First rheumatologist appointment today. I’d value... - PMRGCAuk

PMRGCAuk

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First rheumatologist appointment today. I’d value opinions of experience please

Bamber99
Bamber99

Diagnosed PMR by GP 7.8.19

Symptoms - extreme fatigue, appetite loss, apathy, jaw claudication, upper arm muscle pain / fatigue sometimes, severe calf muscle fatigue, lesser so thighs, could only stand for a couple of minutes ditto walking. After sitting, could no walk immediately after standing, had to wait for right leg to mobilise/ support me. NO shoulder or hip pain or headache

Both the blood indicators were very high: you will know what they are

Pred prescribed doses weekly as follows 30:40:35:30: & then 25 for 3 weeks till now.

Day 1 immediate regained energy. By day 2 pain / discomfort gone. Still up to today slight jaw claudication when chewing a lot.

Week 2 one blood indicator back to normal the other I think the C one had reduced by only 50% hence increase in Pred.

Rheumatologist says I have atypical PMR and good response to steroids. Not to worry about raised bloods as they can be misleading.

I realise from here and meeting others at the AGM that I was suffering less than many others and with fewer symptoms

His plan is to reduce to 20mg tomorrow for 3 weeks and reduce 3 weekly by 5mg up to 10mg and review with him mid November.

What do you all think?

18 Replies

Follow this link and read up on both GCA and PMR, they are the BSR Guidelines to the Disagnosis and Treatment of both - they can be downloaded to make it easier to read.

pmr-gca-northeast.org.uk/us...

Sounds to me when I read your post that you have both GCA and PMR.

If you have GCA, then you need to watch out as that starter and reduction plan sounds a bit fast to me.

Yes your Rheumy is correct both ESR and CRP are guidelines, but they also don't work for everyone and they also just mean something is going on and they have to find out what, ie they can be raised for whole host of other illnesses.

Bamber99
Bamber99 in reply to jinasc

Thank you I will be most vigilant. I make notes of any changes as they occur so as not to forget

PMRpro
PMRproAmbassador

All sounded good until you got the "reduce 3 weekly by 5mg up to 10mg" - that is a bit fast IMHO. See what happens when you get to 15mg.

Like jinasc I wondered about "is it just PMR" - I think you are atypical in that you may have at least large vessel vasculitis like I probably do. So once you try below 20mg watch out for that jaw claudication. If it gets worse go back to the higher dose and contact the rheumy. I'm not going by high blood markers - I'm going by the clinical presentation. So should he...

Bamber99
Bamber99 in reply to PMRpro

Thank you I will proceed with caution. He has given me his e mail address so I can contact him quickly

PMRpro
PMRproAmbassador in reply to Bamber99

It's the speed of his replies that matters ;-)

Hi Bamber99. I am puzzled by your Rheumatologist’s dosing plan and I am concerned that he’s racing you off Prednisalone too fast. It would be miraculous if your GCA was in remission in a few short months. I think you are suffering quite a lot actually and I don’t want you to suffer more. I would be seeking another Rheumatologist who understands the condition. Where in the country are you?

Twickenham/London he’s been recommended by a few people. I’ve not been diagnosed with GCA only PMR. I also thought it was quick hence putting the question out there. He said that the GP had prescribed an over generous quantity of Pred.

Even Rheumatologists with a good reputation can be poor when it comes to PMR in particular. Please let us know how you get on?

Yes we see it all the time xx

PMRpro
PMRproAmbassador in reply to Bamber99

By people on the forum?

Why did he say you were atypical?

Due to having no symptoms in my shoulders or hips

HeronNS
HeronNS in reply to Bamber99

🙄 Sigh. Thighs and upper arms not close enough I suppose? Good Luck! 🍀

I agree with Jinasc, PMRpro and SJ - all very insightful, informed and experienced members of this forum & yes that taper sounds much too fast and will end in tears I think. Also I don't think the fact you don't have shoulder and hip pain would necessarily eliminate the possibility of GCA - after all you have jaw claudication which is a classic symptom. Your rheumy needs to see the BSR guidelines for sure. Hope your meeting goes well and the Rheumy is amenable to listening/reading more about PMR/GCA.

Best wishes

Rimmy

I can only advise from my own experiences Bamber, mine came on overnight. It hit me like a serious road accident. I had two seperate GP opinions who then refered me to a rheumatologist. The man was very thorough, but agreed with the previous diagnosis. What was his medication prescrition turns out to be spot on for me. 20mg straight off for a month then reducing by 1mg a month until the course is finished. So far so good at 6mg.

I agree with the other replies but am concerned about the jaw claudication, just keep a diary of your symptoms and how you feel when reducing and show it to your Rheumie and GP. Just be vigilante re your eyesight too, any visual disturbance or unusual one sided 'top heavy' headaches, pain when chewing and jaw ache - these are classic GCA and will need higher doses of pred than for PMR. Whatever you've got don't reduce if symptoms aren't settled, you'll only hit trouble. I'm sorry you've got this diagnosis.

PS: I'm looking at the diagnosis date, is your GP psychic?

Bamber99
Bamber99 in reply to Telian

Ha ha 2018!

Thought I’d lost a year somehow!😀😀 Not gaga after all!

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