Update re Sensible GP, Rheumatologist not so much…

[Spittal9]

Got a call from my Rheumatologist yesterday. Spoke to him on the phone ten days ago, when he said he wasn’t happy I hadn’t been able to lower my Pred dose for PMR significantly over two years. He said he was going to contact my GP and get him to prescribe methotrexate.

Update - he said he’s been thinking about me since we spoke. I’m impressed that I’m on his radar. He said he’s looked through all my notes including when I was diagnosed with PMR I was in hospital two years ago. The first thing he said panicked me a bit as he said he has been thinking along the lines of GCA but doesn’t think I’ve had this. Then he said he’s thinking more of vasculitis. I was recently diagnosed with intermittent claudication in my legs. He’s organising a PET scan to check this out.

I’ve had the pains in my legs since my PMR diagnosis but it’s only now that that’s been identified as not related to the PMR. The methotrexate has been out on hold for now.

I appear there have managed to get this flare under control by increasing my Pred and I’m feeling so much better. Increased to 15mg for a week and then stayed on 14mg for 5 weeks. Slowly, slowly, is the way forward…

[123-go]

What a relief that your rheumy is at last looking into your concerns and is arranging the scan!

[Spittal9 in reply to 123-go]

I was really surprised when he called as he appeared to be quite dismissive when I spoke to him recently. Hopefully now we’ll get a clearer picture of what is going on. He mentioned arteriosclerosis and I said my Mum died of that when she was 63. I’m now 62. So he said, we definitely need to get there the bottom of what’s happening to you and there are various medications if this proves to be the case.

[123-go in reply to Spittal9]

That's very reassuring. It would be a fine thing if doctors allowed five minutes to get to know a little about patients as people. I'm sure that some have us down as 'worriers'!

[Spittal9]

Consultations last such a short time. It’s no wonder things are missed.

[PMRpro Ambassador]

Strange concept - what is GCA but a vasculitis? But I assume he's seen this:

academic.oup.com/rheumatolo...

and thinking maybe LVV

[Spittal9]

Thanks for this! I’d like to think that he has read this but we maybe assume too much.

[SheffieldJane]

The pains in my legs that I had with PMR were different in nature to the peripheral Vasculitis pain from my more recent diagnosis. The latter feels far more like a squeezing , burning pain related to circulation and activity and intermittent.The PMR pain was more generally achey and things like getting out of the bath were very hard stiff and painful. Relieving PMR pain seemed easier with Prednisalone than relieving my various GCA/LVV symptoms.

[Spittal9 in reply to SheffieldJane]

I’ve have had the pains in my legs since my PMR began two years ago and they are as you describe. It’s only now it’s being picked up that it could be something other than PMR that’s causing it.

[SheffieldJane]

Peripheral Neuropathy maybe?

[Spittal9 in reply to SheffieldJane]

I’ve always had issues with my hands and feet being cold. Can’t remember a time they were not. Years ago my GP said it was most likely Reynaulds and if it became a problem there was medication I could take. I’m now on medication for the intermittent claudication in my legs and that’s helped my hands and feet too.

[SheffieldJane]

I had Raynauds for years prior to diagnosis. It appears to have gone - Prednisalone maybe?

[Spittal9]

Glad to hear it’s gone for you. I find it strange to have warm feet lol.