce any more until you've got them sorted.

[PatB1948]

Thanks, DL, reducing programme seems too quick going by all the posts about It, I have seen on the forum. I'll see how it goes and I've not to see rheumie again unless I get headaches so it will be GP I shall be dealing with for the reductions and I will disagree with him if appropriate. Pat

[Pam47]

Hi Pat

I am seeing private rheumatologist next week. I'd like an ultrasound to make sure I really do have PMR (I'm in my early 50s) but am not sure whether to go private for this too. I hope you don't mind me asking- how long did it take to get a NHS appointment? I come from the same part of the country as you!

Pam

[PMRpro Ambassador in reply to Pam47]

Ultrasound won't diagnose PMR - what makes you think it will? There is no definitive test - it is a clinical diagnosis. Don't let anyone tell you there is.

[piglette in reply to Pam47]

Hi,Pam, have you been diagnosed with PMR by anyone or is that why you are seeing a rheumie? Have you had blood tests? Also have you been given steroids? If steroids work like magic on the PMR pain it is quite likely you have PMR. I am not sure why you want an ultra sound, what did you think it would show?

[Pam47 in reply to piglette]

Hi there,

My GP diagnosed it in January, saying my inflammatory markers were 'off the scale.' I have no reason to doubt that it is PMR other than at aged 53 this is younger than the average age of onset (and I need a 2nd opinion to stop my hypochondria assuming it is something even worse!)

Pam

[PMRpro Ambassador in reply to Pam47]

Since there are a lot of people in their 70s and 80s with PMR - there have to be a similar number of people whoa re younger than average to balance it out!

53 isn't that young - I was 51 when it started and there are a lot on their early 50s and late 40s. And the ones who are younger than that are often no diagnosed - so don't get included in the figures.

[piglette in reply to Pam47]

Hi Pam, I assume you are on pred in that case. Did it work? Do you know what your CRP and ESR inflammation markers were? I always ask for a printout. If you have PMR symptoms, the steroids worked and you have high inflammation markers it is very likely you have PMR.

[Pam47 in reply to piglette]

Hi

The pred worked until I got to 10mg, but have move back to 11mg since in so much discomfort. Thanks for this advice re finding out the markers.

[PatB1948 in reply to Pam47]

Hi Pam,

I got an appointment with rheumatologist within 10 days of seeing an ophthalmologist as an emergency because of some symptoms which were suspected GCA. I had already had a diagnosis of PMR back in April when I was put on Prednisolone 15mg. I think the rheumie yesterday did the ultrasound to see if my aorta was being affected by possible GCA. He explained that the blood flow might be compromised by not reaching the sides of the veins completely. As PMRpro says, this will not diagnose PMR. I am not seeing the rheumie again as he said just to continue letting GP deal with things unless headaches come back as I reduce the Pred, in which case, get referred back to him. I hope this helps you. I am in Dundee, is that where you are?

Pat

[Pam47]

Hi Pat,

Many thanks for this. I'm in Perth, but my rheumatologist is in Dundee.

I thought an ultrasound could confirm PMR? I found a paper published in 2015 whose authors suggest it could help to diagnose it.

Hope all goes well for you. I was diagnosed in January.

Pam

[PMRpro Ambassador in reply to Pam47]

Not sure what paper it is you mean. Ultrasound can be used where available to diagnose GCA, but GCA is not PMR.