Apparently I’ve not got PMR ( almost certainly an... - PMRGCAuk

PMRGCAuk

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Apparently I’ve not got PMR ( almost certainly anyhow)

Bamber99
Bamber99

Second visit to the consultant today and possibly good news for me.

He’s pretty certain I don’t have PMR. I responded well to the steroids almost instantly.

Starting at 30mg mid August, GP increased it to 40 due to jaw claudication not going away. I had no other GCA symptoms. I’ve now reduced to 12mg in just 3 months, with no major issues.

I’m continuing to reduce now at my own pace. Next consultant visit in January

In the mean time I will continue to make notes of every single odd symptom that occurs, read all the posts on here each morning and keep up all the small changes I’ve tried to make to help the PMR to go away......just in case

BTW ....no clue of what it is that I might have🤔

13 Replies

I hope this turns out to be a good thing!

Thank you Jane, me too!

Well that’s good news, I hope it’s all ok. I thought quick relief from steroids was a diagnostic clue; it was the only thing they could go on with my GCA. On what basis do you not have PMR and what process do they think occurred on its place?

Bamber99
Bamber99 in reply to SnazzyD

The reason for believing it’s NOT PMR is the ease of the quick reduction. And yes the reason initially for believing is WAS PMR was the quick relief! The magic of steroids🤯

Hidden
Hidden

Sooooo, sorry I missed something here? You do not have PMR, but you do have GCA? Or you have neither?????? OMG! That would be amazing!!!!!

Bamber99
Bamber99 in reply to Hidden

Neither. However I definitely had something and the more I thought about it ( as of course that’s almost all I thought about) the longer I think I’d actually had it. I couldn’t stand and when I eventually did, I couldn’t move, then I could only walk 100 yards or so and then the fatigue 🤯So it’s still a bit of a guess. He ( Dr Hughes) said that if I do have it, he’s not seen it presented in this way before. His reason for believing that I don’t have it is that I’ve reduced very quickly without much difficulty. My knees hurt a bit now but that’s the knee damage that I’m supposed to be losing weight to have ops.not PMR. Only time will tell...

PMRpro
PMRproAmbassador in reply to Bamber99

I wonder if he's aware of the theory there are cases of inflammation that are very GCA-ish that just abort or become more PMR-ish? I had a short period of jaw claudication and scalp soreness, they lasted about a couple of months and I wasn't aware at the time what they might mean together with the very typical PMR symptoms I had which remained.

Eventually I was put on pred and responded very well to 15mg in under 6 hours. The original 6-week taper allowed me to get to 5mg with no problem but when I stopped, all the PMR symptoms were back in under 6 hours. I discussed it with the eye specialist in Gateshead/Newcastle who worked with the PMRGCA NE charity and she was very intrigued. Now Dr Dejaco agrees with me and Prof Mackie that I very probably had/have what his paper describes as LVV but there is now no real way of confirming it.

academic.oup.com/rheumatolo...

It will be interesting to see how the rest of your taper goes.

jinasc
jinasc in reply to PMRpro

Yup and a couple of other people have had the same sort of experience - a Vasculitis Consultant up here is also interested. When I talked to the Vas support group up here, I found out that some of them experienced muscle stuff just like PMR at odd intervals. But then oxygen supply is involved once again. Auto immune illnesses are very mysterious and damn complicated.

PMRpro
PMRproAmbassador in reply to jinasc

I'll talk!!!!!

Bamber99
Bamber99 in reply to jinasc

I’m definitely not celebrating yet. ‘ it’s not all over until the fat ,day sings’🎤🎼🎷

Bamber99
Bamber99 in reply to PMRpro

It’s all very interesting and confusing! As far as I’m concerned the jury is out on this one and it’s just wait and see.

Bamber99
Bamber99 in reply to PMRpro

I’ve read your link: sort of. There’s a lot of words that I need to look up! But thank you it’s very useful.

PMRpro
PMRproAmbassador in reply to Bamber99

All you really need is Fig 1 and look at the colours! LVV is the oval that encompasses the trunk. If arteries in that area are affected then the effects can radiate into the jaw/scalp and into the limbs. Doesn't have to include the arteries actually in the head.

Does that help? Shame we can't sit down together...

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