Still suffering but jury still out it seems πŸ™ - PMRGCAuk

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Still suffering but jury still out it seems πŸ™

SRIXON profile image
SRIXON
β€’17 Replies

Still sufferring but what with after visit to hospital for a scan on my shoulders and report back saying;

SOME MINOR TENDINPATHY & ARTHRITUS PLANNING TO BRING ME BACK FOR INJECTIONS. SUSPECT SOME OF MY SYPMPTOMS WERE BIOMECHANICAL RARTHER THAN RELATED TO PMR.

On receiving the above letter I wrote to my doctor saying I hoped the proposed injection works miracles as I am still not in a good place especially in a morning.

1. I struggle to get up.

2. I struggle to get dressed, my wife puts my socks on.

3. I struggle to make the bed

4. Taking a mug from the cuboard makes me wince

5. Lifting a kettle of water makes me wince.

General pain in shoulders, neck, upper arms and lately my wrists.

Few weeks ago I was down to 3 mg but because of the above I phoned my doctor as I was still waiting to see a reumy we agreed to up my pred to 5mg, it helped a little but last week upped to 6mg but still struggling as per above.

In Feb 2021 it will have been 4 years since originally bring diagnosed with PMR, I feel Im now in worse place that when originally diagnosed although as per start of my note after scans and bloods they are going away from PMR.

My pain and discomfort leads me to believe it is and the real course of action is to put me on high dose again i.e. 20mg. Your thoughts much a ppreciated.

PS my younger brother (63) got diagnosed with PMR last week at the same hospital.

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SRIXON profile image
SRIXON
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17 Replies
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DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

20Mg is a bit OTT - might be sensible to try 10mg initially for 5-10 days a see what effect that has... more in keeping with the usual recommendation.

4 years may seem a long time, but its certainly not abnormal, despite what doctors may tell you at the outset.

With your issues, I would be inclined (if the 10mg helps significantly) to only drop back down to 7.5mg or 8mg - stay there for at a couple of week to gauge the outcome. If good, then reduce slowly by only 0.5mg per month - but only if no return of symptoms.

SRIXON profile image
SRIXONβ€’ in reply toDorsetLady

Thankyou for taking the time to review and reply. My 20mg statement, its what i started on in feb 2017, how i feel now is how i felt then. Carl x

PMRpro profile image
PMRproAmbassadorβ€’ in reply toSRIXON

Mmmm - but you may not NEED 20mg, you have been well below in the meantime . They often start at 15mg and get good results - and if what you need is 7mg, 10mg should show a result.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteerβ€’ in reply toSRIXON

Agree with PMRpro - what I would have said...if I wasn’t sorting out kitchen cupboards!

Smokygirl profile image
Smokygirlβ€’ in reply toDorsetLady

Me too DL! I have found tins that are 6 years old and well out of date..... such a waste!

PMRpro profile image
PMRproAmbassadorβ€’ in reply toSmokygirl

Tinned food doesn't actually need a use-by date - it keeps fine for YEARS unless the lining of the tin is damaged in which case it can go off. Might not LOOK pristine.

goodhousekeeping.com/food-r...

Lots of foods last a long time - my husband tried to get me to chuck rice - no need, as long as it is kept dry it lasts forever ...

PMRpro profile image
PMRproAmbassador

You may not need 20mg - but if it is PMR you need more than you are on. I'd suggest at least 10mg - a good 5mg above where the flare started. Was that at 3mg or sooner? How long were you staying at doses on the way down?

I'd dispute their suggestion that PMR doesn't lead to biomechanical problems

"Biomechanics is the science of movement of a living body, including how muscles, bones, tendons, and ligaments work together to produce movement. "

If muscles, tendons and ligaments are inflamed it is bound to have a biomechanical effect. And that is what happens in PMR.

Who (as in which sort of doctor) did and reported the scan?

SRIXON profile image
SRIXONβ€’ in reply toPMRpro

He was a consultant Rheumatolgist at our local hospital

PMRpro profile image
PMRproAmbassadorβ€’ in reply toSRIXON

I won't say it ...

SRIXON profile image
SRIXONβ€’ in reply toPMRpro

Please do lol x

PMRpro profile image
PMRproAmbassadorβ€’ in reply toSRIXON

I'd be banned!

SRIXON profile image
SRIXONβ€’ in reply toPMRpro

Lol. I get the drift lol. Carl xx

PMRpro profile image
PMRproAmbassadorβ€’ in reply toSRIXON

What hospital is it?

SRIXON profile image
SRIXONβ€’ in reply toPMRpro

Cannock Staffordshire

DorsetLady profile image
DorsetLadyPMRGCAuk volunteerβ€’ in reply toPMRpro

But probably well supported on the quiet!

SRIXON profile image
SRIXONβ€’ in reply toDorsetLady

!!

regan2 profile image
regan2

Hi, 4 years is not that long really . I am now into my 6th year and tapering pred gradually from 4.5mg to 4mg . I also take meth. as I was diagnosed with LVV. Whilst not being able to see my consultant I am basically taking things into my own hands. I have neck pain & shoulder pain but I have completely stopped eating anything that contains sugar apart from fruit and I have drastically cut carbs. I eat small meals & fast through some. As the old saying goes - you are what you eat - cut the medication and eat a good sugar free diet. All the best

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