New here, glad I found you!

[PmrQ]

Hi everyone, I am new to pmr and the board. I am 51 and live in the US. I was diagnosed with Pmr 3weeks ago after about 9 months of progressively worse pain beginning in my shoulders and neck and eventually including my hips and legs to the point that I could not go up and down stairs or function in daily life. This was misdiagnosed as thoracic outlet syndrome at first and suggested pinched nerves or impingement. It took longer to get diagnosed due to the quarantine but eventually a chiropractor told me I had significant systemic inflammation and that was the problem. My CRP was 3.9 and ESR was 56. I started on 15 mg of Prednisone which worked well but not completely, my GP upped the dose to 20 mg and it has been amazing to have my life back! She would like me to start tapering 1 mg per week unless symptoms return then go back to previous dose. She did instruct me that this may be a long road. I am wondering if anyone has had high liver lab work as well? My alkaline phosphate and GGT were also high and GP has suggested a liver ultrasound. I have been watching my diet and cut sugar and alcohol and very low carb since diagnosis. Thanks for sharing and any advice, I truly appreciate it!

[DorsetLady PMRGCAuk volunteer]

Hi and welcome

The only issue with tapering in a weekly basis is that you are never 100% sure the dose is enough to control symptoms before you reduce it.

Sometimes it can take a couple of weeks before the symptoms of a flare (return of original symptoms) can appear - and if you’ve reduced twice you‘re never sure if it was the first drop or the second drop that caused the issue.

For example say you get down to 18mg, are okay, so you drop to 17mg, and although that’s not quite enough your pains haven't returned within the week so you drop to 16mg......a few days later you get pains - so is it the 17mg that’s not enough or the 16mg?

You don’t know - so following advice you go to 17mg, but that doesn’t work, so you end up going up again to 18mg.

Much better to reduce fortnightly - although most of us on here would say longer than that - 3-4weeks.

Have a look at this as well - healthunlocked.com/pmrgcauk...

[PmrQ in reply to DorsetLady]

Thank you! This is good information, I’m a little worried about the taper and possible return of pain!

[DorsetLady PMRGCAuk volunteer in reply to PmrQ]

Well you can but try...but if you get a return of pain then you need to let GP know that it’s not working and suggest you stay at each dose longer than a week.

You’re not try to reduce to zero come what may, you’re trying to find the LOWEST dose that gives you the same relief as 20mg did - and it’s a bit of a juggling act - so the slower you can go the better really.

Unfortunately some doctors think that the initial dose clears it up and that’s that - it not- the inflammation which causes the pain is still being released every day - so you need enough Pred to dampen that down.

[PMRpro Ambassador]

Hi and welcome.

Raised liver enzymes are common in PMR - she only had to ask google!

"Serum alkaline phosphatase appears to be the most consistently elevated enzyme in 18 to 62% of patients with polymyalgia rheumatic. Elevated alanine and aspartate transaminases occur in 18% of patients with polymyalgia rheumatica. Serum bilirubin is typically normal."

How come the GP hadn't noted the raised inflammatory markers? Talk about hooves and zebras ...

I agree with DL - 1mg per week is fraught with problems if you are unlucky. 2.5mg every 3-4 weeks is far preferable to 1mg weekly. Some people can be very sensitive to dose changes and if you are one of them you could end up feeling rubbish all the time and not knowing if it is the PMR or the change in dose.

[PmrQ in reply to PMRpro]

Thank you for the info! I will definitely take my time with the taper! To be fair, I only saw my GP last fall when initial shoulder neck pain started then worked through testing/exercises with physical therapy. I resigned from my job in January thinking if I got back to yoga and stretching and decreased stress it would help, then Covid started and I suffered at home until May, always thinking it would get getter with rest. When I saw a new GP in May she diagnosed it within a few days of lab work and started the steroids. I should have gone earlier but wasn’t aware of PMR and kept hoping things would get better.

[DorsetLady PMRGCAuk volunteer in reply to PmrQ]

We’ve all been there! Our own worst enemies sometimes.