Flare?

[NellieDoodles]

Hi,I'm posting on behalf of my mum, who was diagnosed with PMR at the end of October this year, after I took her to A & E. She told them she was certain she had PMR, but they were not convinced thinking she had osteoarthritis, until her blood results came back confirming PMR.

It was in her thighs & shoulder. A&E put her on 10mg prednisone.

The next day she was remarkably better, with most of the pain gone.

However, she still had some pain. But from the severe pain she had been experiencing before the prednisone, she was feeling so much better.

But from research i had been doing, I was convinced her prednisone dose wasn't started high enough. It seemed 15mg was the general starting dose.

So I arranged an appointment for her with her GP. He confirmed the dose wasn't high enough and increased her dose from 10mg to 15mg.

She was now pain free on 15mg.

Not long after that she had her appointment come through with Rheumatology at the hospital.

At this appointment, the consultant confirmed her diagnosis of PMR and told us that from her bloodtest that was done when she was in A&E showed very high levels in inflammation - I think it was 18.

The consultant wrote down the plan for the prednisone reducing with the time period & prednisone mg reduction.

Mum went from 4 weeks at 15mg to 12.5mg with no problems then from 12.5mg to 10mg. She had been on 10mg for 2.5 weeks when she suddenly developed the pain in her neck. This was 10 days ago. She had not had it in her neck previously. The pain has not come back in her shoulder or thighs though.

As this happened the Wednesday before Christmas we were not able to get any help or advice from her consultant at the hospital. She went to the GP but ended up seeing a doctor she had not seen before, who seemed to have no experience of PMR so wasn't very helpful. Just said to wait a few days and if still in pain increase steroids! My mum was in extreme pain. Also whereas the pain she had when it all started in her shoulder & thighs would be when she got up in the morning then gradually decrease as the day went on, this in the neck would come on at all different times of day & night. She was now taking 8 paracetamol per day aswell.

My mum increased her prednisone from 10mg to 12.5mg, but 24 hours there was no change & it was now Christmas eve and not wanting to be in such pain over Christmas I convinced her to increase to 15mg on Christmas Eve morning.

It has improved a bit, as in the pain isn't so bad but it's still there.

We are hoping we will get a call back from the Rheumatology consultant on Tuesday when things are back to normal from the Christmas break.

Any advice or similar experiences please?

Thank you.

[DorsetLady PMRGCAuk volunteer]

Hi,

Sorry to hear you mum has PMR - and unfortunately plenty have been in same situation as her.

Too low a starting dose then too fast a taper. As you say 15mg is a much more normal starting dose - and even then 15-12.5-10mg although a recognised taper is often too fast for many.

Usual advice for flare is to add to 5mg for 7-14 days to the dose patient last felt okay - to mop up built up inflammation- and then return to just above previous dose.

So although she has gone back to 15mg it may take a bit longer to take effect - it’s like going back to beginning. But, she might find she needs a bit more than 15mg to get things really under control.

You might like to have a look at this information/introduction post -

healthunlocked.com/pmrgcauk...

- and this on flares-

healthunlocked.com/pmrgcauk...

Hope your mum soon feels better, and please let us know how she gets on - always someone around

[PMRpro Ambassador]

Hi and welcome.

To be honest, I am doubtful that the neck pain is the PMR flaring. It is sudden and isolated - i.e. the other typical PMR symptoms aren't there. It sounds more like a spasmed neck muscle in response to bad movement or lifting something - the sternocleidomastoid muscle is a common culprit for example. It might be worth looking online for some stretches for that muscle. Other options are not going to be easy to find until after the New Year unfortunately.

my.clevelandclinic.org/heal...

Heat on the affected area might also be useful. Paracetamol isn't ideal - it doesn't have enough antiinflammatory effect but the pred should be providing that I suppose.

[SheffieldJane]

well done NellieDoodles you are completely right and your mum is lucky to have you to advise her.

[sidra1968]

My neck pain also comes on at all different times and even different areas (side and also the back of the neck.) I had to go up in steroids a few times to stop it (and it took around 5 days to q week to really be gone). I am finally trying 20 mg (down from 30 mg) this week and will have zero problem upping it again to be almost pain free. 15 mg is probably too low for her, we are all different. Keep us posted!